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Astrocytoma Grade III-Survivor

Quilmes's picture
Quilmes
Posts: 7
Joined: Mar 2008

If any one needs help please let me know, I went through brain cancer and have lived. My calling is to help others survive also.

Jose

cbradley
Posts: 3
Joined: May 2010

Hi Jose,
I would like to know what kind of treatment you had and what kind of treatment you are still having? How long has it been since your diagnosis and how are you feeling today? I'm looking for anything to help save my daughters life. She is 19 and this is her second brain tumor. She had a medulloblastoma at 8 and now a grade 4 astrocytoma. Anything would help.
Carol

katelynn
Posts: 1
Joined: Jun 2010

Hi! I had a grade three astro ten years ago. Alive and fine as can be. I'm forty and people think I'm thirty. I am writing a book about my dating escapades since moving to NYC 18 months ago. This is the first post I've ever written. I don't define myself as a brain cancer survivor. I just hang out in life and have a good time. I did leave my accounting job and it is great to have ssdi and the brain cancer thing is how I get the money to live my dream, which i will do!!!! and I have a lot of allergies, etc. But I would say get the best treatment possible and ignore the situation after that. My family mostly ignored the fact that I was sick, which I resented, until a friend who has mental illness said that she noticed that the kids whose parents visited them in the psych wards never got better. I also had another astro survivor telling me I would definitely live and that turned out to be true. I also have a small brain aneurysm and hell if I understand that but it's supposed to be not that dangerous and fairly simple to fix if it ever grows. Just go by the assumption she'll survive and live a long, very normal, maybe even exciting life! That's what I'd tell anyone. Treatment is not fun. I had a pretty yucky experience but that made me a philosopher so I'm sure the same will be true for your daughter! Ha!

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Hi There,
I am so happy to be reading more and more pos+ stories. My 12 year old daughter was diagnosed with anaplastic astrocytoma grade 1 and grade 3. The doctors say that it is rare to have such a mix of low and high grade cells through out the tumor. She has had 2 brain surgeries to remove the tumor which was located in her cerebellum. The surgeon said that the tumor looked like a low grade as it did not look much different than the normal brain tissue. After sending the tumor to 3 other hosp for 2nd, 3rd and 4th opinions they diagnosed her with AA3. I'm hoping that she has a better chance because of the mixed cells. Not as many high grade cells to kill. Unfortunetly they gave my daughter the same prognosis as everyone else. 35-40% chance of living 5 years. I refuse to believe that. She is doing so well. She just finished her first round of chemo and has 6 radiation treatments left. Then she will be on the higher dose of chemo for a year, 5 days on, 23 days off. The longer we can keep her tumor free the better the chances of a cure or a new drug that will help. We believe in the power of God and miracles do happen. I pray that God will heal my daughter. I'm just so happy to have read your story as even though I have faith, I also have my bad days and need something +pos. Thank You :)

PBJ Austin
Posts: 347
Joined: Mar 2009

I know you've read my sister's story about her progress over the last year. We were told she has 3-7 years but she's not buying that and neither are we. My sister and I believe someday we will be old hags together. I will be a much older hag but at least we both will be old hags. LOL!! Keep the positive thoughts coming and remember that statistics mean nothing. She is an individual person and this experience is different for everyone. You and the rest of this board are in my heart and in my prayers.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Thanks PBJ Austin, I have been trying to keep up with your sisters story. I think that the doctors give the same statistics to everyone. My neighbor has stage 4 breast cancer which has moved into her bones now. She has had 3 rounds of chemo and several treatments of radiation. To her breast, to her spine. The doctors have told her that it was terminal. well guess what? it's been 7 years and she's still here. She is on a new clinical trial med but it seems to be working well for her. So you are right, Statistics mean nothing. I will pray for your sister and you as well. :)

tusya7823
Posts: 2
Joined: Jul 2010

So happy to have found this blog and see so many survivors. I have a diffuse astrocytoma grade 2 in my brain stem and growing to the left lobe so my right side is affected. Trying to cope with that, don't know what to expect... Haven't undergone any treatment yet. And surgery is impossible. Is there anybody with similar conditions?

tommybear
Posts: 112
Joined: Oct 2009

I have a grade II astrocytoma in my left temporal lobe...wasn't specified whether it was a diffuse or not, but from the description, I believe that is what it is. I also have issues on my right side, among some other things.

I did have a partial ressection in August of last year and stereotactic radiosurgery in December. The doctor was only able to remove about 25% of the tumor during surgery - so it was really just a biopsy, and was told that the tumor has extensions that are unable to be removed because it is reaching into healthy brain tissue. Was told that the stereotactic radiation could take a year or more to make any difference, and the tumor has not changed over the last six months. From what I have read and heard, chemo doesn't have much affect on stage II tumors. So, now I just have to wait and see if the radiation has done anything. My doctor seemed pleased that the tumor has not grown, but I am not real pleased that it hasn't shrunk either.

It is difficult coping with having a brain tumor. I don't always communicate with other survivors, but do read the discussions....This is a good place to be....

Take care,

Michele Stevens

Lenuzamdk
Posts: 1
Joined: Jun 2010

Hi, Jose, I need help, please. We live in Brazil and my mom has Astrocytoma III. She was diagnosed september last years. She had 3 surgeries and radioteraphy. Now she is going to start taking temodar. What do you think about it? How did you get the cure? Thanks, God Bless You!

PBJ Austin
Posts: 347
Joined: Mar 2009

Lenuzamdk, my sister took Temador and that combined with radition worked well for her for her AA3. The radiation was tough but it only lasted 6 weeks. She had very few side effects from temador except being tired. In less than a year my sister's cancer is no longer visible on MRI's. That doesn't mean it's gone forever, that is never a guarantee with cancer. But for now it is not visible so we are celebrating. I am no expert but I believe temador must be an excellent treatment.

Good luck, I wish the best for your mom.

ab293
Posts: 1
Joined: Jul 2010

My 44 year old mother was diagnosed with astrocytoma grade III in March and had surgery to remove 80 percent of it. She has undergone six weeks of radiation that was supposed to be coupled with temador. However, her platelet counts were dropping very low so she missed a week or two of chemo and has been receiving platelet transfusions, as well as a shot to boost cell production. Has anyone had these difficulties during chemo? Also, her radiation was targetting the front of her head so she has lost all her hair in these areas. Some say that it is possible the hair will not grow back at all. Has anyone lost hair and had it grow back after radiation? She is getting quite worried about not having hair anymore. Thank you.

patriciam
Posts: 39
Joined: May 2009

Hi ab293.
Yes, the hair grows back. My daughter lost patches on her head during treatment, but it grew back. She was on temador during treatment and was low in her blood counts too, and had to skip a few weeks before starting again, but she never needed transfusions.
Good luck to you and your mom.

green_carbon07
Posts: 4
Joined: Aug 2010

My 23 year old fiance had hair loss when he received targeted radiation along with Temodar, but the hair did grow back, and quite thickly! The only place where he still has a patch that is a little thin is the area where they had to place the drainage tube during surgery, in the back of his head. It took a little while, but it did come back in less than a year. I hope your mother does well!

jady
Posts: 1
Joined: Aug 2010

My best friend has astrocytoma grade 4 and i was just wondering what treatment anyones has had or wheather you no ov any treatments that might help her she has already had radiotherapy last june and she had it debloked in may and now on her second lot ov kimo now we will find out in 2 weeks weather the kimo has work as all the others havent i would be really gratfull if you no ov antthing 2 help us many thanks jady xx

rokaren5
Posts: 14
Joined: Aug 2010

Hi Jose,
I'll just give you a quick rundown of my situation, but it sure would be nice to have someone to ask questions to as I walk this road.

In 2007 I had some really mild "zone out" type activity. It only happened a couple of times and then went away. When I mentioned it to the doc he said, "If it comes back we have to look into it". Well in April of 2010 they came back. It only happened 3 times in 1 week and went away. Friends & family said, "Just go get it checked." and so I did. I aced the physical exam. I showed absolutely no physical indicators. My neurologist said, "I fully expect to see a normal brain." Well the MRI was abnormal.
I was diagnosed with level III glioma. I don't have a well defined "tumor" It's more like a "star field" ..... just random abnormal cells throughout the brain. It's mostly in the right temporal lobe, but the cells are really scattered throughout the brain.
I had surgery on 8/6. She took out some of the right temporal lobe and did a resectioning.
I just finished week 2 of radiation & chemo (temodar). We're fighting it like a level 4.

I am getting hit pretty hard with some side effects of the chemo. I deal with some excruciation back pain, but I have a massager that I lay on for a long time and it loosens me up. I'm wondering if I should ask the doc for some muscle relaxers because truly I'm just so tight when the pain comes on. It feels like a heart attack. Had that all checked out. Heart's good.
I'm getting regular massages, but it's obvious that this back pain comes with the chemo.
I also have a really itchy rash mostly on my arms but it's on my torso & legs too. I'm using a calendula cream non stop and it helps. It's just frustrating.

But here's the deal: I get it. This is my life. I have a brain tumor. And I'm going to live with it. Like my husband with his heart issues I will have to chase this tumor and keep it under control. But I'm gonna live.....a long long time. I just think of my tumor like a person who is fighting any condition.... diabetes, heart disease.

Am I crazy? I still show no physical effects of the tumor. Now it's all side effects and meds. My radiation oncologist & my surgeon both believe that I will return to work when the 6 week rotation is over. I work in live TV in NY, and I do have EVERY intention of returning to my crazy live show.
After the 6 week rotation I'll take a few weeks off to recover then I'm going do a double dose of chemo for 5 days. That we'll repeat every month for 6 months.
I would really love to hear some input from someone who is much farther along living with this disease.
Thank you so much,
Karen

Woodsymom's picture
Woodsymom
Posts: 13
Joined: Jul 2010

My 26 year old son has been diagnosed in June/2010. Graduated from college June/2010. Craniotomy/temporal lobe July/2010.Some aphasia but recovered. Short-term memory is poor but manageable. Married August 14, 2010. We are beginning radiation 9/7/2010. No chemo yet.

It sounds like you, in that he really had no symptoms except something that appeared like anxiety attacks, was treated with anxiety medication but when they increased in frequency an MRI was done and it was determined that what he was having was focal seizures due to a tumor. Medicine has them under control as well as the removal of 95% of the tumor with 'tentacles' still in his other parts of brain. That is where the focus of radiation will be.

He has returned to his part-time job but is wanting to get radiation over with so he can begin a search for a 'real job' and support his new wife. Told to increase calcium because radiation can cause thinning of the bones. Fatigue and some hair loss will be a side effect.
We are not sure what to expect except the provision of God's grace every day. Because he is only 26, we have been told this is very unusual sooooo......besides putting on weight, from the steroids used to reduce swelling. He is back to fairly normal activity. Maybe we can travel the path together and compare notes?

Woodsymom's picture
Woodsymom
Posts: 13
Joined: Jul 2010

My son was diagnosed in June/2010. He has undergone a Craniotomy at the temporal lobe July 16, 2010. He got married 8/14, 2010. Now we are preparing for Radiation Therapy with our first appt on 9/7/10.

Astrocytoma, as I understand it is a very aggressive cancer as well. We are approaching radiation with the hope that it will put the tumor to sleep. Hopefully, chemo will not be necessary right away. We have heard you do not want to use everything at once because it limits your options later.

What was your strategy for success?

Thanks for any and all info you provide.
Woodsymom

Fusionera
Posts: 10
Joined: Oct 2009

Dear Woodysmom,

I would not delay the chemo at all, especially if he can start Temodar. This is NOT something to fool with, as I know from personal experience. After I finished radiation therapy, my grade III appeared to be gone. I was put on PCV chemo as a "preventative measure" since the tumor bed looked clear on the MRI at the end of 1995. Within 2 months the MRI had changed and in April of 1996 I had a second surgery. I was then put into the Temozolomide clinical trial. The drug saved my life. The radiation only temporarily held the tumor at bay...Grade IIIs are best treated as aggressively as possible.

Talk to his doctor about the options available. Everyone reacts differently to different therapies, and some are effective on some people and not on others. Best of luck to you.

Johanna

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

i agree with Fusionera, my doctor told me they could not remove my tumor but could continue to give me temodar (chemo) and extend my life for a long time

Woodsymom's picture
Woodsymom
Posts: 13
Joined: Jul 2010

On February 23, 2011, my son went to an MRI review with his radiation oncologist. At that time, he said Loren is cancer-free. Praise God. He is to have follow-ups every 3 months with a neurologist. This first follow-up all the neurologist did was ask him how he was feeling and congratulations on the status. My son has this idea that MRIs are no longer needed and probably doesn't need to see a doctor for a bit. I am going to have him ask if an oncologist needs to be a referral or what should happen to monitor his status a little more closely. No Temodor right now. No chemo. I am apprehensive my son is not staying more vigilant with medical follow-ups. He was diagnosed Stage III: Anaplastic Oliogodendroglioma 5/2010.

Alexanderson's picture
Alexanderson
Posts: 3
Joined: Aug 2011

I am glad to hear about your son ! If there is some more information how to deal with this disease please don't hesitate to write me !
Best luck !

sadinholland
Posts: 238
Joined: Apr 2011

Woodsymom,
I am so happy to read your post as my husband is fighting the same tumor. He did however, have radiation and chemo. Last does will be the end of this month.Your story makes me feel so much better, knowing there is hope when you have been dx with a anaplastic olio. grade 3.

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

I have the same as your son. got sick in june 2010, had open brain biopsy nov 9, 2010, and not long later got pathology report from JOhn Hopskins. Anaplastic oli. astrocytoma aggressive grade 3. they started me on radiation and chemo (temodat) on Dec 21, 2010 to feb3, 2011, then restarted chemo (temodar) march 3, 2011. i have to do it for 6 months for 5 days every 28 day cycle. they say they are surprised and very happy to see me doing so well. i am also on seizure med. keppra. this has totally changed my whole life, work and everything. i keep u and ure son in my prayers

Toshy's picture
Toshy
Posts: 23
Joined: Jul 2010

Adding my support and encouragement :)

I was diagnosed when I was 7 in 1977. It was in operable as it was on my brainstem (Astrocytoma on floor of 4th ventricle). I had radiation treatments in late 70's, chemo in early 80's. A couple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!

corals505
Posts: 2
Joined: Nov 2011

An anaplastic astrocytoma was found not in my brain, but inside my spinal cord (T9-L2) when I was 27 years old in 1981. I'll put the long story on my profile, but the short story is that I had surgery to cut out the tumor followed by 22 treatments of radiation therapy to kill off the remaining cells that adhered to the left side of my spinal cord. I was in the hospital for two months and because the surgeon had to cut into the spinal cord to get at the tumor, I had paralysis of the legs. With the skill of a terrific surgeon at NYU (who is still practicing today) and a team of wonderful physical therapists, I regained my ability to walk and have lived a healthy life for 30 years. I did not have chemotherapy. It took about a year to be walking normally again, but the tumor never came back. All of the doctors, including my neurosurgeon, were amazed.

I just wanted to write in and encourage people. I want to let you know that an anaplastic astrocytoma is not a death sentence. My mother is 95 and I plan to live that long as well. Best wishes to all of you.

BOSBEK
Posts: 4
Joined: Feb 2011

I am grateful to know that you are a ten year survivor! My Husband was just diagnosed and has had a crainiotomy with patial tumor rsection. Hi stumor is in the temporal and frontal lobes and was the size of golfball. He origionally presented with only having his strange flowery smell fom whch he could not escape. After undergoing ebery test or cardiac issues in the ER he was finally given an EEG which showed abnormal spikes in the frontal lobe. From there we have gone to MRI, diagnosis (Anaplastic Astrocytoma III). He is now in his third week of radiation along with Temodar. This is quite the journey! Would love to hear from those oing through this as well.

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

I have anaplastic astrocytoma grade 3. they tell me ill have this the rest of my life. ill be on chemo and seizure med for rest of my life. they cannot remove tumor cause of it location. will i ever be normal again, will i live long enough to see my daughter raised. this is my prayer more than anything

Tomaszrubin2
Posts: 2
Joined: Jul 2011

i am 21 and i was diagnozed with astro.. grade 2 in dec 2010 and i have one question to mate which is holding with it over 10 years do You smoke cannabis mate ? I am asking because i am an adict of cannabis and about 6 month before diagnoze i have stopped smoking weed and after a month since i stoped smoking i started to getting them weard fellings and tunnel vision or whatever You call it. I am just thinking is there some chance that weed had something to do with it ?

Thank You

KellyAK2011
Posts: 22
Joined: Oct 2011

I don't think there is any evidence whatsoever that states smoking cannabis has anything at all to do with brain tumors - either positive or negative. I have read some research on the health benefits of ingesting cannabis. Taking it into your lungs is not good for you, but it likely has nothing whatsoever to do with developing a brain tumor.

Kelly

nailand1943
Posts: 2
Joined: Jul 2011

HI,everyone, i am living in canada, one of my cousion was dignosed with stage3 anaplaastic astrocytoma earlyer this year. she is only 30,and has a cute little boy who's only 5. All my families feel so sad.

She already got a surgery and taking chemotheropy right now. Her husband heared about this immunization theropy from one of their friend, but there was no detail supplyed. so they ask me to the search it for them, cuz they dont know English.But all I found about it are some essays.

So I am here to ask if someone knows anything about it?Is it been use widely? share with us plz if U have any idea or have heard anything for U doc.

THANK U SOOOOOO MUCH

Alexanderson's picture
Alexanderson
Posts: 3
Joined: Aug 2011

Thank you for trying to help others !
My mother have AA3 and she went operation now she is almost normal !
But need to go on radiation and I want to ask you if you know some information how to fight against this terrible illness ?
Thanks forward !

paulajuffer
Posts: 1
Joined: Jan 2012

I'm new to this site, just read it all and all of your thoughts and experiences gave me such a new look on this deseese. My mom was diagnose with AA3 week ago. She had tumor 3x5 centimeters that was removed 3 weeks ago. I looked into statisticks it doesn't look promising but reading all your comments is so encouraging! Is there anybody out there that beat the 10 years mark?
My mom's tumor was all remover she will start radiotherapy soon. She lives in Poland and the health care system is not as advanced there as here. Everybody that went through AA3 is talking about chimo- temodar. Is that standard for US or anyboday is doing radiation only. Is gamma knife in any use in that situation?
Thank you in advance.

wifeofmichaelvaldez
Posts: 3
Joined: Mar 2011

As of 11/23/11 the doctors at the VA hospital told us that they can not determine if the swelling in brain is just that or if it is the tumor its self.They informed us to seek a neurosurgion cuz they can not do anything more. My husband is giving up!!!!! As for me i am not. Any advice

Raani01
Posts: 70
Joined: Mar 2011

Hi,
Mayo clinic at Rochester ,MN has great doctors.

Kimberlyann72
Posts: 6
Joined: May 2011

My dad had a aa removed at johns Hopkins in march, he had chemo and radiation, and clean. MRI, we travel to md from Arkansas. I am an adult and an only child. Dad has a follow up December 5 with an MRI, the anxiety level with me is intense, I was doing ok, now I feel it is unmanageable. My parents do not know my extreme fear. I have OCD which makes it all worse. God has been good, but I feel like I am going to explode and what if it returned....I now hate seeing anything to do with the holidays...I need help I feel so alone, I know it is my dad that really needs the help, but what if I have a breakdown..p,ease email me if you want to talk...

Finnegans Mom
Posts: 12
Joined: Jan 2012

You can get through this. Have you seen a counselor? That may help. My son has a grade 3 thalamic tumor and I suffer from severe anxiety and I know we can get through this. Try meditation, prayer, exercise, deep breathing or learn how to knit. All these things help me.

Nicole (Finnegan's Mom)

Finnegans Mom
Posts: 12
Joined: Jan 2012

Hi,
My son Finnegan has recently been diagnosed with a grade III Anaplastic Astrocytoma located in his thalamus. He is 16 months old. He has already had two surgeries in which they removed 75% of the tumor. He is scheduled to have one more surgery, chemotherapy and possibly radiation. We have been told that his tumor is extremely rare and that children who are survivors cannot be found. I am searching for survivors of this type of cancer. I am searching for hope. My husband and I are so scared right now. I need to hear survivor stories. I need to believe that he will survive this. The Dr.'s say that they wouldn't be advising all this unless they thought he may survive. Are there any grade III anaplastic astrocytoma thalamic brain tumor survivors out there?

Thank you,
Nicky Mondroski

ForHope
Posts: 16
Joined: Jan 2012

I can't imagine how scared you must be about your baby's diagnoses. This definitely is a life changing experience. I just wanted to tell you that I'm sure there are survivors out there for all sorts of things that our human brain has long deemed over. Don't give up hope and keep fighting. Your baby will have a fighting chance. My brother has grade IV GBM and because of how fast it had grown they initially thought few weeksat the most but we just celebrated his one year old anniversary and he is living life to the fullest so keep believing. I'll keep you in my prayers

ForHope

Finnegans Mom
Posts: 12
Joined: Jan 2012

Thank you so much for your comments and kind words. I send you my love.

Finnegans Mom
Posts: 12
Joined: Jan 2012

Thank you so much for your comments and kind words. I send you my love.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

My heart felt broken for you when I read your pleas for information for your little baby. I cannot imagine your pain. I feel bad enough with my 28 year old son....but I think a mother's love for a baby is so fierce and protective...and a little baby is so helpless and hasn't even started to have their life....I am so sorry beyond words that you are facing this.

I don't know if this will help you very much...but the doctors don't know everything. I have a good friend whose husband was diagnosed with an AA3 and they told her that he would live 6 months, maybe a year at the most. He lived for 24 years and died recently at 58 years of age. He died of congestive heart failure, not from his brain tumor. He also had a recurrence about 10 years ago and battled back from that.

So sometimes the doctors don't get it right. I also believe in miracles. I am praying for a miracle for my son and I will pray for that until one of us is no longer drawing breath. One of our doctors told us as long as you are breathing, there is hope.

Love, blessings, peace and strength to you. I will be praying for little Finnegan too.
Cindy in Salem, OR

Finnegans Mom
Posts: 12
Joined: Jan 2012

Thank you so much for your kind words. I read it out loud to my husband. They made me smile and cry. And the story of your friend's husband does help. I need to hear survivor stories. And thank you for praying for Finnegan. I will pray for your son as well. Do you have any helpful books that I should read?

Nicky
Madison, WI

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Nicky. Thank you for writing back to me.

I read Lance Armstrong's book, "It's Not About the Bike" and I loved it. He didn't have a primary brain tumor but he did have a bad prognosis and his cancer did end up metastasizing to his brain. But he beat it and I love his fighting spirit. And not only did he beat it, but he won the Tour de France I think SEVEN times after he had cancer. What an inspiring man! I also joined his charity LIVESTRONG on FB and I get a lot of encouragement and inspiration from their posts and links.

Here's another link that I like too:

http://livingwithbraincancer.com/default.aspx

It's maintained by the wife of a guy who has glioblastoma multiforme, which is a really difficult brain tumor. People who battle that type of brain tumor usually get a really bad prognosis--often like under a year or two. But this guy has been fighting it and living well since 2006. His wife is really faithful about updating their site, so they don't leave people hanging and wondering how he is doing and if he is still tumor-free. They are also very proactive about posting links and information on new research, etc.

Here's another site:

http://virtualtrials.com/survive.cfm

Great survivor stories! These are people with tumors that usually are given a grim prognosis. I love reading these stories because it confirms to me that sometimes people prove the doctors wrong.

You may have already found these sites because I have a feeling you've been doing quite a bit of internet research, looking for answers and help for Finnegan. The internet is a powerful resource, but be careful, because it can mess you up too. It can rob you of any feelings of hope if you are not on guard. I almost drove myself crazy when my son was first diagnosed because I read so many negative things. Now I read the bad stuff once, and anything that is good or positive or encouraging or hopeful...well, I copy and paste it and put it in a special file and I re-read it every now and then. I think it's important to nurture and guard and protect a feeling of hope and a fighting attitude. I let my hope slip and I'm having a hard time regaining the emotional ground back.

Finally, I have to say that I think the most important book you can read is the Bible. I read about 30 chapters in Psalms last night. It really brought a measure of peace and comfort to me.

Love and blessings,
Cindy In Salem, OR

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Nicky.

I was looking through these older posts and I saw yours and I wondered how you and your little boy were doing. I hope that he is recovering and that things are looking better for him and for you. Please, if you get a chance, could you let me know how he is doing?

Love and blessings,
Cindy

Finnegans Mom
Posts: 12
Joined: Jan 2012

Hi Cindy,
I'm not sure how often you check this. Finn had his third surgery in the end of Feb and after 3 surgeries they removed almost 90% of the tumor. The rest was wrapped around veins. He got a blood clot in his brain due to this surgery and has been on blood thinners since. They were holding off on chemo becuase he was on the blood thinners. His MRI in June showed tumor growth for the first time since we started all of this. We had 3 rounds of chemo and then another MRI. This past Monday we found out terrible news. The tumor is almost as big as when we started. Our doctors told us there is nothing else they can do for him. We are not giving up. Finn's info has been sent to 13 hospitals and 1 alternative center called Envita in Arizona. He is having accupuncture. I contacted a priest who has been known to make miracles happen. If you know anything at all that could help, please let me know. How is your son doing?

Nicole Mondroski

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Nicole.

I'm sorry I haven't responded sooner. I haven't been checking csn like I used to do, and I started posting more on the caretakers and the grief and bereavement boards.

I was so saddened and so heartsick to read about what you and your little boy have been going through. And after fighting so hard, to get such terrible news....I hate how much pain you must be in. I'm very glad that you are not giving up and that you have been trying other places. I hope that several of them can offer you some options. I will be praying for you and for Finnegan.

Thank you for asking about David. How I wish I could give you a good report, but I can't. He's home with us, on hospice now. He can't move anything except his right hand, and he can barely do that. He's totally bedridden---can't even sit in a wheelchair any more, can't eat--- he had to have a tube put directly into his stomach for food, water, and medicines. He's totally incontinent. He can't talk or even shake or nod his head now. But I think he can understand us. He seems to be pretty aware of things, and he's very sensitive to people's emotions. I've had tears in my eyes a few times in front of him, and he stared intently at me. He seems to be interested when he has company, and when I show him pictures. We have been able to keep his pain under control, and I'm very grateful for that.

The doctors said it's hard to know how much time he has left. Because he's young, he could linger on like this for a long item. But he could also have a catastrophic event, like a stroke, seizure, blood clot, and it could be over instantly. I am living one day at a time, and I try not to think of what tomorrow may hold for us.

I don't know of anything to tell you to try to help you--but I want to encourage you to keep on fighting like you are doing. And I'd like to suggest that you contact NIH in Maryland. They were so good to us, and they paid for everything. Even our cross country plane fares, hotels, and a food allowance. For both me and David. They might have a clinical trial that could help your little boy. (NIH is the National Institutes of Health.)

I cry so much, and in my heart, I cry out, "My baby, God! My baby!" David is 29, but in my mother's heart, he's still my baby, my son that I love with all of my being. When I think of how little your baby is, and how you can't even tell him why you are doing the things that you have to do, I can't imagine how much your heart must be broken. I will keep praying for you and for Finnegan.

Love and blessings,
Cindy

bikegirl
Posts: 1
Joined: Mar 2012

Hi everyone! i am trying to find hope somewhere on these pages. My new daughter-in law, 28, was diagnosed with AAIII just this week. Well at least that is what one group is saying. Three groups and none agree with one another. Finally she was turfed to UC San Diego and they are also seeming to take forever to diagnose. She had to have craniotomy 3 weeks ago to relieve pressure, otherwise she would have died. She will be without 40% of her skull for about 5 months. SHe has lost a lot of left side function and currently cannot walk.

Does the brain swelling go down eventually? Do physical and mental functions return?? Not a whole bunch of hard answers from the docs.

caroline_v
Posts: 1
Joined: Jul 2012

Hi,
My name is Caroline VanDeMark and I am 21 years old. I recently got a CAT scan because my head was hurting a lot and they found a tumor. Thankfully it was operable, so the surgeons were able to remove the whole tumor. And it is now diagnosed as a small cell glioblastoma. The neuro oncologist I am with now at Hackensack Hospital in NJ said it will be treatable in my case because of my youth, health and strength. Next week I am starting both radiation and chemotherapy. I would like to hear of your story. I'm sure it will give me hope!

ugne
Posts: 1
Joined: Jul 2012

Hi,

My cousin has 4th grade astrocytoma(brain tumor), had a lot of treatments, chemotherapy etc.is still getting worse its growing really fast,. she is at that stage now that she is not talking.
What have you done to survive your brain tumor and at what stage you where?
Thanks for your answer

Sincerely
Ugne

CoreyandIvy
Posts: 2
Joined: Sep 2012

Howdy, My Wife Ivy had a Grande Mal in July 2011 , Biopsy in August, suspected grade 3 Glioma. Surgery Nov 4th 2011 and diagnosed grade 2 Glioma, oligoastrocytoma. She went from Dilatin to Tegratol. She remains REALY sore ribs, back kidneys still possibly from the july Grande Mal?? But reallY POSITIVE, and enjoys life. No other treatment to date. Holding off on Radiation for now, untill we hear more examples, although the docs recommend it, it grew 25% since March MRI. Anyone heard of the Photon Genie? or Maple syrop and Baking Soda?
Corey, and Ivy from BC Canada

maggie65
Posts: 4
Joined: Feb 2013

Jose, I write to you in hopes your still a survivor of anaplastic astrocytoma grade 3 and can somehow help us shed some light to this nightmare we have been enduring since October last year, well to begin my husband and I both first true love since the ages 14 and 13 years old we both each had children in our previous marriages and divorced we just had celebrated our 2nd anniversary in October 13, 2012, my husband was diagnosed with a brain tumor October 25, 2012 just bearly a week later this brain tumor is called Anaplastic Astrocytoma Grade 3 after he left home to work plumbing in the city that never sleeps Manhattan the big apple felt what is called a charlie horse on his left leg as he drove his company vehicle truck the charlie horse quickly shot up his left side causing several seizures he was rushed by ambulance to The New York Presbyterian Cornell Hospital located on E. 68th Street near York Av four blocks from Hunter College, we have'nt had a piece of mind since nor any days of rest since this began, I been by my husband hospital bed side since this began spending 18 days, 7 days, 5 days, 4 days and most recently 12 days and then rehab in Baker Pavilion 17 floor at NYPCH we where told beforehand that my husband had a fighting chance being he was young, healthy and strong, didnt have any bad habits as he quit smoking cold turkey but after spinal tabs, blood analysis, MRI's CT Sacns. sonograms clinical trails of 30 days of radiation and 45 days of chemo therapy pills called temodar it has been a roller coaster ride to hell for us because let me say since the tumor we where told so many positives options then suddenly his tumor which is inoperable we where told has rapidly grown and he is now experiencing alot of dificulty spasms to his left arm, pain feeling sunburn sensation to his face, arm and leg, his allegic to morphine so his given all kinds and  types of pain nacotics medications to somehow ease his pain but this is causing him problems with bowel movments constipation and he takes nerve muscle relaxer, along with steroids and insuline as his blood glugose rise due to the intake of steroids. My husband is only 45 years old and because he married late in his 30's he has a son of 11 years old and a daughter only 10. I just became a grandmother, I have two sons and would love if my husband can recover from this illness and we can live at piece but thats just my faith and hope which I pray each day while in tears. I hope for a miracle and Im sure many on this broad will agree for their love ones to be cured. God bless those who are going through this hurtle of difficulties and somehow have lived to talk about it. Please if anyone else here has experience a miracle to this horrible disease please kindly share as we all here need some hope of faith. Take care

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