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GBM Grade 4

Taf
Posts: 4
Joined: Jan 2011

My Fiance has recently been diagnosed with a grade 4 GBM, he has had 60 - 80% surgically removed and will start Chemo and Radiotherapy next week.

Looking into the condition, there seems to be a mixture of stories in respect of survival. Has anyone had this condition for quite some time?

Beckymarie
Posts: 358
Joined: Aug 2009

I am sorry for what you ae going through. My husband was diagnosed with GBMIV in March '09. We were told a year or less and he did survive 15 mos. His was inoperable so having such a large portion of the tumor removed is certainly a plus. There is a clinical trial where a vaccine is made from the tumor. There seems to be some positive results from this study. Perhaps your doctor has more information on this. The time frame is so hard to predict. I think alot of factors play into the time...operable vs. inoperable, the grade, the location, the age of the patient. All you can do is take it a day at a time, very hard to do but really all you can do. Get as much information as you can regarding new clinical trials. My thoughts are with you both.

familyfighters
Posts: 3
Joined: Mar 2011

I read about how your husband was GBMIV. I am so very sorry to hear about your story. My husband was recently diagnosed a couple of weeks ago. His tumor is inoperable as well. His treatment is going to be radiation and chemotherapy through pills. I was wondering if you can give me some advice, on what to expect, or things that I should be doing? I don't know if your husband's symptoms are the same, but my husband is very tired throughout the day. Also, he has some short-term memory loss. Again, I am very sorry for your loss, and thoughts will forever be your way.

Beckymarie
Posts: 358
Joined: Aug 2009

I too am sorry to hear of what you are going through. Terry's sxs were fatigue, short-term memory loss, speech problems specifically difficulty with word retrieval. We initially thought it was due to stress/fatigue but CAT showed a large tumor on the left/mid brain. He also was initially on the radiation and temador (sp?) protocal. The radiation was very hard on him. The results were minimal. He then went on avastin and initial results were very good but eventually the tumor found its way around the avastin and started growing in various other parts of the brain. Things to expect: during radiation he may be prescribed steroids to decrease swelling. Steroids can be very hard as they can cause agitation and difficulty with sleeping. My husband slept about 20 hrs a day when on radiation but eventually came out of that. My advice is to get as much help as you can during this time. Take care of yourself as you are his caregiver. Asking and accepting help is difficult but this is so very important as you are on a difficult and exhausting journey regardless of how it turns out. I could go on forever. Be strong. You are in my thoughts.
Becky

RLR
Posts: 36
Joined: Sep 2009

I am a 56year old man and was told the same thing back in 12/15/2008. I was diagnosed on 12/15/2008 in Toledo Ohio and at that time was told it was inoperable. At that time they set me up for rasdiation and chemo. I even had to go to the UofM for a 2nd opinion. They too said it was inoperable and sent me home to start radiation and chemo on 1-19-2009.
On 1/11/2009 I became so sick that my wife said I had to go to the hospital.We were blessed by meeting a new surgeon.He asked why I have not had sergery,we told him severybody said it was inoperable. He said he would do it today if he could get me in. I was not until 1/13/2009 two days later that he did my surgery.(on 12/15/08 my tumor was 2.5 cm and on 1/11/2009 it measured 7.5 cm the size of a baseball!
The surgery went very well, he removed all he could see, and then placed chemo wafers on the tumor.These dislove in about 2 months.
Surgery was not much fun,in fact it was tough but well worth it. I went through the 6 weeks of radiatio and then Temodar chemo ever since. I am still on Temadar chemo for 5 days then off for 3 weeks.
I have been doing very well ever since. I can do most everything I did before, I have been driving for about 2 years now. I still have MRI's every 2 months. My last MRI was on 2/28/2011.
Probably my worst problem has been with my eyes. I have what is called 4th nerve palsey,which means my eyes no longer work together and I have no depth perseption. This too was pretty much corrected by putting prisms in my glasses. I now have a total of 13 prisms in my right lens. This may sound bad but I can see very well. I still drive ,bowl and doing a lot of jobs around the house.
If you would like to contact my surgeon please call or email me.
Please don't take the surgery is not possible as your final answer.
phone 419-592-1226
email-rriebesel@roadrunner.com

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Hello familyfighters ,going through this at the same time you are. We are a little over halfway through the radiation treatments along with temador and avastin.We wont know anything until that first MRI.Can you tell us a little more about your husband? Where is his tumor, how big is it? Im scared...This is the worst nightmare I just want to wake up...and I cant..

AaronWebber
Posts: 1
Joined: Mar 2011

Hi,
My granddad has just been diagnosed with an inoperable stage IV cancer in the brain. I'm afraid i don't have more details at the moment, i think it is in the parietal lobe somewhere around the ear, but it is too deep to operate.

He has option of radiotherapy or radio + chemo. And steroids. Otherwise is just matter of living and facing it, with all the challenges that will come.

They are going to fight it i think, with diet, PMA, love & kindness and the rest, as much as they are able.

But i was interested in this "vaccine" thing. They didn't mention that. Could you send me the link to the study, wherever you found it. I am a scientist by profession so i will read it carefully and once i know more about the type of cancer i might be able to suggest it to them.

Thank you very much!

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

Don't believe those statistics for they are just numbers and I've read stories of people beating those numbers. Stay strong and have faith

RLR
Posts: 36
Joined: Sep 2009

I agree, don't give up and have Faith! I have lived with it for over 2 1/2 years now and still doing good.You can read my stories above.
Rick

MAJW
Posts: 2515
Joined: May 2009

My closest friend of 26 years was dx 27 MONTHS ago with Gliobalstoma Multiforme stage 4...she had surgery, radiation, months of Temador...did well until last summer...tumor started growing again...went on an experimental IV chemo at Duke in Durham, NC...two months on that...bad side effects and tumor growth...has been on Avastin and Carboplatin IV ,every two weeks since August..she's lost the use of one arm and has great difficulty walking even with assistance. Her quality of life is greatly diminished..she sleeps much of the time....but her spirit is strong as is her sense of humor! She is 53....

Never give up hope!
Peace be with you

she21
Posts: 6
Joined: Mar 2011

My Prayers are with you both. My husband was diagnosed with a Glio grade 4 multiform with a midshift. He had surgery which debulked the tumour. Three weeks later the tumour had grown back 3 times the size. It was a struggle but we stood by each other until the end. He lived 6 months. My advice is to take one day at a time, as we all should. Love each other, the tiredness is all part of the scenario unfortunately. We only did radiation as chemo did nothing for the type of cancer cells he had, multiform. He was only 46 at the time, that was 11 years ago this July. Pray, the medical people can only do so much, but prayers are where miracles can truly happen. Never give up hope.

Roland1957
Posts: 4
Joined: Mar 2011

Get second opinions Trust your instincts,Stay positive I have worked full time since this all began 5 years ago today. Still working full time.

Luvphotog68
Posts: 3
Joined: Jan 2011

I was diagnosed in November 10 and this week I go back after having a month off of everything. Starting to go into panic mode but seeing your post honestly lifted my spirits!

siurzua
Posts: 4
Joined: Apr 2011

My husband who is 36 was diagnosed back then, tumor started to grow back recently and had other two growing as well... He has gone under 1 operation (80% removal) 6weeks of radiation and chemotheraphy.... He just started with Avastin two weeks ago and I can feel your panic to the core...

Pages like this give us lots of hope and shift the way we think... THANK YOU for coming here <3 <3 <3

RLR
Posts: 36
Joined: Sep 2009

I am now 56 years old. On 12/15/08 I was diagnosed with GBM4 as well. I too was told it was inoperable. I was all set for Radiation and chemo on 1/19/09. IOn 1/13/09 I became very bad and My wife took me to the hospital at 5:00am, we were lucky to have run in to a different surgeon he said he would do the surgery today if he could get me in. It took two days until I could get in for surgery. He removed what he could and set me up for 6 weeks of radiation and Temadar chemo pills. wich I am still on and will be for the rest of my life. I never went back to work but can do most everything I did before. I have a few problems like evertbody else, memory lose fatigue but my worst was with my eyes. I now have 4th nerve palsy which means my eyes no longer work together,and no depth perseption. It mainly affects my reading. I still drive and mow the lawn shovel snow and take care of my rental houses. They did correct my vision with prisms, I now have 13 prisms in my right lens that helps me read just fine.
I forgot to mention I live near Toledo Ohio and went to the Uninverity of Michagan and they to said it was inoperable. When I was diagnosed my tumor was 2.5 cm and 3 1/2 weeks later when I got so bad it had grown to 7.5cm (that's the size of a baseball). I have been through a lot but DON'T GIVE UP there is HOPE!!!! I am living proof!
Take care
Rick

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

On here looking for some kind of hope. My family member was diagnosed with GBM4.We are on day 19 of 30 days of radiation, Taking temador and avastin. They too said they cant operate. I feel like I am in a nightmare and I cant wake up. I want to hear about someone that made it. I know that its rare, but does happen....

flanagan18
Posts: 3
Joined: Apr 2011

Looking back on our journey, here are things I think are good to do....
I am not out to scare anyone anymore than you probably already are. I just want to give some information. these are my opinions only, but they are from experience....

I would insist on an MRI every month. Make sure the scanner used for brain MRI's is a 3T scanner, it has to do with how detailed the images come out.
We got an MRI every month for 2 1/2 years.
This is a beast everyone is dealing with. Never relax, never think its under control, research, research, and fight and fight. We did for 2 1/2 years. Oh yeah, and try to laugh along the way...it helps!!

My husband had a gr 3 astrocytoma which turned to a GBM. We originally were told a 3 and a 4 are treated the same because a 3 becomes a 4 (I believe now that was correct). There is soo much I want to say here.
I would get on a chemo right away as fast as you can after surgery. don't wait weeks..and stay on it if its working. temodar is the standard drug. there are others...

Get molecular profiling done of the tumor tissue. It examines the tumor tissue and comes up with chemos that would be most effective to target your tumor type.

Avastin does control things for a while for some, but then it can go bad quickly. Others have been on it long with very good results.

Bleeding is a very serious side effect of Avastin.

I wish I knew why some people do better than others. I think that the location of the tumor is key to a better outcome.

I am not sure about diet, we asked this question many times and never got a clear answer. But new research is starting to show diet is helpful in fighting cancers. You have to search to find info. Its the one thing we didn't take seriously that I wish now we had.
Who knows whether it would have helped...it couldn't hurt.

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