GBM survivor?

onlyhuman

Hi all
My husband had a brain tumour (grade 3) in 2001 and we thought he was in remission when in March this year he had another seizure (first since 2001) and scans showed 2 new tumours (Scans in Dec08 were clean). He was diagnosed with GBM. The tumours were completely removed in March but recent scans (early Aug) show a recurrence about 2 cm from one of the original sites. I was wondering if you are or know of someone who in spite of recurrences has survived beyond the grim prognosis this condition brings with it?

sue Siwek

i have no experience but
i have no experience but would suggest that you google your question and you will get some answers. good luck.

Betsy Vane

Survivors
Dear Onlyhuman,

I am so surprised that you didn't get more response to this question. You may want to check out cancercompass.com - a while back someone posted asking for survivor stories, and the responding stories were heartening: http://www.cancercompass.com/message-board/message/all,29237,0.htm. Also, if you haven't already, you should get Ben Williams' book - he's a 14-year survivor. It's from 2002 but he has updated some of the stuff about treatment on his website. Jerry Kline's story is also worth reading http://www.jerrykline.com/articles/survivor/survivor.pdf and so is David Bailey's http://www.davidmbailey.com/bio.html. I know there are many others.

My 59-year-old mother was diagnosed with GBM 4 in May. She is being treated at Duke and so far they are not doing the usual palliative standard of care - they are throwing everything they've got at her, which gives us hope that she might survive beyond the few months that is the average. It is so hard to know where to land, emotionally - whether to be grieving or believing in survival. There's a sweet spot in there somewhere but it's hard to find.

I think you are doing exactly the right thing in looking for survival stories. We all drove ourselves nuts googling various phrases connected to her diagnosis and learning grimmer and grimmer things - which is why I disagree with the other respondent that you should just google it - yes, that can be helpful, but it can also be unbelievably painful. Better to reach out through actual human contact with something like this. When we made the conscious decision to stop looking for information on how grim things are and start looking for information on survival, it helped our morale a lot.

Good luck - you are not alone.

onlyhuman

Betsy Vane said:

Survivors
Dear Onlyhuman,

I am so surprised that you didn't get more response to this question. You may want to check out cancercompass.com - a while back someone posted asking for survivor stories, and the responding stories were heartening: http://www.cancercompass.com/message-board/message/all,29237,0.htm. Also, if you haven't already, you should get Ben Williams' book - he's a 14-year survivor. It's from 2002 but he has updated some of the stuff about treatment on his website. Jerry Kline's story is also worth reading http://www.jerrykline.com/articles/survivor/survivor.pdf and so is David Bailey's http://www.davidmbailey.com/bio.html. I know there are many others.

My 59-year-old mother was diagnosed with GBM 4 in May. She is being treated at Duke and so far they are not doing the usual palliative standard of care - they are throwing everything they've got at her, which gives us hope that she might survive beyond the few months that is the average. It is so hard to know where to land, emotionally - whether to be grieving or believing in survival. There's a sweet spot in there somewhere but it's hard to find.

I think you are doing exactly the right thing in looking for survival stories. We all drove ourselves nuts googling various phrases connected to her diagnosis and learning grimmer and grimmer things - which is why I disagree with the other respondent that you should just google it - yes, that can be helpful, but it can also be unbelievably painful. Better to reach out through actual human contact with something like this. When we made the conscious decision to stop looking for information on how grim things are and start looking for information on survival, it helped our morale a lot.

Good luck - you are not alone.

survivors
Thanks Betsy for your response. The initial google searches I did in March when hubby was diagnosed were very depressing. We were then told he had anything from a day to 2 years. Anyway, six months later we are still fighting to prevent him from becoming another statistic so there is still hope. He has been feeling a little down and it always helps to have positive survivor stories. Unfortunately most of the survivors are younger than him (he turned 50 this year) and so he has stubbornly discounted them.
I am sorry to hear about your mum but I am glad that she is receiving treatment to fight this beast called GBM.
We are in Australia and so the options are not as many as what you have in the US but we have not run out of options yet for hubby so I am keeping the faith.

Beckymarie

Survival for GBM
My 56-yr old husband was diagnosed in March of this yr. with GB Lv4. I too am having a difficult time finding positive outcomes. I have heard alot of very positive outcomes for people with brain tumors but when I ask what type of tumor or if it was operable (my husband's is not), I seem to hit a wall. His oncologist, although trying to be positive does not feel the prognosis is good. Who are all these people who are having success with these tumors?

amanda129lynn

feel your pain
Onlyhuman-
I feel your pain and heartache. My husband was diagnosed in July 2008. I googled everything, then fell into a deep depression everytime I left his side. Kris is doing well right now. He was treated with radiation, Temodar and a trial drug called Motexafin Gadolinium. The tumor shrunk considerably and the seizures became non-exsistent. This July, one year after he was diagnosed the tumor began to grow again... This past Saturday he had a 3 hour long seizure and lost control of bladder and bowel... he's only 24. After recovering from the seizure he seems to be doing better he is being treated with Sorafanib and CCI-779 now- another trial. My only advice is to love him and have fun, make memories while you can. I have become obsessed with pictures and videos. We are thinking of going to an amusement park this weekend, even though we can't afford it. Some things are more important that $$... Search for survivor stories and stay positive around him as much as possible and encourage family to do the same.
Hang in there

davidbdailey

Survivors WE ARE
I am being treated at Duke also at the Preston Robert Tech Brain tumor Center. I had my 3rd IV treatment there last week. and I get my MRI 1 week from Today. Can't wait. I already did my radiation treatments (30) and 45 Days on temidor) now every 2 weeks IV Avastin and CPT11. I han't had really any side effects at all. Just lost my hair on the one side fromt he radiation. and thats ok. Im on Decadon and Seizuer meds. Haven't had a Seizure since Aug 17th. I was getting them every 3 days. I feel great now. I do get up during night to have a cup of coffee and a couple of smokes. I let my wife know if i need to go our back. Somethings I do and then sometimes I wait a fews hours more.

Also as for Survivour check our this site: davidmBailey.com a 13 year+ survivor and more. YOU SEE when you read his story.. We just saw him Saturday NIGHT in Greenville at Fufman U. What a night that was. May GOD BLESS you and all of you who read this.

scarver

14 months and doing great
My dad was diagnosed with GBM in late July 08 with resection in Aug. 08. He followed up with radiation/chemo and is now on Temodar five days of each month. He will be 58 in a few months and is doing great! He has a few issues like some memory loss and gets tired easier than before, but we all agree it is a small price to pay for the good days in between. Since his initial treatments last year, he has gone back to Vanderbilt for an MRI every two months and they say each one looks better and better. Please tell your husband not to give up hope. It is possible to survive this beast and to live a full life at the same time! My parents have traveled all over the world since Dad was diagnosed and have seen grandchildren grow and are enjoying their retirement. I read an article by Dr. Henry Friedman from Duke University and he said that despite the grim prognosis, that GBM does not have to be a death sentence. He says that with many patients he is seeing that it has become a chronic disease rather than a terminal one. God bless you and your husband as you continue down this road with all of the ups and downs that come with it. Just remember that for each bad day, there is another good one to be lived. Don't give up hope. Ever.

onlyhuman

amanda129lynn said:

feel your pain
Onlyhuman-
I feel your pain and heartache. My husband was diagnosed in July 2008. I googled everything, then fell into a deep depression everytime I left his side. Kris is doing well right now. He was treated with radiation, Temodar and a trial drug called Motexafin Gadolinium. The tumor shrunk considerably and the seizures became non-exsistent. This July, one year after he was diagnosed the tumor began to grow again... This past Saturday he had a 3 hour long seizure and lost control of bladder and bowel... he's only 24. After recovering from the seizure he seems to be doing better he is being treated with Sorafanib and CCI-779 now- another trial. My only advice is to love him and have fun, make memories while you can. I have become obsessed with pictures and videos. We are thinking of going to an amusement park this weekend, even though we can't afford it. Some things are more important that $$... Search for survivor stories and stay positive around him as much as possible and encourage family to do the same.
Hang in there

Feeling the pain but holding on to the hope
Hi Amanda
Hubby has since had another scan and the new growth has not done anything in a month so its looking hopeful. I have heard of many people who have had recurrences after a year but we got a little worried when his recurrence occurred just 5 months after surgery. He has gone back to work 2 days a week and seems to be improving. We are however making the most of our time together. We took our 2 girls to an amusement park a few weeks ago and are planning a week away together in December (the honeymoon we never had when we got married 11 years ago). Weekends are also filled with family time. I wish you and your hubby all the best in your battle against this disease.

onlyhuman

davidbdailey said:

Survivors WE ARE
I am being treated at Duke also at the Preston Robert Tech Brain tumor Center. I had my 3rd IV treatment there last week. and I get my MRI 1 week from Today. Can't wait. I already did my radiation treatments (30) and 45 Days on temidor) now every 2 weeks IV Avastin and CPT11. I han't had really any side effects at all. Just lost my hair on the one side fromt he radiation. and thats ok. Im on Decadon and Seizuer meds. Haven't had a Seizure since Aug 17th. I was getting them every 3 days. I feel great now. I do get up during night to have a cup of coffee and a couple of smokes. I let my wife know if i need to go our back. Somethings I do and then sometimes I wait a fews hours more.

Also as for Survivour check our this site: davidmBailey.com a 13 year+ survivor and more. YOU SEE when you read his story.. We just saw him Saturday NIGHT in Greenville at Fufman U. What a night that was. May GOD BLESS you and all of you who read this.

in support of survivors
All the best with your treatment. Sending positive vibes and well wishes to all who are fighting this disease.

onlyhuman

scarver said:

14 months and doing great
My dad was diagnosed with GBM in late July 08 with resection in Aug. 08. He followed up with radiation/chemo and is now on Temodar five days of each month. He will be 58 in a few months and is doing great! He has a few issues like some memory loss and gets tired easier than before, but we all agree it is a small price to pay for the good days in between. Since his initial treatments last year, he has gone back to Vanderbilt for an MRI every two months and they say each one looks better and better. Please tell your husband not to give up hope. It is possible to survive this beast and to live a full life at the same time! My parents have traveled all over the world since Dad was diagnosed and have seen grandchildren grow and are enjoying their retirement. I read an article by Dr. Henry Friedman from Duke University and he said that despite the grim prognosis, that GBM does not have to be a death sentence. He says that with many patients he is seeing that it has become a chronic disease rather than a terminal one. God bless you and your husband as you continue down this road with all of the ups and downs that come with it. Just remember that for each bad day, there is another good one to be lived. Don't give up hope. Ever.

I agree its not a death sentence
Hi scarver
I completely agree. We were thrown by the initial diagnosis but have now settled down a little. Unlike people who die in an unexpected car crash at least hubby has a fighting chance. He has improved a lot since his op in March. He has some short term memory loss and definitely is more tired but he is also softer and we are smelling the roses more. We recently found out that the new growth has not grown in a month and is very small (abt1-2mm) so we are keeping our hopes up. It is however a long battle and I feel like we have to be prepared for wherever this journey takes us. We go to a support group once a month and at the last meeting hubby went without his beanie for the first time (i.e he felt good about himself again) so I was excited but then everyone else seemed to have deteriorated over the month and that got me worrying again. I am normally the eternal optimist but this is making me into a worry wart.sigh.
I wish your dad all the best.

davidbdailey

Check out DavidmBailey.com 13 year survivour
He is going strong and when you read his story he had another one return last year and is doing great now. WE love his music and saw him sing last month here in South carolina. I got to shake his hand and we gave each other a big Man Hug. His is our inspiration every day. SO PLease check out his site. YOU will feel better and have great HOPE! May GOD BLESS you all.

Unknown

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