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Glioblastoma multiforme 4

Posts: 36
Joined: Sep 2009

I have GBM4. I was diagnosed on 12/15/08 and had surgery on 1/13/09 to debulk the tumor.This was after being told for a month that it was inoperable. I had 6 glio wafers put on the tumor base at the time of surgery. I had 6 weeks of radation and have been on Temodar chemo ever since I have had a few problems but not many. The biggest problem was with my eyes, they have pretty much corrected this with prisms on my glasses. The biggest question I have is having been doing pretty good for the last 10 months does anybody have an idea what I can expect in the next months or years a ahead. I have read all of the stats and they are not good beyond 14 to 16 months of diagnosis. Is anybody out there where I am or beyond and how are you doing at this point. My doctor never seems to want to comment on this. I am not asking how much longer am I going to live. I just want to know what to expect in the months ahead.

Posts: 358
Joined: Aug 2009

I can't really say what you can expect with the tumor, as my husband was diagnosed in March 09 so you are actually ahead of us. His tumor was inoperable and this was confirmed by several doctors. He went the radiation/temador (sp?) protocal and initial MRI showed good results but another MRI 2 months later showed the tumor was growing again. He has started avastin and the most recent MRI showed a significant reduction in the tumor.

I am not having much luck in getting information. I've actually posted on this website a couple of times trying to find out if those with operable tumors do better than those with non-operable. Did not receive much info. Our oncologist is also non-commital about the prognosis and what we can expect down the road. Feel like we are in this fog with no idea what is ahead or what to expect. Hopefuuly you will get some responses to your posting. Good luck.

Posts: 2
Joined: Oct 2009

My husband was diagnosed in July 09 with a GBM IV in the PONS of his brain stem. After intense radiation treatment and two rounds of Temador, the turmor continued to grow agressively. Late last month they said there is nothing more they can do and referred him to Hospice Care. I read about Avastin but noticed it was used for other types of cancer/tumors. What part of the brain is your husband's tumor located? The results your husband got with Avastin seems hopeful.

Posts: 9
Joined: Jan 2010

My husband was diagnosed right after Christmas with GBM IV on his brain stem. We have been told that it is inoperable. I have read on this site where some people did have there brain stem operated on. Not sure what to think. We are doing the radiation and temodar. God bless and best wishes.

Posts: 1
Joined: Nov 2009

It sounds like you are on the right track. Please check out this amazing story. http://www.davidmbailey.com/home.html
My sister was diagnosed after her tumor wasthe size of an eggplant. It was her second cancer. Read the story fo David Bailey. Read about his doctors and he gives good advice. Fight, fight FIght!

Posts: 102
Joined: Sep 2009

Hi Rick
My husband was diagnosed with GBM4 in Mar 09, had his tumour removed in Mar 09 and has been on Temodar 5 on 23 off since April. As I understand it several things like age and general health before diagnosis and recurrence affect prognosis. I have encountered stories on the net of people who have had GBM4 for over 5 years, over 10 years etc and are still around. I know what you mean though about wanting to know what happens next...in between scans, when hubby is doing well, life almost seems normal and I start worrying about a sudden change. Then there are weeks like this week when his symptoms have increased and he is not doing so well and noone can tell me if things only go downhill from here. Hubby's scan in July showed a new growth but subsequent scans in August showed the new growth was very slow growing and so he is continuing on Temodar for now. I think we are not told what to expect because noone knows...each tumour behaves differently and causes different symptoms based on position and each person reacts differently to the meds.
Like I say to hubby, life is about living, not about waiting to die. Its hard but we have to get on with living life.
All the best

Posts: 2
Joined: Nov 2009

Im 29 and was just diagnosed with the same GBM4 right in the brain stem 3 week ago. I had a biopsy last week an it was confirmed it is glioblastoma Grade 4 cancer tumor. Im having treatment in 2 weeks and then chemo/radio after for 6 weeks or however long. What nobody will tell me is the survival rate,I know its all about positive thinking etc but is hard sometimes when you have nothing else to think about.I just need help an someone to talk too about this..

Posts: 2
Joined: Nov 2009

I'm 21 and I was diagnosed with a 5cm GBM4 in my right parietal lobe on Oct 2nd and I had it successfully resected on Oct 6th. I started radiation and Temodar on Oct 22nd. Last week I started losing my hair so I've been kinda focused on that but I try not to think about statistics because I plan on being my own statistic and so should you. The only thing I can do is make the best of what I've been handed in my life right now. I'm still working on walking correctly right now too because the tumor put pressure on my motor functions of my left leg and foot.
I'm still new at this whole game too but there are people with GBM who have survived for many many years and those are the only statistics you should think about. Best wishes.

NCAA XC's picture
Posts: 25
Joined: Nov 2009

On August 26th 2009, my world came crashing down.
I came home from work to find my wife laying on the floor.
I took her to our local emergency room, where she threw up 4 times, but they let her sit for nearly 4 hours.
Finally, I wen up to the lady and said "mam, my wife is going to die in your waiting room"
She took us back to where I ran in to a running buddy of mine who happened to be on duty.
He took care of Jo immediately and took her back to get a cat scan.
He came out shaking his head and patted me on the shoulder.
They had already called in a neuro surgeon and surgery was performed a day later or so.
That surgeon told us that is was Glioblastoma category 4.
As he was talking to us, I noticed my wifes blood on the cuff of his pants.
He said that there was no more that he could do, it was aggressive and would come back and asked whether or not we had an oncologist in mind.
At the time, I didn't know the difference between an oncologist and a car mechanic.
I said no and then he said that all of them were good in our area.
My sister asked him if it would be good to go to a place that specialized in this form of cancer.
He said "no, they will all treat her the same"
My sister and I really insisted that we take this further, so we got a US News and World magazine out, the issue that rates hospitals and we saw that, at the time MD Anderson was rated number 1.
Were there buddy!
We took my precious wife there on September 9th ('ll make this shorter)
When we walked in there they knew who we were.
Hundreds, thousands of patients, but a team of docs came in and already had a plan for my Jo.
"She needs further surgery said our oncologist Doctor Puduvalli.
He had is confer with th surgeon Dr. Prabhu, who told us that only 20 to 30% of the tumor had been resected and that he needed to go back in to do more.
Of course we agreed.
She had her 2nd surgery on September 18th 2009.
Doctor Prabhu got it ALL.
My sister, Dr's Puduvalli. Prabhu and their staffs I feel are responsible for any xtra length of time my precious Jo has and I hope it's very long.
Not that, that is the end of the story..only the beginning.
I know the deal with GBM.
After spending 5000 bucks on motel fees..we RELUCTANTLY went back to our home with a protocol from MD Anderson.
We found a good place for my Jo to get her treatments
She is on Temodar and radiation 5 days a week.
During the operation...the anethesiologist woke her up and had her talking to me as I was in the waiting room as they were working on her.
We go back to MD Anderson in January and I'll carry her on my back if I have to.
She is in great shape so far after 4 weeks of therapy and walked for 2 hours with me in a state park last Sunday.
Not bad after two craniotomies and chemo/radiation.
I feel guilty though..
I feel bad about her not working.
I talked her into calling some of her co-workers tonight in the hopes that she'll get fired up to work..
I think that will be a distraction for her..maybe I'm wrong here.
I'm not much into statistics myself..we never had any kids and Jo is my whole world.
Always has been..She just turned 50.
We were going to retire in less than 2 years (I'm 55)
I can't get that kicked inthe gut feeling out of my stomach.....
every one here knows what I am talking about.....
I hope all of you the best as well.

Posts: 9
Joined: Jan 2010

You say that you are having treatment in 2 weeks then radiation and chemo. If I may ask what treatment are you referring to? My hasband was just recently diagnosed with a GBM IV on his brain stem. We were told our only options were chemo and radiation. Thank you for any informtion

Posts: 18
Joined: Jan 2010

I've surveyed the members of my local cancer support group,... and it seems that I'm the only one who's named his GBM IV tumor. Alfie. (As in "what's it all about...). Diagnosed April, 2009,... surgery April 30th,... radiation and chemo then per standard protocols.
As with most of my life so far (I'm 66 y/o), I don't have any experience with this, either,... and so am making it up as I go along: writing the last chapters of my own life story.
And every day's an adventure,... a journey of discovery,... in Cancervivorville.

Good luck to all of us, fellow explorers.

Posts: 2
Joined: Jan 2010

my husband was told he had a stroke aug 1,09..went to reheb ,got better.Than slowly got worst,stopped talking an so on dec18 did another MRI and 2 masses showed on his brain.
couldn"t do biopsy till jan 4 because he had to get off plavic first, so we waited.
Jan4 did biopsy and was told Glioblastoma multiform IV.
sO ON MON we started treatment of 6 weeks radation and chemo 5days a week. They also said inoperable..
Does this effect your husband talking?
If you learn any thing new to help would you please let me know...
thanks judy wille jwille@cablene.com
i live in genoa,nebraska

Posts: 1
Joined: Feb 2010

I was diagnosed in Sept 2008 and had a partial resection the same month. I've been through 7 weeks of radiation and Temodar followed by 12 rounds of 5/23 Temodar. In the middle of my treatment I was removed from the Temodar because an MRI showed thickening of the walls of tumor casing therefore indicating the cancer may be returning. My oncologist said to find another oncologist for an alternate form of treatment. I went to UAB in Birmingham and their MRI showed that the Temodar was working & told me to stay on it. My MRI's were looking better each time I went. The last MRI showed no signs of cancer. They've stopped my Temodar and I'm now on quarterly monitoring. Let me say it does make a difference where you have your MRI"s done and who is reading them. The up-to-date MRI machines seem to portray a clearer picture as the older ones do not. The UAB team looked at my old MRI films and said they looked like something they would see in the mid 1980's. The doctor's won't say my cancer is gone but will say there is currently no signs of cancer. I understand they can't see microscopic feeders and who knows what they're doing. I'm coming up on 18 months and feel really good. I am tired due to the chemo and my short term memory is worse than before but I am thankful to God for each day he give's me. Each individual is different. I've taken supplements and done a lot of research. When you research make sure it's current. Survival rates have gone up compared to what they used to be. Hope this helps.

Posts: 2
Joined: Jan 2010

My husband is a 26-month glioblastoma survivor (diagnosed 12/3/07), has had all of the initial traditional treatments (6 wks rad. + temodar) + maintenance temodar 3 months after
first round. He had a recurrence Dec. of '08, so started treatment of Avastin + Ironetecin
(sure I didn't spell that correctly), but wasn't able to finish treatment because he got avascular necrosis in both hips which required surgery. MRI's after avastin were good. Tumor started to progress again in Nov. '09 & an additional tumor was seen in the corpus collosum
area, so started Avastin again with no chemo, MRI in December was good, additonal tumor disappeared, another MRI in January because of new neuro symptoms--MRI showed new lobulated areas, second tumor still gone. Anyway, I'm interested in what supplements you take, my husband also takes supplements that we got from the health food store after doing some research with the wonderful lady who works there. Don't know if they've really helped or not, but sure they can't hurt. We are extremely nutrition conscious, and I can't help but believe that this has helped as he feels good almost all the time and has never been sick throughout this ordeal. I would appreciate any info you have. What a blessing you've gone 18 months without recurrence. And you are right, survival rates are much better than they used to be.

Posts: 1
Joined: Jan 2009

I take once daily Super-Absorbable Soy Isoflavones. It has the highest concentration of soy extracts containing genistein and is made by the Life Extension Foundation (phone: 800-841-5433; website: lef.org). Fresh pomegranate juice, about 8 oz. in the morning. If not fresh then look in the fruit juice isle. Make sure it's pure pomegranite juice and not cocktail juice. I dumped the aspartame (NutraSweet). Vitamin D3, 5000IU once daily. Folic acid, 2mg once daily. Green tea...drink up! Vitamin B-12, 500 mcg. Throwing in some resveratrol wouldn't hurt. As always consult your oncologist before you start any supplements. I don't promise these will help but they surely won't hurt. They didn't hurt me. Oh, and a prayer or 2 at night won't hurt either. Hope this wiil help. Hope he'll make it another 26 months. Congrats on making it this far.

Posts: 3
Joined: Feb 2010

My father is law is just now starting his treatments.. You are where I am researching how can we keep it from coming back... The doctors say no cure and cause of the tentacles (blood vessels) that extend through out the brain it grows back... I am new at this so dont take anything I say as gospel. But from what I can tell we need to work on his immune system I believe the tumor is the symptom and getting rid of it is only a tempory fix, It is the immune system that is the root cause all of us have cancer in our bodies trying to take hold of us and it only succeeds after the immune system fails us.. So Im looking at nutition, juicing, natural things to rebuild the immune system and keeping it at optimal proformance....

Nutrition is a great thing but as our bodies get older it dont digest vitamins and things as it should and I believe juicing is great cause it goes into the system quickly and bypasses if you will the digesting process.(we dont poop out the good stuff or hold it in us until it is toxic).
I believe medicinal herbs have been way under rated in this country cause well if we could gather or buy at health food stores all we needed to thrive/cure/live a great quality of life. and not take the newest cutting edge meds. and treatments the pharmacial companies would be out billions of dollars in research funding and profits off all the drugs/treatments they sell us. You have done all the doctors have said if you are willing find a trust worthy health food store get to know a very up to date nutritionist and see how well you can build up your immune system and take cancer killing herbs what ever version you feel comfortable with you have done wonderful and made it further then some. If you are in a time when the doctors are just observing you waiting to see if anything grows why not take this break to build your body back to max. proformance if possible who knows it may never come back....
Something I am just now looking into is getting vitamins through IV it also passes the digestive system and the body gets full benefit of the vitamins.. I mean how many times have you taken vitamins and peed them out. Just something to think about

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