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Grade 3, an anaplastic astrocytoma

JanetLMcCoy
Posts: 6
Joined: May 2008

My nephew-in-law was diagnosed with an anaplastic astrocytoma, Grade 3, last December. He had surgery at MD Anderson Cancer Center, recovery, rehab (very little was required) and 6 weeks of radiation

He's recovered great, is back at work and driving.

I'm hoping to find someone who has beaten the doctor's timeline diagnosis of 3-5 years. My nephew-in-law is 30 years old and has a wife (my niece) and three-year-old son.

Their very strong Christian faith, great doctors and wonderful family and church family have gotten them through the last 11 months.

Please respond if you are willing to talk about your experiences.

Thank you.

honeycomb1968's picture
honeycomb1968
Posts: 11
Joined: Mar 2003

would love to chat with you

kellbell
Posts: 16
Joined: Jul 2009

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.

spMC6032
Posts: 3
Joined: Apr 2010

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

spMC6032
Posts: 3
Joined: Apr 2010

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

spMC6032
Posts: 3
Joined: Apr 2010

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

rokaren5
Posts: 14
Joined: Aug 2010

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

kempenl
Posts: 13
Joined: Jan 2005

How come he didn't have chemo? I thought 6 months or more of Temodar was 'standard' treatment? thank you.

kellbell
Posts: 16
Joined: Jul 2009

My husband was diagnosed almost 11 years ago with an anaplastic astrcytoma stage 4 on his left frontal lobe. they did surgery and and couldnt remove it because of where it was at. He underwent 6 weeks of radiation. the doctors gave him 1 year to live. He was tumor free up until may of this year. He had surgery on June 10th and they removed 98% of the tumor.This time when tumor came back it was a grade 3. He is undergoing chemo right now and has some right sided weakness. But other than that he is recovering well. THE docs say he has a long life ahead of him.

Keep God in your heart and mind and you will get through anything. He is the answer to all. Put it in his hands and he will carry them through it. Keep on the bright side.. YOu can't look at it as the end of your life..Do not ever give up hope. We have you in our thoughts and prayers.

OCMenno's picture
OCMenno
Posts: 26
Joined: Mar 2009

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!

PBJ Austin
Posts: 346
Joined: Mar 2009

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.

OCMenno's picture
OCMenno
Posts: 26
Joined: Mar 2009

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!

OCMenno's picture
OCMenno
Posts: 26
Joined: Mar 2009

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.

PBJ Austin
Posts: 346
Joined: Mar 2009

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.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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

Fusionera
Posts: 10
Joined: Oct 2009

Hi Janet,

I just joined this network and I saw your post. I am a 14-year survivor of a grade 3 oligoastrocytoma, so yes it CAN be done.

The doctor told my parents flat out on September 8, 1995 when I was diagnosed that "we will do everything we can to make her comfortable." They weren't too optimistic after they'd found a softball-sized tumor in my right temporal lobe. At that point I was given about 3 weeks. I had a nearly seven-hour surgery 4 days later on Sept. 12th. I was 26 years old, not too much younger than your nephew-in-law.

I had radiation and started what was then a standard chemo cocktail, which did not work. I had a second surgery 7 months after the first, in April 1996, and they got everything that time. I was then enrolled on the Temozolomide clinical trial (I was one of the original guinea pigs on that drug!) and successfully completed it in May 1997.

Unfortunately, in 2005, 8 years after chemotherapy and without any symptoms, the tumor returned. I found out the day that escrow closed on my house...lucky me! No surgery this time, just more chemo and now I am fine, in remission, and still tumor-free. My neuro-oncologist said that we will treat this more like a chronic condition than a life-threatening illness like when I was diagnosed in 1995.

So- YES...it can be done. I'm still here over 14 years later...oh...AND I got my master's degree after having two brain surgeries. :-)

nrmbenz
Posts: 2
Joined: Oct 2009

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?

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

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.

SP24
Posts: 3
Joined: Apr 2011

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.

cushla69's picture
cushla69
Posts: 45
Joined: Dec 2010

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

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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.

sue Siwek
Posts: 281
Joined: Jun 2009

my husband had aa grade 3 diagnosed in 2000, so yes it is possible to beat the odds. he is young and it sounds like he has bounced back well. my husband had some difficulties, numbness, speech problems but therapy helped. he would still be going strong had he not been diagnosed with and unrelated malady called parkinson's disease. he is disabled but his mind is strong.

PBJ Austin
Posts: 346
Joined: Mar 2009

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.

rdan597
Posts: 1
Joined: Jan 2010

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.

kitkatkaz
Posts: 4
Joined: Nov 2009

Hi there, I am 5yrs out, Cancer free and drug free. I know many authroities do not give much hope past 2yrs.

The tumor I had was in the right frontal lobe. Had 28 radiation treatments, and 6 months of Tremdor chemo pills. Steriods, and dilantin, but have not taken any meds since I finished the Chemo pills.

I am sure there are more people out there, cancer free, from this as I am. I was back to work full time, within two months from operation, had to be out of work for the week of chemo pills, each month following after returning to work.

Hope this is helpful.... I would like to hear from someone who is futher out then me.
God Bless KitKat

dsteras
Posts: 8
Joined: Nov 2009

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

heather007_xoxo
Posts: 2
Joined: Dec 2009

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.

Gerard6
Posts: 6
Joined: Oct 2009

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.

RDJ1
Posts: 1
Joined: Mar 2011

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!!!!!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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

oneangel
Posts: 3
Joined: Nov 2009

There is no timeline. Don't get me wrong.....it's not easy. Refuse to be negative. Dont live according to anyone's timeline. Employ the best people you can and attack from all angles. Not just medically.....try nutrition, spiritual council, accupressure......anything. But don't allow statistics to run your life. You are in my prayers....

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

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!

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

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!

PBJ Austin
Posts: 346
Joined: Mar 2009

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!! :-)

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

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!!!

dsteras
Posts: 8
Joined: Nov 2009

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

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

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 :)

PBJ Austin
Posts: 346
Joined: Mar 2009

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.

patriciam
Posts: 39
Joined: May 2009

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

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

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

patriciam
Posts: 39
Joined: May 2009

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

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

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

megansmom
Posts: 8
Joined: Nov 2009

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

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

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

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

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!

heather007_xoxo
Posts: 2
Joined: Dec 2009

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.

SergeVP
Posts: 1
Joined: Jan 2010

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.

gunels2
Posts: 1
Joined: Jan 2010

Janet
how is your nephew-in-law doing???? my husband was dx in Dec 2007

betsyB610
Posts: 6
Joined: Jan 2010

I was diagnosed with grade 2-3 astrocytoma in 2002, a diagnosis later changed to ogilodendrocytoma. We were told in the beginning that I had 3-5 years - if I could handle the treatment plan. It was hard, very hard, but I made it through. Now it's been almost 8 years; although disabled from the impact of the cancer and the treatment. the "alien" as we call it, does not appear to have spread.

My husband was deployed just 2 weeks after we learned just what was wrong, before we even knew what treatment I would undergo. Our church family joined my own family and friends to care for me as I went through treatment, their prayers and practical help an amazing and humbling gift.

I am willing to talk - email or whatever - if there is any way you think it might be helpful.

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