Cancer Survivors Network

christy i was diagnosed with AA3 in Nov 2010. ure statements r very true. would like to talk to u. Imma still alive and kickin also. Got to, my lil girl depends on me.

Keep up the fight.

Hi Christy,
My dad was also diagnosed with AA3 in july 2010. Of course his prognosis was also poor but after surgery ,radiation and temodar he is cancer free. My question to is that his doctor still have him on monthly temodar it seems be causing several side effects. Do you take temodar also?
Thanks,
Sandi

Hi:

My 18 year old daughter was diagnosed with AA3 in February 2011. We are still finishing her 12 month treatment plan. It includes Avastin, Irinetecan and Temodar. She also had brain surgery and radiation. I am curious how long they plan on keeping him on Temodar? Where does he get treatment? We are thinking of going to MD Anderson for a second opinion, well a back up plan in th event of a reoccurrence. Right now, her MRI's are stable. I have read other posts of other people taking Temodar like a maintenance drug. I send you God's blessings!

Edna

Sorry I do not get on here very often anymore...out busy living life! I have my 4 year MRI in May, but all my scans have looked good and I am no longer taking preventative chemo....my husband and I want to have a child and getting the chemo out of your body and for everything to return to normal is a long path.
I have taken my fortune and faith in God to go back to leading as normal of a life as possible-I will always be there for those who need someone to talk to, and to help them have the same confidence I have to not let cancer take over my life....we never know what tomorrow will bring and I choose to live for today.
Right after my diagnosis it was very difficult to deal with everything, this board helped me so much......not to not fall into the trap that cancer often lays down for us--depression, no appetite and being scared as hell....talking with people who you can relate to is key in having faith in whatever treatment decisions you make.
If anyone ever wants to talk, PLEASE feel free to send me an email--csnelling1@neb.rr.com
I will always be here for everyone!!

Christy

I think that is the best way of looking at it. I asked my doctor 8 years ago what my chances were and he said, "Candice, grade three Astrocytoma...not good", and I felt a little voice inside my soul from the Lord tell me "You are going to be ok. You are not a statistic". You keep your head up and trust in Jesus. He can bring you through this just like He did me. There is ALWAYS hope when we have faith! I will pray for you!

kicked him out of my room and I told him that was not enough time. Doc 2 gave me a year. My current doctor says I am doing 99% better than most of his patients. God Is Good. 3 yrs and counting.. astrocytome grade 3.

I have been told -researched a little that this type of cancer: hereditary and less than 3% are woman under 50. Anybody in my boat? Lets chat share info

hi my name is Laura i do not have cancer but my husband does we live in Canada back in 2007 my husband was diagnosed with stage 3 tumour which he was told was rare as it was growing out from the brain stem he had surgery which removed about 90% then 6mnths of radiation and almost 2 yrs of temedol.he stopped the temedol and went back to work his last MRI which was in Dec 2011showed a two cm growth know were waiting for word from the surgeon. My husband was told 5 yrs but he is not a statistic we will beat this one way or another were thinking maybe something more natural this time

Hi Buzy Bee:

My 18 year old daughter was diagnosed in Feb. 2011, she was onlhy 17 then. I feel just like Julia (I Promise) wrote earlier - just sick today from the thought of my daughter's prognosis. She had brain surgery, they got 85-90%, six weeks of radiation with Temodar and now we are doing a year of chemo. The chemo is Irinetecan, Avastin and the last infusion has Temodar.
Today on the morning news, they had a 17 year old girl who had a baby and then died from brain cancer. I was still drinking my coffee when I heard that. I have faith. Somedays, I KNOW that God has a plan for my daughter and it is all good. Other days, I know he has a plan, but I am not certain what that is. She is struggling through the chemo. She has a speech impairment from the tumor (left frontal lobe). I am going to fight like the biggest Mama bear on this planet. I claim new health on her every night. I am a praying warrior and I know that God is good. I had not heard that this was hereiditary, did you?
I don't know how she got this. This Spring, we are going to find a new neuro-oncologist because our current one is not working out for us. We need someone to champion her fight. We are going to look at MD Anderson and UCLA San Francisco unless someone knows a better hospital. I wish you the best and God Bless. Edna

Hi, Edna.

I think I saw that same news story on Facebook...the girl's name was Jenni Lake. Here's the FB link to her page, jenni's journey:http://www.facebook.com/jennis.journey. It was a heartbreaker of a story. What incredible unselfishness. It made me feel sick to my stomach and started me on a crying jag that I really haven't totally gotten over.

The doctors that we have seen have all said that brain cancer is not believed to be hereditary. I don't know if they meant just David's tumor type: oligodendroglioma. I think they meant all primary brain tumors are not hereditary. We don't have any history of anyone in our family ever having any form of any cancer. Not one relative. And we have a huge family. The biggest health concerns in our family have been heart trouble, high blood pressure, strokes, diabetes, those kinds of things.

I am glad that you are going to find a neuro-oncologist that will fight harder for your daughter. I believe in being proactive and not settling for the nearest doctor or for a doctor that isn't doing what you want. We got our third opinion from UCSF (in 2009 when David was first diagnosed) and I really liked them. They were our second choice after OHSU. Back then, I had misgivings about having a doctor and his team treating David from a distance, but after our experience with NIH in Maryland, I discovered that it is possible to have great care from a team that isn't in your back yard. We ended up staying with OHSU partly because we wanted to participate in the BBBD clinical if David had a recurrence. That didn't work out the way we had planned, though.

About the BBBD..... I believe that David had issues with the treatment because his tumor load is so great now. And I blame the amount of tumor that he has on his insurance company. We lost valuable, irreplaceable time arguing with them about covering the BBBD clinical. When we were denied treatment by the insurance company, we went to NIH in Maryland for treatment and it didn't help. So from May to Nov. David's tumors were virtually unchecked because he didn't receive any effective treatment. After all that hassle, arguing, heartbreak, and pleading, he finally got approved for the BBBD but now he can't handle the BBBD. His tumors are taking up too much room in his head, and he can't tolerate any swelling, and the BBBD causes some swelling. I am heartsick, thinking that the delay in getting treatment for David could cost him the last few years of his life. He is fighting back from the terrible time he had with the last BBBD treatment but it hasn't been easy. He is nauseated, he has really bad bloody noses, he has blood in his stool, he has headaches, his bones and joints ache really bad, and he feels lousy in general. He doesn't want company, he doesn't want to go anywhere, he doesn't want to watch the Ducks game tomorrow with his friends....he's just worn out and he's lost most of his hope. I hate it for him. Yet he doesn't complain and he is always so kind and caring towards me...thanking me for the meals I make, taking the trash out for me, giving me hugs and telling me that he loves and appreciates me.

The doctors tried to taper off on the steroids but I could tell that David was not handling it well. His eyes and his face got puffy, and not puffy like he gets from steroids. It looked more like fluid retention. His eyes were really bleary and he seemed out of it. I noticed that he wasn't talking very much either. So we increased the steroids again. He says he feels a little better now.

New Years was really hard for us. Looking back on 2011 is so painful to me, and I am afraid of what 2012 holds for us. David and I just stayed home by ourselves all night. My husband works graveyards, so he wasn't home. David and I went to bed early but I ended up calling my older son, Dallas (David's brother) and we cried together on the phone. I felt guilty for spreading around my misery, but I rarely talk about David to Dallas. Dallas deals with David's situation by using the ostrich method. You know, burying his head in the sand. I just usually let him, but not last night.

I am going to try to work hard at regaining some measure of hope. I don't know exactly how to go about that. It would be wonderful if our next MRI showed some improvement. I will start looking for some good things and talk about those things and thank God for them. I think I've allowed myself to become too negative. I should have been more diligent about protecting and nurturing hope for David's situation.

I'm sorry that I have rambled on. Writing my thoughts like this helps me sort through my emotions. I think about you and your daughter, and about Julia and Kat, and momsworld and her daughter, and 4theloveofmysis, and Chris_W, and Raani01, and connsteele and her son David, and Girl2010, and kmponder, and Beckymarie and sonfollower, and cdolive4, and Michelle (chicken) and so many more people from this site. I pray for all of you every night. May God bless you all and bring peace and healing to you and to your loved ones.

Love and blessings,
Cindy in Salem, OR

You were mentioning Brain Cancer being hereditary. My Mom passed away in 1984 due to a Stage 4 Glioblastoma. When she was diagnosed they gave her 6 months to live, and she lived for 6 years. I believe she held on to see me and my brother get to an age that we knew her, and understood that she was sick. I don't think she wanted to leave us without us understanding that she loved us and wished she could be here for us! I was 9 days shy of turning 8, and my brother was 11 when she passed away. When I went to UAB (Birmingham) for my 1st appointment, I let my NO know this, and we asked could it be hereditary. He said that there is no evidence that it is, but that the room he came out of before he came into my room had a Mother who was just diagnosed. Her son had died of a Brain Tumor not even two weeks before she was diagnosed. I spoke with that woman while we were waiting on our MRI's, and she said that she had taken care of her grown son through this, and now she was going through the same thing. My Brother and I participated in a research thing they were doing at UAB, but never heard anything from it. I will ask them when I go for my follow up on the 18th. The NO said he still does not feel it is hereditary, but that going from one room to the next had him questioning things. I hope and pray every day that it is not hereditary. I will be sure to let you know what they say after my follow up on if they think it could be or not!

Always in my prayers!

Reading your post, I'm wondering too if brain tumors are hereditary. Our son (age 34, two brain tumor dxs: first one was a medulloblastoma, diagnosed in 1985 at 8 years old; then in April 2011, diagnosed with AA3 at age 34.) His paternal grandfather died of a brain tumor in 1968. This was before I had met my husband but from what his mom has told me, the surgeon just opened his dad up, saw that it was bad, and closed him back up. No treatment or anything. Of course, back then, I don't know how much they were able to treat brain tumors. His mom doesn't even know what kind it was. Maybe today, he could have had treatment and lived longer than 9 months.

I wonder if instead of being hereditary, it's some environmental factor(s) that family members were all exposed to... drinking the same water or living close to a toxic waste site or radiation exposure from some unknown source?

You know my Brother and I were talking, and there are different types of chemical, concrete, etc. plants around our area. They had us send in Water Samples from our homes. I can name 6 people that I know including myself and my Mom that was diagnosed with a Brain Tumor in our area. Really makes you wonder... They did this research back in 2009 when I was diagnosed, and I really never thought of it till I read the posts about it being hereditary. I am definitely going to ask them when I go back.

Michelle
Mobile, Al

When we went to my sisters first appt. The doctor listed off some conditions that would make it hereditary. Which we didnt have.He said that the hereditary link were to those conditions. They said a blow to the head or expose to some chemicals, or it just happens they dont know why.

Hi Cindy Sue:

Thanks for sharing your journey. It does help to learn what others are doing and also just knowing that someone else really really understand our situations. Sarah had her MRI in December. Seattle left me a voice message saying it was good. But, later on the NO called and said they do have two spots they are watching, the same ones they have been watching. After I spoke with her, I did not feel like the MRI was good. She has thrown in the towel and we are not even done with the race. That is what has caused us to watch to search again. Our plan is to stay the course on the current treatmet but have future plans. Like you said be proactive.
My heart hurts for you and David when I read your posts. And sometimes I am full of fear - what does 2012 bring for all of us? 2011 was a doozey for us. My father-in-law passed away in December. My first born was all set to graduate with honors was diagnosed with Brain Cancer on Februay 4, 2011. The worst day of my life. I will never get over that night.
The one good thing is my faith has grown tremendously this year. I have faith!
I know what you mean about the ostrich. My ostrich is Julia my middle daughter. She is 16. She is running so far and so fast from this whole situation. But - it is quite painful for Sarah because she missed her sister's company. I am thinking that we should do MD Anderson. Have you heard anything about them?
We say prayers every night for everyone suffering from brain cancer, all cancers. I DO believe 2012 will be better. I know that God has something good planned for all of us. I am claiming it Cindy Sue. Happy New Year. I am happy that David improved so much.
Edna

Please leave me your your personal email address. We tried all of these places....

Hi:
I left mine earlier. edna@camai.com. Thanks.

Alutiiq Mom/Edna

Hi Edna,

My boyfriend also has a Grade 3 Anaplastic Astrocytoma diagnosed September of 2010. He has done Gamma Knife, radiation, and took Temodar and is still taking Avastin. We live in Miami and this is where he does all his treatments (UM/Sylvester). We have traveled to MD Anderson in Houston and Washington University in St. Louis. We had a terrible experience at MD Anderson. We made all those travel expenses for them to tell him 3-5 years and there is nothing else we have besides what you are doing. Very disappointing. So personally I would not go to MD Anderson for a 2nd opinion.

My boyfriend is doing really well. The tumor is stable and had not grown since. Its been about a year and a half now. Back in November he did a PET Scan which the insurance wanted to deny and it came back cancer free. That is amazing! All I have to say is have FAITH! God does do miracles if you just believe.

Stay positive and fight the fight. It seems like you are positive.

God bless you and your daughter.

i'm going on 4 years plus and my mri's are totally clean. don't listen to any diagnosis just plan on being around like everyone else. i'm 43 and going strong -you got this

HI:

Thank you for keeping HOPE alive! We need to hear that on this website. God Bless you.

Edna

I am so encouraged to hear that you have made it over the 3 year mark. That is so awesome. I was dx 05*01*2011 with GBM grade 4, I am 47 years old and this is actually a hereditary cancer for me. I have Lynch Syndrome. I feel a little bit like a walking time bomb, just waiting for the next cancer to show its ugly head. I have had uterine cancer in 2010 and a small colon cancer at the beginning of 2011. All are part of the Lynch Syndrome.

My current doc did not give me a timeline, just said that this is a very aggressive cancer that is hard to stop.

I think that I am doing so good by the Grace of God alone. Right now I am on Avastin and Temodar. I try to walk every day. It is so good to get outside and do a little exercise.

Take care,
Lora

Yes it is possible to survive this. In the beginning I didnt believe it. Would like to chat with someone experiencing the same challenges

Hi;

Thanks for sharing your story and giving us hope. My daughter is finishing up her 12 months of chemo. We are in month 8. She had it in the left frontal lobe. Do you mind if I ask some questions? If you do mind, you don't need to answer - that is ok. But, I was wonder where your tumor was located? What treatment did you get? Where did you receive treatment? What are the challenges you speak of?
This a rough illness and road. My daughter is tolerating her treatment so far. Thank God. We are faithful believer. I send you God's blessing today.

Edna

Thank you Christy! I also agree! It's not a death sentence unless you think that way. You can go through life thinking that about everything... I choose not to live my life that way. I think a positive outlook on things goes a long way in every area of your life, especially cancer!

I'm 30yr old, single, no kids, was diagnosed in march of this year with anaplastic astrocytoma, grade III. My tumor was in my right frontal lobe. Had surgery,after surgery my left side didn't work(kinda like a stroke)inpatient and outpatient rehab,radiation/chemo, and now i'm on chemo. about to start my 3rd month out of 6. I haven't returned back to work or school. i want to but my energy is random and my profession is a high pace job (x-ray technologist)I'll get back there, soon enough!
Glad to hear your newphew in law is doing well! He'll be fine with many more years to live! :)

My brother was diagnosed with an anaplastic oligoastrocytoma WHO Grade III two weeks ago. Intraoperatively they did not take it all as they were afraid of permanently damaging his motor cortex leaving him speechless. So tumor remains (they also thought it was a GBM Grade IV on cold path in surgery). Anyway - we have just seen the oncologist two days ago and now she says they have decided on whole brain radiation - which I do not understand as this is usually reserved for metastatic cancers - I was under the assumption that they would use fractionated focal radiation and Temodar (which he will start).
He is 43 and has 1 11 yr old son. Unfortunately he made his living talking and has slurred speech now.
Does anyone have experience with whole brain radiation in these cases? And how do you all feel after your chemo and radiation starts - I do not have any experience with Temodar - how well is it tolerated - what can I tell him to expect? All advice / information appreciated. Has anyone had to move forward and use self-directed tumor vaccines made from their own tumor? They have held his tissue for this purpose.
Thanks - I am caring for him for the next 2 weeks from out of state - do most of you resume normal life and jobs during chemo/XRT?

I got missdiognosed in 2000 I was 30 I was sent to a specalist with my scans,,I forgot to say I was having seizures.when I went to this so called specialist he tells me he's got good news n bad news.He says the good news it's an aracnoid sist the bad news is we don't know what's cauasing the seizures.I tell him I boxed as an amateture he replieis that could be it.I asked what now more tests?He rtells me half the people your age that start having seizure out of the blu like you are go throught the rest of there life not knowing why they just controle it with meds.I looked at it like I always knew this was gonna happen to me some day partying like a rock star like i was.So i had to take 500mg of dilanton every day n 7 years later I find myself in prison for manufacturing marijuana.Long story short I get properly diagnosed had 2 surgeries the fisrt went fine but they only got 30% of it a week later they went in and got the rest after that I wound up paralized couldn't even speek but all the scans shwed no sing of tumor after 6 week of radiation+Temedor so I cntinude to take thr Temedor.At this point I though I had it beat only to find when I got out that there's no beating this type of cancer I have and every med. I take my body eventually become amune to.So after taking the Temedor all sort of diffenent ways i went on to intovenouse chemo what seems to work Evaston it's now 2012 n I haven't had a treatment in a good three monnths that's just me evston is working for I seem to hadnle all the meds. they through at me including the Temedor I never lost my hair or anything.

I had nearly the same thing.I am a 22 year old male. I had a anaplastic astrocytoma grade III in my front right lobe. They told me going into surgery they did not really expect my left side to function after surgery and there was a very high possibility of me not having any personality after surgery either.The surgery was done the day after a seizure that led to the University of Iowa hospital where the surgery was done. I have done great since surger That was August 28th of this year. I have problems with pain in my left him and it gets very sore. The chemo is in full swing and so is the radiation. I am very sorry to hear your left side has had problems. How are you doing now? I am just trying to get through the treatments and see where we go from here.

You have what my 19 year old brother has as well. He is in full swing with the radiation and chemo... he has problems with his right side, and his tumor is inoperable. Have you tried any clinical trials? We are currently searching options for that...

Hi:

I am just beginning a search for trials, were you successful in finding one?

hi
my 6 year old son just completed treatment for anaplastic astrocytom grade 3. we joined a clinical trial since standard treatment (tamezolide) is not so promising. Thank G-d we just finished and his last MRI came back clear. Dr. Dunkel at memorial Sloan Kettering is conducting this study- I'm not sure if you fit the criteria for the study- or if the study is still 'open' but worthwhile to look into. I keep reading about people who had AA- but they were all adults- if anyone has information about a young child I would love to connect with them.

good luck

Can you tell me what type of clinical trial was done? I know a young boy that is going through a clinical trial and I would love to hear a success story if it's the same one. What did you son have done?

Want to connect with goodboy regarding dunkel trial

Dear Goodboy,

My 6 year old cousin has ananplastic astrocytoma, grade 3 with grade 4 characteristics. It would be so helpful if you could speak directly with the mom. Is that possible? They are coming to NYC on Wednesday and slated to see Dr Garvin at Columbia Prebyterian. I read your comment and felt hopeful that Dr Dunkel at Sloan Kettering might also be helpful. Any more advice? The mom is distraught. I don't know how to comfort her. Please let me know if you feel comfortable speaking with her.

Concerned Cousin :-(

Hi:

My 17 year old daughter has anaplastic astrocytoma and had a tumor on left frontal lobe. She had surgery, and radiation and chemo. Now we are in the maintenance phase of the chemo, which is for a full year. This treatment is make her so sick she can hardly function.

What kind of treatment did you have and how are you doing?

Thanks for sharing.

From: A concerned Mom

Hi,
My 17 year old son was also diagnosed with A astrocytoma III. It was a small tumor by his
thalamus. It was removed by an amazing surgeon. He had surgery in May, Proton radiation therapy for 6 weeks and is currently on his 3rd round of Temodar. (5 days per month, after taking it with radiation for 42 days.) His tumor was very difficult to diagnose and they are now certain it is from previous radiation he has had from two other tumors at age 5 and again at age 12. Hi MRI is clean at this time and he has no deficits at all. He is doing well on the temodar(fatigue, nauseated but controlled) Blood counts a little low but not bad. What is the dose of Temodar(if that is the chemo) my son takes 360mg per day x 5. Do you give her anti nausea meds? My life has been devoted to taking care of my son with Cancer and he truly is a walking miracle. He will continue with the chemo for about a year and have MRIs every two months for a while. Prayer, family and faith has helped us and I hope it can help you too.

My best to you and your daughter.

dd

Hi Dimond:
My daughter is doing better. We switch oncologists and that made a big difference. The new doc gives her a little decradon with the infusion and that seems to help the nausea.
Sarah is on the same plan for Temodar. She takes an infusion 2x a month and on the last infusion we take pills at home for five days. The temodar is 400mg. a day. The infusion is Avastin and Irinetecan.
Today, the doc said she wants to stop the Temodar because Sarah does not tolerate it well. We are very afraid to do that. We have had two good MRI's. We are supposed to follow this plan until next May, but now they want to stop the Temodar. What do you think? They think it makes her too sick and they cannot say for sure it works. They know the Temodar works inconjunctin with the radiation, but apparently no studies have been done on this part. Please let me know what your doctor says. Sarah has the Anaplastic Astrocytoma 3 too. God's blessing to you all.
Edna

my daughter took the temodar along with the radiation and the cancer came back. She was on a treatment that included avastin and she has been cancer free for almost 1 year. Good luck in making the decision to stop temodar, I know it is scary. When I had to make the decsion to cut down to partial treatments for my girl I was very scared but I had to take a good look at her and see what kind of quality of life she had, missing school all the time, being sick all the time etc. Not knowing what the future holds for her, I want her to be happy and healthy now. I want her to enjoy herself and have fun now. If you believe in prayer, God will help you make the choices you need to make and he will also let you be at peace with those decisions

hi, my name is Lourie, i was just diagnosed with a high grade 3 astrocytoma. I start radiation and chemo pill this tuesday, the 21st. I first got sick in June. This has been a scary experience. I am a bus driver, but of course i cant drive right now, but i am an aide on the school bus now. I hope to eventually go back to driving. They say i will do radiation and chemo for 6 weeks then continue chemo for another 6 months. This is my first post, not sure how this works, but ill learn.

If you dont mind, can you tell Nancy and I about your nephews tumor? How big was it, where was it located? After his initial chemo and radiation, did he continue chemo, and if so, for how long?

His tumor was in the right insular (pushing on the temperal lobe) and was about 6 cm, about the size of an egg. He had surgery to remove the tumor and doctor's believe (from before/after) tests that all the tumor was removed. His surgeon felt like it was a grade II, but when the pathology came back, the radiologist graded it a III.

They called a meeting of the Tumor Board and the majority decided a grade III. He had six weeks of radiation and the doctor's recommended no chemo.

He's done remarkably well; he needed very little physical therapy. He's past the six month point and is back at work and driving. The doctor's have been up-front about the potential return of cancer and had said he will have chemo then.

He's very upbeat and positive, but of course, sometimes it hits him. They have a three-year-old son and you can't help but think about the future. Their faith is very strong, and we all know how very blessed they are.

He recently said he wished he could find someone who has done well and survived past the diagnosis. He has not been willing to attend support group meetings so none of us have pushed it.

I posted wanting to try to find someone who might be willing to talk to him by e-mail ... and just want to pass along the information. I don't know if he will do it, but want him to have the opportunity.

Through this journey, I try to support, encourage and pray. Thanks for your help.

my tumor was the size of a golf ball, and was in between a 2 and 3 also, however, my drs. decided to go ahead with the chemo also, I took it all through my radiaiton and am half way through the 6 month plan of 5 days a month. Nancy and I have talked through email--I am more than happy to talk with him if he wants to talk to someone--my email is csnelling1@neb.rr.com.

I have not been to a live support group either--just this website and the national brain tumor foundation. I since have met 2 woman at my work who have had benign brain tumors and we have spent some time talking about our situations too.

Your nephews case sounds alot like mine.

I had my surgery June 3d of this year at Duke medical U in NC. They had hoped to get 60% of the lemon sized tumor. Only I started to bleed out on the table they had to stop, give me a transfusion on the table and another in Neuro ICU. After a 2.5 week stay in the hospital(mostly ICU and partly on the vent) I was able to stay at a hotel in town and then finally go home. Six hours away.

I started on 6 weeks of radiation Mon-Fri. Along with oral chemo(temodar)
They estimated they removed 40% of the tumor by surgery and I went in for my first MRI since surgery last month. Seventy percent is gone! The only damage I have from surgery is mild nerve damage in my skin at surgery site. Thank God. I also have a strong faith and am a mother. My son is five years old. I'm continuing with the oral chemo 5 days on 23 off. Probably for at least a year. My next round will most likely be pushed back though, my white blood cell and platelet count dropped big time this week. So...we'll see how that goes. I will most definitely keep your nephew and your family in my prayers.

This sounds so like me I was diagnosed with aa111 on Feb the 14th this year had surgery on 23 march they got 95% out it was top right and superficial recovery was ok had 6 weeks of radio no chemo they said they would use it later if necessary this has ripped my world apart I'm 33 years old and have five fantastic kids oldest is 14 youngest is 4 I'm so so scared I just want to see my kids grow up ... This is a nightmare I finished radio 7 weeks ago apart from being bold and being tired life is as normal as it can be .. I go for my MRI first week of October and I'm praying so hard that it will be good I live in wales uk x

good luck with your MRI. my only child 13yr has AA3 and it has been a long road, She was diagnosed March 27 2010 and has been through 4 brain surgeries and multiple other surgeries related to this evil disease. On a brighter note, She just had her 4th clear MRI. no evidence of disease. 10 months cancer free. Don't give up. this is your new normal and that's ok, what is normal anyway? everyone has something to deal with, this is our thing. One day, you and my daughter will be wearing something that say 'Brain cancer survivor'. Stay strong and never give up hope. Everyday there are new things being discovered for this and I have faith that God will take care of all of us

Thank you so much for your kind words they really do help I'm having good days and bad days reading the Internet sire doesn't help exept this site which is full of hope .. I just can't help thinking what If ..... I just want a good MRI result I'm getting married in 11 days to my long term partner I just want to spend years with him and my kids 6 weeks today will be my first MRI since my radio finished 7 weeks ago ... Hope your daughter is doing ok xxx

Hi:
I remember we blogged before. How are you all doing? I hope you are both doing well. I cannot remember if you told me the medicine your daughter takes, do you mind telling me?
My daughter is taking two infusions a month of avastin and Irintecan. Then we take 400mg. of Temodar for five days a month. They want to stop the Temodar because it makes Sarah so sick, but I am scared to stop it because we have two good MRI's. What have you heard on Temodar? Thanks for sharing and God Bless you both.
Edna

please read my profile hope it helps

HI:
My 18 yr. old daughter is doing chemo for Anaplastic Astrocytoma III. It is very hard on her to do the chemo. She cries a lot and is sick a lot. Where can I find your profile to share your survivor story? Thanks for sharing. God Bless.
email also is: edna@camai.com

Hi:
I clicked on your picture and it took me to your profile that gives your background. Thank you for sharing that. I am very happy that you are doing well. God Bless you and your family. Thank you for sharing and giving hope to all.

Janet, my name is Lourie. I was just diagnosed with a high grade 3 astrocytoma. I first got sick in June. Had open brain biopsy on Nov 9, 2010. I am 41 and i have a 22 year old son and my daughter just turned 15. This has been a real scary ordeal. I feel for u and will keep u in my prayers. They are starting me on radiation and chemo this tuesday the 21st. I will do that for 6 weeks then ill continue chemo pill for another 6 months.

please read my profile hope it helps

Hey
My husband was diagnosed with anaplastic oligoastrocytoma grade III in May of this year. He had surgery, radiation, and chemo as well. He is 34 years old and a principal of a middle school. He has not missed many days of school, so we are extremely blessed. He is not very positive about this disease. I try to encourage and tell him to have Faith. Easy for me to say, I guess. The reason I am writing is there is a great book called, Healed of Cancer by Dodi Osteen. It is a great book about healing. Also check out carepages.com for other people that are dealing with brain cancer. Our oncologist and radiologist are christians and have said many times that the attitude and faith of the patient goes a long way in determining survival.

Hello!
Our 25 yr old son David, who is an athlete in prime shape, playing college basketball, starting having migraines in May of 2009. When he started having double vision, his primary care doctor ordered an MRI which showed a large mass in his brain. We were terrified and shocked. He was referred the next day to Oregon Health Sciences University, and he had a craniotomy the next day. His surgeon and the entire operating team were wonderful...they removed all of the visible tumor and the encapsulating cyst. But the pathology report was bad...grade III anaplastic oligodendroglioma. No chromosome deletions so it would be less sensitive to chemo. The doctor told David and us that the median life expectancy is 3 to 5 years. We were beyond devastated. But I'm sure you all know how we felt. David's dr is a huge research dr, well-respected in the brain cancer field, but he lacks in the human relations dept. A total hope-destroyer. But we believe in God and would far rather trust in God than in human predictions. This is fact...the doctors DO NOT KNOW when someone will live and when someone will die. They are wrong so many times. They look at case histories and at statistics and then they make the best GUESSS that they can. The last time we saw that dr., he asked us if we had any concerns or questions or comments and I told him that we were okay but we needed him to not take away our hope. He acted surprised and said that there is a lot of hope. Quite a switch from when he first told us that David had brain cancer.

We have a friend who was told he would die in 6 months from pancreatic cancer... a different kind of cancer, I know, but a very deadly one too. That was 10 years ago, and he has been cancer-free all this time. He has really encouraged me a lot. I have also read lots of survivor stories at http://sites.google.com/site/glioblastomamultiforme/survivorlinks and there are lots of people who have brain cancer and who beat the odds.

Just some info about David. He had the surgery to remove the tumor. Made an amazing recovery. You would have never known he'd been sick. No deficits or handicaps from the surgery or the tumor. After he recovered from the surgery, he had 6 weeks of chemo and radiation. He was very weak and tired from the radiation and he lost his hair, but other than that, he tolerated that treatment pretty well. He says that he doesn't feel as sharp as he used to, and that he doesn't remember details like he used to, but I think some of that is from the stress he feels. He is a computer expert and he's always helping me with stuff, and he's lightening fast and very smart.....I don't think he has any problem with memory or learning stuff.

David had his last radiation treatment in July. Now he takes chemo (Temodar) 5 days a month. It's a much stronger dose than when he took it during radiation. His hair grew back and he's doing really good. His issues right now are stomach trouble from pain medication, bad headaches, insomnia, and nausea when he takes the chemo. He is seeing a headache specialist right now and hopefully she will be able to help with the headaches.

David will stay on Temodar for the rest of his life, or until (IF) the tumor comes back. He has had 3 MRIs since his surgery and there is no sign of a tumor growing back. His drs are all very pleased. David is working and playing basketball and golfing and riding his mountain bike. He's skinny and he's lost a lot of his muscle, but if you met him, you'd never know that he's in a fight for his life.

God has been so good and so faithful to David and to our family. We are praying for David and holding on to hope. Our God is an awesome God...no matter what the outcome is.

My friend with the pancreatic cancer said that his oncologist told him that some people, according to all the statistics, should die but are still living and are doing good...and the doctors do not know why. They just are. And that dr also told him that as long as someone is breathing and is alive, that there is hope. And I believe that is so true.

We are not even one year into this, so I don't know how encouraging our story will be to people. I hope that there will be some seeds of hope planted in you by my note or by the notes of others. I am glad that I found this website. I need all the encouragement I can get.

love and blessings,
Cindy in Salem, OR

I am a 43 year old healthy single mother. I still have a 15 year old at home and have a grown son who has two sons, one being born less than 24 hrs from the time of my diagnosis. I was diagnosed late september with a grade 3 olioastrocytoma. Mine is infiltrating in nature. I wonder if anyone else had an infiltrating tumor. They don't believe they can do surgery on this, however, my neurosurgeon is still trying to figure out a way to do at least a partial resection. I did geet 2 second opinions without much else to offer except for radiation and chemo with temodar which I have had each for about 1 week now. I currently have no physical deficits, which has amazed everyone, as my tumor is very large. Most tumors they would have to measure in cm. Mine they didn't even try, just saying it is large. It would defenitaely have to be measured in inches. It orginated in my Cingulate Cyrus (mid brain) and gone into my right frontal lobe and bilateral temperol lobes. I had been having problems with focusing of my eyes, and short term memory problems and slight balance issue that came and went, but other than that no signs. It was a spot in my right visual field that sent me to the doctor. They think possibly I have had this tumor for as much as 15 years. So wish I would have found it years ago and did the treatment then. I have been fortunate to have no real deficits. I am still working out everyday before my radiation treatments. Has anyone else had surgery on an infiltrative type tumor? if so, how did things go? I have been doing research on eating alkaline and other healthy eating, does anyone have any experience with that as well? I am open to any suggested adjunct type therapies, and depending on how traditiional treatment is going, I will entertain drug studies. Anyone have any experience with Avastin? It is typically used with Glioblastomas, a stage 4 tumor, but my doctor is willing to give it a try when the time is right. (per my suggestion)

Good luck to you all in your fight! Deb in Springfield, IL

i would love to be able to talk to you cindy sue to you. u would be an inspiration to me, u already are. thank u, maybe somehow we could get in touch

i'm here if you need to talk see my profile

I am so glad to hear that your are doing well and are 5 years cancer free. My husband just finished his chemo treatments and took Temodar also. He also takes the Depokote for his seizures and has not had any on this medication. It gives me great hope that you are doing so well. My husband seems to really worry. His next MRI is in a month. I just know that everything will be great. Everyone, please keep the encouraging stories coming.

Hi,

I was given hope by your 5yr cancer free report. I hope you are still doing wonderfully. I was diagnosed last October, and have been doing pretty well post surgery and radiation.

see my profile and keep the faith

i would like to know , if you don't mind .
are you able to work and do every thing you pleased?

My daughter was diagnosised with anaplastic astrocytoma in Nov. 2009, after surgery to remove 95% was done in Oct. She has now went through the radiation and is still receiving Chemo. What did you receive for treatment with your diagnosis? We are afraid everyday that it will not stop, that it will return, your story is one of the few I have found that is close as far as age at diagnosis. She had no symptom until a focal seizure occrred in her left arm, the tumor was in her parital lobe 6cm x 4cm, thought that they got 99%, until diagnosis came back and then small area next to it became a concern. They are treating this area as cancer however could also be normal brain tissue. I know that pathology is important, and she had a gain in 1p and 19q no losses, and no visual other abnormality other then the p53 factor. Do you know what your pathology was? Please if anyone is able to help with information, it would be so helpful, she is 15yrs old and scared. Not to mention how scared MOM is!

Hi Megansmom:

My daughter is 18 years old with AA3. She was diagnosed at 17. She had surgery, radiation and is finishing chemo. How is your daughter doing today? I hope you and your family are doing well. God Bless you.

Edna

Yes ! Thank you for hope. My daughter was just diagnosed this year and we are full of fear. We are believers and have faith, but still get scared.

I am sorry that you feel tired and unmovtivated, but I am happy to hear of your longetivity. Did the the year of chemo make you really sick or was it ok for you? My daughter is so sick from her chemo.

Also, was your first MRI after radiation a clear one?

Hello OCMenno:

My story is very similar to your wife. I was diagnosed 9/08 with AA-III and my tumor was as big as a tangerine. I was given 33 radiation treatments along with the chemo. I am now finishing my 5th month of chemo and doing well with all the side effects. Although, I am 25 years older than your wife is, I know how she feels about her well being and family.

I have two girls in college and I pray everyday to see them in their chosen profession and one day see them married. I pray everyday, that the Lord gives me this time to celebrate with my daughters. I know it is hard to stay strong, but when I see how my daughters and husband take care for me this gives me the strength to fight this disease.

My youngest daugther told me a story about a co-worker, her Mother told her to move out. Her friend came to work and unloaded all her problems that she was having with her mother. My daughter was a good friend and held her while she cried. (Sometime, we just need to be held) Her friend asked my daughter about her relationship with me. My daughter told her about my cancer. Her friend asked her, why are you so strong? She replied, "Because my mother makes me strong." This is how I want my family to remember me as a positive, funny and always smiling mother and wife. I know I will always be in their hearts.

My brother died of bone cancer at the age of 22. He was never married or had any children. Look at your blessing your three children. Keep a positive face and let her cry and speak her mine. She needs an outlet and you have to be her strength, for her to be strong for you and the children. After all, these are the times your children will remember, what a positive person she is. The gift of keeping positive is what will hold them together during their rough times in their lives. Since the baby is young, take video and record the great moments. Have her keep a diary.

Make everyday a special day and do not worry about what you or your wife cannot control. Leave this in God’s hands and the wonderful Doctor that he guides. OCMenno, we cannot determine our future, we can only live in the "Now". Let your wife go and cry in private, it maybe her outlet to reflect, especially with the next challenges!

I have your wife and your family in my prayers. Please keep us posted and never loss faith.

God Bless,
Priash

I'm praying for your wife, I have the same type of tumor ( just got diagnosed this past week ) I'm ready to fight this disease, for my kids, they are 2 & 4 yrs old, I cannot leave them right now. I know that GOD will help me and your wife go through this fine.

Hi Iam new at this I have been reading about your story for quite some time, how is your wife now, my sister she has the same and now she is taking her chemo pills this is the 3rd month, doing not bad but 2 days ago she start feeling kinda lightening in her head it could be a small seizure, did your wife experience any symptoms like that, its been really hard for the hall family we are really close and she have 2 young children 8 and 9, Iam always praying for miracles could you tell me a little more about your wife now and what the doctor usually say and do u know most people if they out ive the the 5-to 10 years thank you so much, Iam praying for all the people suffering from this evil sickness.

please read my profile if i can help please feel free to e-mail me

PBJ Austin,
Good for you for being so active and finding this board so soon. I wish I had found it 3 years ago. I waited too long before I started looking for positive stories of hope and survival. The first thing I found on the internet after my wife was diagnosed in 2006 was all about the statistics (most of them far out-dated). I couldn't help but think, "she's going to die...soon, the rest of her time here will be miserable, our children will no longer have a mother, I will grow old alone, etc.". Yes, it is true that this is a horrible, deadly disease, and many lives are cut short, but it is wonderful to see that there are so many people surviving many years and encouragin one another. I thank God for that. We can all learn from each other here. There are times that are almost unbearable, and there are other times that everything is just great. I know it's easier for me to say than most of you, since I do not have the cancer myself, but I just like you to know that I share these things with my wife, who can't read, and it truly does strengthen her to hear about this hope. We also have a strong faith and a lot of support from friends, family, church, even my co-workers and bosses, and all of you.

Thanks

please see my profile and keep the faith

Hi

My son is five years cancer free from a grade II astrocytoma. I have even written a book called, "Michael's Journey" to inspire people and families like you.

He was 13 at the time and is now 18, cancer free and loving college life!!!

Laura (Michael's Mom)

Hi everyone,

It was nice to see your messages here. I too was diagnosed with this (an Anaplastic Astrocytoma grade III) last month and have good and bad days in terms of keeping my spirits up. I had surgery mid-March and am due to start my radiotherapy today. Your notes have given me some strength. Look forward to chatting more.

Thanks
Yvette

Hi all,

Yvette, it sounds like we are in the same boat--I was diagnosed with AA-III in late Feb. There was one complication, though, I was 28 weeks pregnant. We decided to wait till 32 weeks of gestation and then induce. Within a week of delivery, I had neurosurgery to resect the tumor. I've now completed radiation with Temodar, the one month rest period, and the first of 6 rounds of Temodar.

Are you feeling decent lately? What stage are you at?
I haven't reached out to anyone until now.

Best,
Trina

My husband has been diagnosed with the same. He was diagnosed 11 years ago and was tumor free until may. He recently had tumor removed and is doing well. He has just finised his first round of temodor. He has is ups and down days also. Keep your head up high and dont let it get the best of you. Keep fighting every day. God Bless YOu.

would love to chat with you

My husband has been diagnosed with the same. He was diagnosed 11 years ago and was tumor free until may. He recently had tumor removed and is doing well. He has just finised his first round of temodor. He has is ups and down days also. Keep your head up high and dont let it get the best of you. Keep fighting every day. God Bless YOu.

Hi KellBell,

Thank you for your comments. My brother was just diagnosed with the same as your husband and he is going to get radiation and chemo pills. How is he doing now; great I hope!

Thanks,
Marcel

Hi KellBell,

Thank you for your comments. My brother was just diagnosed with the same as your husband and he is going to get radiation and chemo pills. How is he doing now; great I hope!

Thanks,
Marcel

Hi KellBell,

Thank you for your comments. My brother was just diagnosed with the same as your husband and he is going to get radiation and chemo pills. How is he doing now; great I hope!

Thanks,
Marcel

I was diagnosed with level 3 astrocytoma glioma after my biopsy/resectioning on 8/6/10.
I'm reading this amazing book called, "Anticancer A New Way of Life". Initially I was so thrown off. I thought I was being given a death sentence. Now I get it. This tumor will have to be managed with radiation (I just finished week 2 of 6) and chemo (temodar). I'm not going to die anytime soon from this thing. I'm only on page 43, but the doc (David Servan-Schreiber, MD, PHd) who wrote this book has been fighting/controlling/beating brain cancer for 15 years. I can't recommend it more highly.
best,
Karen

My wife was diagnosed in 2006 with Anaplastic Astrocytoma Grade 3. Surgery, radiation, chemo, you know the drill! Things remained stable until recently. The tumor is back, same location - only deeper, golf ball size in the right parietal lobe. She has been having problems with balance, vision, and weakness in the left side of her body.

She is scheduled for another surgery on Monday July 27, 2009. The doctor's say the risks and the outcome should be about the same as the first time. 2006 was a very hard year but I'm hoping this time, knowing what is going on now, things will be easier. I have heard that when tumors come back, they often come back a higher grade. We are praying that that is not the case and everything will go well. 2007 and 20008 have been 2 of the best years of our life.

The team at the cancer centre told us last week that my wife will go through chemo again after the surgery. It will most likely be a different kind of chemo. She was on Temodar last time. Strange thing is, at that time we were told that Temodar was the very best chemo for this type of tumor. So, does that mean the first time they tried the best, and this time they will try the second best?

Anyway, we will take it one day at a time and continue to walk with the Lord. Our faith has only gotten stronger these past 3 years. Our 3 children (now 9, 8, and 3) also help us keep it together.

Please continue to pray for us, as we do for all of you!

Thanks for the update. You were the first person to greet me when I joined this board and I've been wondering how things are for you and your wife. I will mark my calendar for July 27 and your family will be in my thoughts and prayers, as well as everyone else on this board.

Thanks! It means a lot to me. We have a great support network with our family and friends in our local church as well as other fellow brothers and sisters in Christ. There is something extra special about sharing with others like you, that know what we are going through. I will do my best to submit an update as soon as possible after the surgery. Next week will probably be out of the question but hopefully shortly after I can spread the good news of another successful operation.

While we continue to stay strong and hope for a full recovery some day, my wife and I continue to accept that "His will be done", even if we don't understand it or like it. If she does not live a full life, I'm sure something good will come out of it.

When the apostel Paul asked 3 times to be healed of "a thorn in the flesh", God replied, "My grace is sufficient for thee; my strength is made perfect in weakness".

Thanks again and God bless!

My wife had her 2nd surgery on Monday July 27th. The surgery lasted 5 hours and went well. She was actually able to go home from the hospital 2 days after the surgery. Amazing! Praise God! She is at home taking it easy. Medications, frequent naps and help with the main daily tasks seem to help tremendously. We now wait for the cancer centre to call us in to discuss chemotherapy again. In 2006 she was on Temodar but will start a different type of chemo this time. We were told a couple weeks ago that it would most likely be "Lomustine", also taken orally. Perhaps someone has experience with this type? Strange because we were told in 2006 that Temodar was the best thing for brain cancer, the only chemo that could penetrate the BBB, etc. From the little research that I have done on Lomustine, it sounds like this is a much older form of chemo and not much success with it. Any info would be great.

I can't provide any info about the new drug but I hope someone else can. I'm very happy about your wife's surgery and that she's already home, YAY!! Please do keep us posted on how her meds work for her and how she is doing. And take care of yourself as well.

HI:

My daughter also had her AA3 on the left frontal lobe and they could not remove it all. Do you mind if I know what hospital and doctor? We live in Alaska and travel to Seattle currently.

Hi:

Our 18 year old daughter has Anaplastic Astrocytoma 3 in 2011. She had surgery, radiation and it currently doing chemo. I am checking in with people who were diagnosed before her, just seeing their treatment, quality of life and how they are doing overall? Where was your husband treated? I hope he is doing well. God Bless you.

Edna

My brother was diagnosed with an anaplastic oligoastrocytoma WHO Grade III two weeks ago. Intraoperatively they did not take it all as they were afraid of permanently damaging his motor cortex leaving him speechless. So tumor remains (they also thought it was a GBM Grade IV on cold path in surgery). Anyway - we have just seen the oncologist two days ago and now she says they have decided on whole brain radiation - which I do not understand as this is usually reserved for metastatic cancers - I was under the assumption that they would use fractionated focal radiation and Temodar (which he will start).
He is 43 and has 1 11 yr old son. Unfortunately he made his living talking and has slurred speech now.
Does anyone have experience with whole brain radiation in these cases? And how do you all feel after your chemo and radiation starts - I do not have any experience with Temodar - how well is it tolerated - what can I tell him to expect? All advice / information appreciated. Has anyone had to move forward and use self-directed tumor vaccines made from their own tumor? They have held his tissue for this purpose.
Thanks - I am caring for him for the next 2 weeks from out of state - do most of you resume normal life and jobs during chemo/XRT?

Hey Fusionera, It is so good to hear some of these wonderful encouraging stories. I was just diagnosed with a high grade 3 astrocytoma. I dont have a lot of understanding bout all this. but im trying. It has all been so scary. I start radiation and chemo pil on tuesday the 21st. I have heard good and bad stories and dont know what to expect. I first got sick in june. i was a school bus driver, now i am an aide on a handicap route. I hope to be a bus driver again one day. I had the open brain biopsy on nov 9, 2010. There are so many people with the grade 3 astrocytoma.

I am a 23 yr old who was diagnosed with a lemon sized, G3 Astrocytoma in the Fall of 2010. Since then, I have undergone surgery at MD Anderson and 6 weeks of radiation. I am doing great now and gaining my strength and independence back. My last scans looked good, but I have not heard too many long term positive outcomes. I am also a graduate student working on my Master's of Physician Assistant studies. I will begin school again in a few months, and am eager to see if the surgery and radiation have affected my cognitive abilities. Thanks for sharing your positive story! I will be receiving MRIs every other month to make sure there is no more growth.

this is amazing Fusionera. there is still hope i kow but it is good to hear . doctor said they could never remove my tumor cause of its location. said i would have this the rest of my life be on temodar and seizure meds rest of life too

Hi:

Thank you for sharing your story to give us all hope. I am so thankful I found this website. Praise be to God that this is available.

Hi Sue, is your husband in remission from AA3? My kid sister has the same and they have indicated remisssion is unlikely. Thankfully my kid sis never believes anything they tell her and she is convinced she can beat this. I love her attitude.

Hi! My mom has a AA III. she was first diagnosed in 1987. she had a surgery then and they got part but had to leave 2 1/2 cm in there. She at the time did the most aggressive radiation you can have. the tumor went into remission and other than certain light effects she has done fairly well. She was told at that time that she had 1 to 2 years to live. It was in her right frontal lobe and whatever was also in there made it rare. That was 22 years ago. The past couple of years she has slowly gone down hill but she has her yearly MRI scans. they have turneds out well. The week before Christmas she had a problem where she couldnt talk , communicate, or even recognize people. I immediatly took her to the er and it turned out the yumor has come back and now is a 4 1/2. She just had surgery for the second time this past Wednesday and we r hopeful that she will recover and be okay for a long time. The problem is she is 59 and weak. I thought maybe you hearing this would give you and others the hope that it doesnt have to be a death sentence and you always have to fight and do everythoing that you can. Keep the faith.

I am glad to hear you are doing so well. It gives me hope for my son he's 18 and is still fighting and trying to find the right drug combo so it will not come back so now we are almost 2 years in and due to the fact that he had a Bone marrow transplant in 1999 for AML it seem very complex in find the drugs that will not be toxic to him. we will be at NIH for a clinical trail. so we are hopful and we keep praying this will work. his PET scan dosent light up with activity anymore so we hope this drug carboplatin will kick its butt. so we will pray for you and please keep my son J steras in your prays too....

Hopeful and greatful to hear from you
God Bless
D Steras

I am going thru NOW what you have already done. This gives me hope.I am 6 months out of surgery....radiation/chemo. combo and went back to work in 3 months...I am taking the "best" chemo pill for stage 3 brain cancer for a year....Temodar.My cancer was enclosed in a massive frontal lobe tumor and my nureosurgeon says he got 99.99% of it.I have had 7 MRIs with all clear results. I do my 5 days on of temodar,kytril,ativan,xanex.I work full-time as a bartender and take my temodar right before bed, so i dont feel sickly. Its just a ruff week.
I know you are looking for someone further out than you....but YOU are further out than me.....so you are HOPE for me.
Thank you.
Be Strong, Live Strong, Pray Strong.

Heather D.

Hi Kit Kat, just a short note after just reading your mail. Well DONE. I am nopw free from this horible thing after been diagnosed with a Gr 3 in 2001. At that time thry told me I would live maybe 12 months. Well they is no sign of it now and all is going well. So mate cheer up its all in front of you. You sound very positive and thats just brilliant. Keep up the good work. Youll be fine.

Ger.

I was diognosed Jan 4th this year, had the surgery Feb 21st. That went well with no side effects. I am currently doing 33 radiation treatments and temodar. No side effects at all yet. I also am doing the steriods and dilantin. Back to work part time 3 weeks after surgery. Hoping for good results as in your case, nice to hear something positive.Keep up the positive attitude and success!!!!!

HI:

My 18 year old has Anaplastic Astrocytoma 3. She finished surgery, radiation and is doing chemo. I am checking on people who were diagnosed before her. Do you mind sharing your location of tumor; treatment; facility and how you are doing today? I hope you are doing well. God Bless you.

Edna

I feel blessed to have found this discussion group. I would like to share my story, then my treatment plan with you all. I look forward to being a part of this support group.

About three months ago I started having severe headaches. I first noticed what looked like Kaleidoscope shapes in my right eye, and shortly after they would stop I would get nauseous and immediately get a severe headache. This happened again a few days later, so my Husband called our Eye Dr. because it was time for both of us new contacts. They got us in that day, and the Eye Dr. stated she felt I was having Ocular Migraines, I got a new RX for contacts as well as glasses, and we were on our way. Not even a week later I was sick again with a migraine and I went to my Regular Physician who was also a Physician that I had worked in his office over 7 years before I changed jobs. So he knows me personally, and he checked all my reflexes, etc and stated he felt they were Migraines as well; however he gave me a medicine for migraines to take as soon as I started seeing the spots so that it may help reduce the migraine pain when it came on. Then again not even a week later I'm sick and have another headache, and this time my neck is killing me as well and feels knotted up. I again make an appointment with my Personal Dr., and he examines my neck and states that I am having muscle spasms in my neck as well as Stress Migraines. He gave me meds to help with the neck pain, but I am not good on meds, and I had to work, so I only took them at night so it was not really helping that week. I took the next week off work to take the meds and relax per my Husband's instructions :) That week off I was sick 3 of the 7 days. I went back to work the next week, and everytime I would stand up I felt I would pass out. I decided on the Thursday of that week I was scheduled off work that I was going to just go sit at the ER to let them do some kind of test or something because I knew something more had to be going on. That Thursday I was dressed and ready to go then said "I will sit there all day and they may not do anything" So I decided to call my Personal Dr. again, and ask him if he would just schedule me some tests. They office told me he would be out till Tuesday, but they would leave him a message. So I was waiting till Tuesday now. Well ad fate had it, Monday night my 2 year old woke up crying so I went and laid in her bed to get her back to sleep at about 3 AM. As I laid there with my arm on her getting her back to sleep I felt the worst pain in the front left side of my head. I honestly thought I was having a Brain Aneurysm, and was wondering if I should get my Husband. It eventually eased and made me feel a little less worried about aneurysm. By the time it was time to get up and get dressed; I was nauseous and could not force myself to get dressed for work. My husband said we are going to ER. He took our baby to Pre-School, and came right back and took me to the ER. This was October 20th, 2009. They got me back real quick for an ER, and had me having a CT within like 30 minutes, however ER Dr. d=said he just wanted to do that since no one else had, but he felt it was just Bilateral Migraines and we would be on our way soon. (Notice this is the third different migraine I have heard in the past couple weeks.) Well within maybe 30 minutes he comes in and says they see something in my left frontal lobe right in the front and did not look to be doing anything but lying right on top of the brain. Not entwined or anything. But that they are not sure what it is. It could be anything from an Infection to a mass. He also stated that there was quite a bit of swelling on my brain as well. He told us they will be coming to get me for an MRI and that they will know more then. About 30 minutes later they have me in MRI, and take me back to ER. No time later he comes in stating there is definitely something there that looks like a mass, and they would like to send me on over to there main facility downtown who has the Neuron Dept. I was admitted to the Main Facility, and they started Steroid immediately to reduce the swelling on the Brain. At first they were talking surgery by the end of the week, however after no headaches at all once Steroid started they released me the second day to continue the steroid to reduce as much swelling for the operation to go more successfully. The did the surgery October 29th, 2009, and when my wonderful surgeon come out to inform my Husband, and Family (I had 49 people in surgery waiting), he stated he felt after looking at it under the microscope it was maybe a Stage 1 or 1.5 tumor. It had a cyst on the front and back of it, and he removed all three due to cyst was made out of same tissue, but they were all just on top of the brain. He stated the final reports would take a few days but he felt confident he got it all, and that it was one that may never grow back and if it did it could take my lifetime to. The MRI the morning after surgery shows he got it all! I was in ICU 2 days and in a regular room 2 days and was released to go home. We went to my follow up on November 11th, 2009, and the final report states it is Stage III. The surgeon told us he is sending me to UAB in Birmingham, AL within the next two weeks for a second opinion as well as to get a treatment plan together. He states he is still hopeful they will be like it is only a Stage 2 or even the initial thought of Stage 1 or 1.5. I have not received my appointment date as now for when I leave for UAB but will get that by today or tomorrow. I do have an appointment today with the Radiologist that will be doing the treatments her in Mobile, AL where I live. So we are still in the dark on what is about to happen as of now. I feel it was a blessing I found this site because I have people going through exactly this. Wanted to join as my adventure begins with the Lord first and Doctor's second. Look forward to sharing!

This is what I posted for my family and friends! It is hard to repeat everything on the phone to everyone.

We received a call from UAB today before we left for my Radiologist appointment and they stated that they want me there Monday the 23rd at 11:00 AM. It is a one day appointment. They will review all of my medical records and slides to see if the treatment that the radiologist Dr. Russell, who I went to see today, and the chemotherapy Dr. Becker, that I will have to also see here in Mobile on Wednesday after I return from UAB, all agree on the best treatment possible. I go back to my radiologist Thursday for them to make a mask to mark where radiation goes. They want to do a combination of radiation that I will do 5 days a week for 6 weeks, and a Chemo Pill called Temodar I will take 7 days a week until the radiation is complete. I will see the Chemo Dr. maybe once a week to monitor blood levels throughout the therapy, but they feel this is the best way to aggressively treat and keep the Cancer from returning and spreading. The radiologist is confident that this is the BEST course of action. He is glad that it is Dr. Nabor’s in UAB that will be my second opinion as well as his consultant on treatment. Dr. Nabor’s actually did a procedure on my Radiologist, treatment for something neurological and the radiologist has not had problems since Dr. Nabor’s helped him! My Radiologist has worked with Dr. Nabor's for over 15 years. The radiation treatments they state takes 15 minutes, and 10 of that is just getting me on a flat bed. The actual treatment only lasts 5 minutes. It is not enclosed, the machine is just above my head. They will put a face mask on me that has everything marked so the radiation goes the same place each time, it also holds my head very still so that I can not move it at all to be sure the radiation is only in the same spot every time. The side effects basically are that I may lose hair at the different spots where the radiation enters the skull, maybe some nausea that they can give me meds for, and that there may not be any other side effects. The chemo pill should be very tolerable as well. The Dr is also letting me come off the steroid at a more rapid pace. Yea maybe I will get some sleep. The Radiologist also mentioned he knows Davis Pilot when he noticed where I work :) I miss you guys, and I am very positive after meeting with the Radiologist. When I come back from UAB probably Tuesday since it is a one day appointment there, I will have to meet with the Chemo Dr. Wednesday the day before Thanksgiving, and my Radiologist said they will give me the Thanksgiving holiday off, and then start treatment. So since Radiation is Monday thru Friday I feel the treatment will most likely start Monday after Thanksgiving which will be November 30th. So 6 weeks from then I should be on the road back to me :) He did say that about week 2 or 3 of the combination therapy I will most likely be real fatigued and tired, but I can live with 3 or 4 weeks of feeling yucky since I had headaches for a few months and was sick everytime I turned around. It will honestly be nothing different than what I was already feeling. I will let you guys know the exact date treatment will start when we know, and we can count down the 6 weeks!

Welcome to this board, I look forward to getting to know you and hearing about your progress. My sister (now age 26) was diagnosed in March 2009 with AA stage 3. She had one tumor removed but the other 2 tumors are not operable. She then had 6 weeks of radiation and she is now on Temador. The radiation made her very tired but she says Temador isn't bad. She is very upbeat and determined to beat this.

Please do keep us posted on your progress. We are always here if you need to talk and we are all rooting for you!! :-)

That is encouraging about the radiation and chemo! I am so glad she is upbeat about this! I have been staying upbeat as well, and that is what we have to do.
how is she feeling now?

I have a Brother as well, and he is taking this hard, especially since our Mom had a Stage 4 Brain tumor when I was 2 and he was 6. They gave her 6 months to live and she lived 6 years! That was 25 years ago! Medicine has come along way since then!

Thank you for being my first supporter! I will keep all informed and please do the same.

Remember to Trust in the Lord!!!

You sound so good and upbeat, aditude is alot to do with feeling good. My son has gone through all that you are ready to do, summer of 2008 "he is a fashion guy and got dressed is everyday to inpress the nusres" & graduated High school in 2 years while doing the treatment. So find your nitch and do what you can, rest when you can let other people help, cuz they do want to. I think you will do fine this group has given us a lot of hope so keep up the wonderful uplifting outlook. There is a web site for cancer patients for housr cleaning services .....I can't find the email right now but I will get back to you with it's a service that they find someone in your area and the donate the time and services.Hope you have a wonderful Thanksgiving We all have so much to thankful for this year! God bless

Thank you for your response! I have been very positive throughout this, and I know that I can beat this if I stay positive and I believe that The Lord has a plan for me to deliver my testimony. I actually am having my testimony I gave in church Sunday put on You Tube and facebook by a friend right now. As soon as I get the link for You Tube I will put it on here to share with all. I look forward to this discussion group and learning all I can about this disease. I also look forward to just having support and helping support everyone on here!

Your son reminds me of me. I am getting dressed up to go places! Tomorrow I go to get fitted for my mask for preparation for the Radiation to begin, and my Aunt bought me a shirt that has the Pink Breast Cancer Ribbon and says "Fight Like A Girl!" on it. I am wearing that to my appointment tomorrow :)

Does anyone know how I can change my name from Chicken. My email address is chicken2799 and has been for years so that is the name it is giving me, but I do not want anything about being Chicken to be my name in a time as of this! My name is Michelle :)

OK then, I'll call you Michelle. :-) I don't know how to change your name, maybe if you email the administrators they can help.

Speaking as a family member I can tell you this has been very hard. My sister is quite a bit younger than me and this was not supposed to happen to the baby of the family. But there is a way you can help your brother, and it's the same way my sister helped us. Just let him know how positive you feel about the situation and that you are determined to beat this. Remind him of how far medicine has come in 25 years, and how new breakthroughs are happening all the time. I was so depressed to learn of my sister's cancer and ironically, she was the one who comforted me and made me feel better. I still hate this and I wish it would go away, but she has given me a whole new outlook on the situation.

My sister is feeling very well now. She sleeps more than most people. But when she's awake she's the same as she ever was, and except for the bald spot you wouldn't know anything is wrong with her. And besides, she's so cute even the bald spot flatters her. I will be seeing her next week at Thanksgiving, I can't wait.

Hi,
My 17 year old daughter has AA3. She was diagnosed at 16, reminds me a lot of your experience. She went to the eye doctor, medical doctor twice, then we took her to ER. That is where they found the tumor. She has had 6 weeks of radiation and 42 days of Temador. Now she is on her 5th cycle of Temador and CCNU. She tolerates it well with the help of Zofran. You are not alone in this horrible tumor. She did have surgery in Feb. 2009 and after the surgery, the doctor told us the same thing he told you, probaly grade 1, will never come back. Two days later we got the news it was grade 3. God bless you.
pat

This is the best site that has ever happened to me! I Have been so positive, and that is all any of my friends and family can talk about. It has raised their spirits as well, and to know how great your daughter is doing has made this positive attitude even stronger! Thank you for your shared experience! You will all be in my prayers!

Love

Michelle

Hi Michelle,
Good to know you are doing well. Expect there to be bumps along the way, but everything will work out at the end. My daughter is doing well. Still has headaches, but nothing like she used to have. She is living a normal life, going back to school in January. She is a real sweetheart and doesn't like us to worry about her. Her MRI's are clear since her surgery in February. She still tolerates the oral chemo with the help of Zofran. I tell her to Live her Life like she will live until she is an old old lady.....she likes that. She won't let her cancer or fear of it returning stop her from living. God bless.
Pat

I had my bump the day before Thanksgiving. I started having seizures that Wednesday night, and it took them a week to get them under control. I was in the hospital for a week and a day, but am now back at home. It was a small bump along the way, and they had already warned us that seizures were likely. I am starting week 4 of radiation Monday, and have lost all the hair on the left side of my head. My husband shaved my head last night, and it feels weird, but at least it will all grow back the same length. I am still very positive because this is the side effects we must face to reach remission. I still trust the Lord will help me through, and we are halfway through. Like you told your daughter I am gonna live life as though I will live to be an old lady...

Thanks for your reply,

Michelle

Michelle, what you are dealing with is similiar to my daugther! She is 15yrs old diagnosised with AA3 in Nov. 09, we are done with radiation and now chemo continues for over one yr. We thought that she was doing so well in Feb. when suddenly seizure, now back on Keppra no more seizures have occurred. Everyday you want to be thankful for that day, but I go though the why her almost daily. I think for us after surgery that got most all of the tumor we were thankful and felt the worst was over then the diagnosis, and not the never knowing if it will return. I know she is scared but does not talk of it much, she has an MRI next week and we go though this holding our breath and all the fear. I know likely you have the same feeling, you want to know but don't want to know. She is not receiving the Temador chemo, they felt that as a teenager it was best to do the PCV chemo, and if Temador was needed later for recurrent tumor it was an option. I don't want to think of her having to go through all of this again. I hope for her to experience all the wonderful things in life that most people get to, I want her to be able to not have to think of this everyday. I hope for you to not have to think of this awful cancer everyday. I try to think of things to be thankful for daily, today I have my children and my husband, Megan is not sick from chemo, and life goes on today. I will always long for the days we had before the brain tumor.
Thank you for letting me share, I hope today you can be thankful for not feeling ill!
Stacy

HI:
My 17 year old has anaplastic astrocytoma, grade 3. They are using the Temodar and it horrible. It makes her so sick she can't do anything for 7 days and loses weight every time. What is the other chemo drug you mentioned for teenagers? What hospital do you go to?

I hope and pray your daughter is busy doing the things she loves. Many blessings to your family.

Hi Patricia:

My daughter was also 17 when she was diagnosed. She presented with severe anxiety and her tumor was AA3 on the left frontal lobe. They surgically removed 85-90% but could not get it all. She had radiation and is currently finishing the chemo.
How is your daughgter doing today? I hope you are all well. God Bless you.

Edna

You do not know how much you sound like my brother! I too have been the one telling him I will be ok! All he can say is, "I want it to be me because I cannot be here without you!" I too am the Baby, it is only me and him, and we are so close. He is 4 years older than me. He runs a very large Ranch here in Mobile, Al, and gets so upset that he cannot be with me every second of the day. He is 15 minutes from me and I try to explain that, but I hear it each time I speak with him! I am so positive about this, and tell him all the time, but he is taking it very hard even with the positive outlook. I am glad that you have shared with me being in his exact position.
We are leaving Sunday morning to head to UAB in Birmingham, AL, and he is not able to come due to they are working a lot of cattle right now. My appointment is for second opinion and recommendations for treatment that will most likely start November 30th. I tried to tell him that my appointment is a one day appointment on Monday, and I will be right back in Mobile, AL Tuesday 15 minutes away again.
I will show him this post and show him he is not alone!

Thank you PBJ!

Soooo glad to hear your sister isnt havent much trouble on Temador.I am going on my 4 th round soon and I have had no problems! Slight bellyaches.I work while taking it.I take it right before bed.I also stay way upbeat and pray every moment.

Be Strong. Live Strong.Pray Strong.
Heather D.

Hi chicken, and everyone else.

I just found this group and wish I had found it a year ago. I've been snooping down through the stories and was floored when I read yours. It could have been my story.
I found out I had a tumor Oct 3rd 2008, right frontal lobe about half an inch around.
Surgery early November which got about half.(the other half had veins through it so Dr didn't want to risk it) I was home less than 24 hours later. Got the word a week later that it was a Grade 3 Anaplastic Astrocytoma. Same story.... 30 radiation sessions mon-fri concurrent with Temodol 7 days/wk. I had a month off then started more Temodar 5 days of 28. A different spin with mine was inclusion of Accutane for days 1-21. I haven't seen anybody else here taking that drug, but my RO says it "enhances" the chemo. What I've noticed is it dries my skin out something awful. Anyhow, I was told I'd do 12 to 24 cycles of the chemo. I've just finished the chemo part of cycle 11. MRIs show no regrowth and they say I will stop chemo after 12 months. I'll be done by end Feb. I got my driver's liscence back just before Christmas after about 13 months off the road.
I tolerated the Temodol quite well, throughout the whole thing I never vomited; I felt pretty crappy at times, but not debilitated. I was told that Temodol would not make me lose my hair, which it didn't, but like you say, I was told the radiation would leave hairless areas, which it did. For a while I wore my head shaved,(my scar is a straight line from front to back about 3 inches above my right eye and will be covered if my hair ever grows back thick) I stopped shaving it and now have very soft and thin "baby hair" where I lost it. I went back to work in October and am very glad to be productive again. I came out of surgery with all my functions, no deficits noticed, other than emotions seem to be boosted. When I'm mad I'm madder, when I'm sad I'm sadder...etc.
It's been a long road, and an even longer road ahead. The hardest days so far were the first day when I found out I had a tumor, and the day my wife and I told our 2 boys(then 8 and 5)
Since then it's been one day at a time.

i just came across this lovely webite today and i am very moved with the content. the first blog i read was from janet who is worried about her nephew in law. she first posted her comment on oct08 and i was eager to tell her about my friend scott. he was diagnosed with a grade four astrocytma nearly ten years ago and had remained cancer free until around four months ago. he is currently undergoing chemotherapy and he again is responding very well! i am going to encourage scott to have a look at this website as i think it would be very good for him to keep his spirits up and im sure he would have a lot to offer other cancer sufferers. janet i hope your nephew is doing well.

god bless you all

For those who haven't seen my thread entitled "Fast Recovery from AA3, Miracle or Mistake," please take a look at my latest post. My then 25-year-old kid sister was diagnosed with AA3 in March of 2009 and in a year's time she is now cancer free!! Miracles do happen, please do not lose faith. We can win this war against cancer.

Hugs and blessings to all.

This November will be the 5 year anniversary of the removal of my AA tumor, grade3. The 30 treatments of computerized laser radiation treatments to the cancer that couldn't be surgically removed went by quickly. My hair, from those radiation treatments, started falling out after 3 weeks of it, but only where the laser beams passed so I was left with a mohawk hairstyle. The temodar pills during radiation and for a year afterwards seemed very tolerable to me. 5 years ago I had just turned 38. After having a seizure, something I had never had before, turned up the tumor with an MRI. Recovery from that seemed easy and then all the other stuff mentioned above have me cancer free for almost 5 years. My next MRI is June 14th. I am assuming it will still be clear. Here is to staying well so I can see my adorable grandaughter, who will be 1 in July, grow up to be a beautiful young woman. Depakote is the anti-seizure med that I am on. Does this make one lose some memory or is it just being in one's forties?

I'll be praying for you and that you will still be cancer free. I just got diagnosed with your same type of tumor this past week, and all I ask GOD is to please let me see my little children grow up ( they are 2 and 4 yrs old ) even if I don't get cured, I ask GOD that with treatments and surgery I can still be around at least until my kiddos are adults.

I pray the same thing every night Diablita, i know how you feel about ure babies, that seems to make it so much harder. Just try and keep ure faith, i am trying and i will keep u n my prayers

I pray for exactly the same I'm 33 and have five fantastic kids aged between 14 and 4 all I want is to see them grow up .. This is a nightmare I hope and pray for good MRI results and the same for you ... This disease is cruel ... X

My husband is also a AA3 survivor. Good job! Memory issues are often a problem for anyone who has had trauma to the brain, and the meds can make it worse. Depending on where you are, you could ask your neurologist to have memory testing. That way they can map out the particular facets of your memory that you are having problems with. Then both use that as a benchmark to judge deteriorization, as well as suggest therapies that may help with builing it back up. My husband has also been struggeling with this, more since the stroke he has from the radio therapy, than the tumours or meds. I feel as if he is making some progress though, and has returned to study while he is working. This has helped. Good luck!

HI:

Praise be to God! I hope your sister is doing well. thank you, Thank you for the hope you are giving. God Bless you.

Stay well, Danny! So glad to hear this. Hubby just got off Temodar after 10 mos at 450 mg. He'll have MRIs every two months for this first year. We pray the same results of clean MRIs for the next 50 years! :)

my husband is begining his 11th year from aa 3. temordar did not work for him. i guess i am saying that if temodar no longer works that there are alternatives. my husband has mri's every 4 mos.

So glad to hear he's 11 years out and doing well. Life feels "nearly" normal now in some respects by just having a break from the chemo.

For all those newly diagnosed, keep hope and faith alive through the early part of this. Looking back to 15 months ago, going through all the initial treatments: biopsy, radiation, chemo, monthly chemo, appointment after appointment, it's easy to get discouraged and weary. Treat it like a job - what you must do to survive. Seek out a second opinion if necessary and find the best brain tumor center you can to help you through. We are so grateful to the doctors and staff at Duke, and we'll continue MRIs every two months this year. A 7-hour drive is nothing compared to the quality of life my husband now has again.

I am so proud of the strength and courage my husband has had as he's faced his second round of brain cancer in his 44 years. I know each of you will find the same strength yourselves or for your loved ones to do all you can to get through each day. Truly take this one day at a time. Don't invite worry. Be involved in every aspect of your treatment and options. Ask a zillion questions. Stay strong in the fight! God bless!

HI KM Ponder-

What type of brain cancer did your husband have? I am sorry for your loss. May God comfort you during this difficult time.

Edna

Hi Edna,

I had been in contact with Kim last year, but haven't heard back from her. can you email me please?

jirue001@gmail.com

Where were you treated - at what hospital?

Where were you treated - at what hospital?

HopeKathy,

Were you asking me where my hubby was treated? If so, he was treated at Duke this time.

Since my last post, my husband has suspected radiation necrosis on the optic chiasm. His 10/21 MRI showed the new enhancement, but the 10/22 PET was completely cold. He's lost a lot of vision in both peripheries. He's now on biweekly Avastin treatments. He's tolerating those just fine, thankfully. We go to Duke every two months for MRIs at this stage of the game.

The tried a large dose of steroids for five days the week of Thanksgiving, and he had the darn steroid psychosis again! I am NOT going to allow him to have more high doses of steroids. He has proven twice now (first time after brain biopsy in September of 2009) that he cannot handle them. He has missed what will be 12 days of work because of this, and he didn't miss but three days all year, even while on Temodar through October! I'm so frustrated with his local oncologist for not listening to me when I saw it coming on, that I requested a new oncologist. If ever your loved ones or self need high doses of steroids, please, please educate yourselves about the possibility of psychosis. It can be a very frightening reaction, and the doctors do NOT prepare you for the possibility. (Off soapbox.)

Hubby's so different from most, because this is brain cancer round two, different kind. We know his radiation in 1987 caused his AAs now, and we just pray he'll continue a good qaulity of life, even with the vision issues. He's one remarkable man!

Hi:

Can I ask you a few questions? Did they get all of your tumor? You had radiation twice a day?

Have all of your MRI's been clean? My daughter had surgery, but they could not get all of her her tumor located in the left frontal lobe. She then did six weeks of radiation, one time a day followed by a year of maintenance chemotherapy which includes temodar.

Her initial MRI was not too clear on whether their was still residual tumor or whether the site was healing? does this sound familiar on this road to recovery?

Thanks.

Be473,

How old is your husband? So he had radiation twice, like my husband? It is interesting that both our husbands have had vision issues after two rounds of radiation.

I know it is a VERY busy time of the year, but I would love to e-mail with you when we both have time.

I love that your husband is so positive, too. You just have to be.

Happy Holidays!

Hi:

What do you mean by complimentary treatments? Were they in addition to radiation and chemo?

My doctor discovered a 'spot' in my right temporal lobe/insula in Aug 2005 (I was 34 y/o male). They watched and waited until 2007 when I started having simple focal seizures. Had a craniotomy Apr 2007 at M.D. Anderson. Diagnosed as AA-III. They removed somewhere between 70-95%...left the tumor portion in my insula. The tumor pre-surgery was about 6 cm. Maybe about 1 cm remained. I had IMRT June - Jul 2007 and we decided not to forgo chemo. I've been on 3 month scans ever since. This past August (2010) they moved me to every 4 months. So I've passed 5 years since a 4 cm 'spot' was discovered and I'll be 4 years post treatment next July (2011). Other than the emotional roller coaster ride...I've been fully functional and able to work full time (USAF Active Duty - they still won't let me deploy).
God is good!
John

my daughter is 13 and has AA3. She has had 4 brain surgeries to remove tumor and new tumor growth. Every surgery she has had we were told that she would have left sided weakness. Almost like having a stroke. Every surgery she has come out fine. No major left side weakness or anything. She is back at school and doing good. You are right. GOD IS GOOD.
We have alot of faith that God is with us and taking care of her.

John, I have been able to do most of what I want to do; I did retire early from my job because it was just too stressful. And, I got a puppy who has enhanced the quality of my life and kept me busy (and from sleeping 24 hours a day). His name is Angel Ray, a miniature long haired dachshund, and he makes me laugh, too. My tumor was very small, and the recurrence was very small (pea size), and my challenge now is to gain weight. The Avastin gives me a little trouble with my stomach, but all in all, I do not have near the problems that some people do.

May God continue to bless you and your family.

Rita

I'm a 45 year old mom diagnosed February 8th with AA Grade 3 and undergoing similar treatment now. Feels great to hear people are being cured. I so want to get back to work and life as normal and feel good again. God has been amazing and my side effects are so few and less than most, but still really need to get back to work and some normalcy. I keep thinking I should be using this time off more productively, but just have no energy - is this normal. I'v had 20 radiation treatments now and 13 to go. Chemo at night by pill. I am also walking miracle and amazing doctors that I don't have more permanent damage. Isn't God good? Any suggestions on maintaining or gaining energy?

My hubby responded extremely well to his radiation (33 treatments) and Temodar for his three inoperable AAs diagnosed in August 2009. He remains doing well from those, but he unfortunately developed a GBM on the optic chiasm we are now treating/fighting.

Has your doctor suggested Ritalin for energy? When hubby returned to teaching post radiation in January 2010, the Ritalin really gave him the energy he needed to get through the day. You've got to rest when you can, but this really did make a noticeable improvement.

Chemo fatigue is something I didn't realize was so serious until we went down this path. It's real, and sometimes rest is the only way to combat it.

I wish you complete healing. Even as my husband endures his third malignant type tumor at age 45, God is most definitely still good!

My radiation oncologist actually talked about putting me on ritalin. We were trying just walking more and being more active naturally, but that is not giving more energy. I guess I was trying to avoid another medication, but maybe I should try it. I'm so tired all the time. I would love to be awake more and be more active.

Hi Kim,

This is Jeannie I. It has been several months now since we last spoke over the phone. How is your husband doing?

Richard is doing well. Last MRI still showed no signs of the tumor decreasing but thank God it hasn't grown either.
After our next MRI on Monday we are looked into going to MD Anderson. We already have the appointment scheduled.

If I don't hear from you I will try sending you an email.

Hope all is well.

God bless.

Recently my mom was diagnosed with AA3. My senior year in high school is as good as it gets.. As long as my mom makes it through. I spent months in the hospital.. missing school.. 100$ in gas. My family is strong. That wait of a 7 hour surgery... killed me... i was worried the whole time. I dont know that much about it. But i am doing a project for my anatomy class on this very disease... I waled relay. for the very first time. My life has change dramatically. I would really like to ask all of you questions on how it happened? My moms was out of NO where.
You can contact me at nuez.dallas@hotmail.com
Relay for life really opened my eyes... i know i am not alone on this... I pray for you all.
I go home early from school... to help with my dad. He stays home 24/7. Please keep me updated everyone. Its a scary thing.. im young but ive learned so much responsibility.

Keep Faith

Dallas:)

Hi Dallas,

I was diagnosed on Feb. 8th. Don't lose hope. According to my oncologist, this disease is treatable and can be curable. I just finished 34 radiation treatments and my four tumors are decreasing even before they expected them too. I have three kids, 14, 22, and 26. Our faith is what gets us through all of this. Lean on that. Actively read a devotional or your Bible, or a bible study or do youth group. You'll need that support - as well as your mom and dad. For your mom, I would highly recommend Barbara Johnson's book, Stick a Geranium in my Cranium - laughter and humor are key. But also recognize, that there will just be bad days and good days. Now that my I'm on the back side of the treatments, I feel much better. I just started weight training at a gym at my oncologist recommendation and it is making me feel much better. And, I'm getting some strength back in my legs - the steroids just about took it all away. As for how or why she got it, you'll never know is what they are telling me. I only had a few mild symptoms for two weeks before I was violently ill and being admitted to the hospital.

Hang in there and stay strong and positive,

Shelly

Thank you for that. All I read on the internet is so negative, the statistics etc. it makes me want to quit reading the internet or doing searches. My father was diagnosed with grade III astrocytoma had total resection (I realize some cells are always left) he is undergoing 6 weeks of chemo/radiation (temodar). My dad is 69, he is doing well other than being a bit unsteady on his feet since starting the chemo/radiation. I need hope, I have faith in God. I am scared though. I love him more than my own life.

I urge you to please stay off the internet except this site. Much of what you will find is out of date and/or worst case scenarios. When my sister was diagnosed with AA3 I nearly drove myself crazy reading all sorts of grim stuff about AA3. Then I found this site and I finally had hope. My sister went through 6 weeks of radiation which was tough. Then she had about 8 months of chemo (also temador) which wasn't as bad, and in less than a year's time she was in remission!! Of course we can't possibly know how long that remission will last but it's been over a year now since her MRI's came back clear and I am thankful for every day. Don't lose hope.

Dear Hope,

All of my sister's docs (she has aa 3) tell her over and over again: to have more energy, exercise. Exercise is an independent prognostic survival factor (pubmed).
Take care,

Julia

I am retired USAR..I did have 8 years active duty but nothing like your experience.
I take my wife to MD Anderson..always want her MRI's to go off at Mays Clinic...but lately, they've all been 3rd floor main building...
Man, I like that big waiting room over at Mays..
My wife has GBM4...
Be careful about that radiation...
If the report indicates "flairs" or "treatment effects" tell the doc to watch that close!
I never dreamed radiation treatments could do so much to a person..but it really sent my wife for a loop about a year after the treatments were over....
Best of luck to you!
I think the real secret to health are those mashed potatoes with the peals grounded up in them in the MD Anderson chow hall.

Hi:

I have seen those very words in my daughters MRI report. What should we be watching for? Please? We are in the middle of this journey and trying to figure out the best plan for our 17 year old girl.

Thanks.

Greetings to a fellow Texan!! Or should I say howdy? :-)

Alex, I would like to make an appeal to you in the kindest possible way. My sister was also diagnosed with AA3 in 2009 at the age of 25 and like you, she had surgery at MD Anderson. She was also a smoker. The fact that you have cancer is not a reason to continue smoking, in fact it is all the more reason you should quit. I know it's hard, I've seen my sister struggle with this monkey on her back. The stress of having cancer makes it even harder. But you already know you are prone to cancer so it really is imperative you should stop so you can enjoy life with your new love.

I apologize if you feel I am overstepping my boundaries but just a few days ago I lost a friend to cigarettes. AA3 is not preventable but most lung cancer cases are.

Wishing you and everyone on this board the very best, you are all in my heart and my prayers.

Thanks. My wife has just been dxed with same. It was stated to me as a stage 3 glioma (same). Since I have training it couldn't be hidden from me and the neurosurgeon comment on that fact since I asked many pointed professional questions. The worst part is not knowing how long she will be around.

My wifes is mainly in the Left parietal lobe with a small intrusion into the temporal lobe and R hemisphere. Operation is scheduled for Friday for a resection. Estimated removal is 70% due to the depth. All higher cognitive function is absent along with limited movement on the RHS.

Hi there, my 13 yr old daughter has been diagnosed with AA3 also. She was 12 when she was diagnosed. We found her tumor only after I demanded a ct scan from her pcp. She had surgery 4 days after. 4 days after that she had her 2nd surgery to remove tumor that they couldnt get to at the first surgery. Once her incision was healed she went through 35 radiation treatments and was taking Temodar. That was july 2010. In Sept 2010 she had her 1st MRI and there was signs of new growth. She had her 3rd surgery. At that point, her doctors told us that there was nothing more that they could do and to enjoy my time with her. I told them to go to -ell. I took all her records and left. She now goes to the jimmy fund clinic/dana farber in boston mass, she is on a 5 drug regimen costisting of 2 oral chemos that she takes everyday and IV avastin every other week. She has been cancer free for 7 months. I do know of a clinical trial that someone we know is on, it is an injection of an HPV virus that is injected into the tumor. So far his tumor has shrunk by 50%. We also are christians and believe that God is walking with us through this journey. I want you to know that you are not alone and if you EVER need to talk or vent, I am here for you. God bless you and your daughter

Hello momsworld.

Thank you for sharing that with us. I am so happy to hear your daughter is doing well. My boyfriend and I are Christians too and we know that prayer goes a long way.
In September of 2010 my boyfriend Richard was diagnosed with AA3. Because of where it is (occipital lobe) the tumor is inoperable or at least a high risk. What surgery isn't however?

He did Gamma Knife sugery, full cycle of radiation (the most he can do in a lifetime), is taking temodar and avastin. The tumor is stable it hasn't grown, but it hasn't shrunken either. His doctor says he may never shrink at all. He feels great but we are wondering if there is something else we should be doing.

I have done research on MD Anderson and Duke. Do you or does anyone else know where we should go to next?

Please help.

Thank you for sharing your journey. I need to hear your encouraging words. Also, knowing where your daughter is being treated is helpful. We will do her second MRI in July and I am trying to remain positive but I am afraid.
Do you mind if I ask your daughter's doctors name? Or for more information on the trial?

I hope there is not new growth in July, but if there is I am sure we will do the same as you and take her records and go to a new facility, maybe even the same one and get our girl healed!

Many blessings to you and your daughter - seven months cancer free! Praise be to god! I wish you the best in this life. I hope we can stay in touch and learn from each other. God Bless you and your daughter.

Hi,
We see a Dr. Nathan Robison and Dr Flemming (a fellow). Everyone at the Jimmy fund is so nice. We could not ask for a better place to be. I have also considered MD Anderson, but there is someone I know who's son has AA3 and they went to MD for a 2nd opinion and they said that he is getting the same treatment at JFC as he would there. Dana Farber/JFC are up to date on treatments. Boston Childrens hosp/Dana Farber has been voted #1 in the country for 2011. Good luck, I will pray for you all and I would love to keep in touch

I'm Marc and new to the CSN as of today, I wondered if anyone knows of support groups in Chicago area? I'm going through a lot of confusion and borderline depression and it seems like most people who are well don't get it?

If you ever need to chat this forum is a great sounding board as well as a wonderful resource for info. We are always here for you.

I did a quick google for support in Chicago and I found this. I hope it helps.

http://www.gildasclubchicago.org/home.jsp/

http://www.cancer.northwestern.edu/public/connect/support_groups/index.cfm

http://www.reshealth.org/yourhealth/support_groups_details.cfm?subject=Cancer

there is a great group in the NW SUBURBS CALLED "THE WELLNESS PLACE" AVTIVITIES AND ALL KIND OF SUPPORT. if you need more info let me know

Delnor hospital in Geneva has a 'Brain Tumor Resource and Support Group'
www.delnor.com/supportgroups

I agree, most people say, don't worry-you will be ok. Well, that's probably not true, but it is good advice. Your life has taken a turn beyond your control, but you can make the best of it.

You can read my story at:
edslas.blogspot.com

Hi Momsworld:

We had our July MRI and it was good! Thank God and all of the prayers. There was no growth and no change, so we are sticking to our plan as of now. The Temodar is dreadful though. We are finishing up a five day course and it kicks my daughters butt. thanks for the informaiton on the docs and hospital, I am going to keep that tucked away. We are going to look for some support groups this fall because I think my daughter needs to meet some other teenagers battling cancer. It wouldn't hurt me either. :) Many blessings to you and your daugher.

Hi Momsworld:
Could we email each other? My email is edna@camai.com. I know you replied before and told me your daughters medicine, but I can't find that post. We finally had too good MRI's but now they want to take our daughter off of the Temodar and we are concerned and confused. How long was your daughter on Temodar? What does she take now? Thanks for sharing and offering supporting. God Bless you and your daughter.

dear Scai, when I started reading your story it sounded like u were talking about me except for MS . They told me I have AA In June 2011 also. Had open brain biopsy on Nov 9, 2011. they started me on radiation and temodar dec 21, 2011 to feb 3 , then i restarted temodar mar 3. for 5 days every 28 day cycle. Since i have had 2 more MRI s and my tumor has grown and a lot of swelling going on. They just started me on Chemo IV and ill continue the temodar as usual. they r treating it aggressively. when this first started, the day i passed out with a seizure , i had just got off school bus (i was the driver) and i drove home and then it happened. i too was lucky. mine is right frontal temporal lobe, deep down in crease. they say it is inoperable. in the beginning they did check me for incephlitus. but anyway just wanted to see how how things r now. our stories sound so much a like. hope u r doing ok

This is wonderful news, as I spend more time on here and researching this, I hear more and more positive stories. God is working his miracles

Amen to God's great works! This is a very very hard journey. But, I believe. We must all believe and pray especially during hard times.

Ya know, the Lord uses the horrible things in life to purify and bring us closer to Him. I'm glad I now have a testimony to how amazingly wonderful He is. Your son will be in my prayers!