One patient with glioblastoma still alive nine years later
by future2020 on Thu Dec 06, 2012 11:53 AM
12/05/2012: Exactly two years ago today (12/05/2010), Hubby was diagnosed with GBM Stage 4 brain tumor. Fast forward to today (12/05/2012) - Hubby taken to Emergency Room with severe chest pains. Terrified. Suspected heart attack or blood clot. Tests confirm only (only?) pneumonia. Relieved. Given IV Antibiotics and prescribed oral Antibiotics and allowed to go home. Platelet count down to 26.
Next MRI scheduled for Jan 3, 2013.
Still on hold- neurosurgeon will do second craniotomy once (if) hubby reaches 100 (100,000) platelet count. Oncologist/hematologist working with us to try to determine continuing cause of low platelet count – but we know it is from the failed NIH aggressive chemo trial that ended on Sept 2, 2012. I am thankful hubby is still alive and with us. Has slight balance issues and also frustrated about platelet count. Thank you for letting me vent.
by siblingof on Thu Dec 06, 2012 06:10 PM
by future2020 on Thu Dec 06, 2012 07:33 PM
On Dec 06, 2012 6:10 PM siblingof wrote: You're just two days ahead of us. But we had the second craniotomy over a year ago, now inoperable. Hang in there.
On Dec 06, 2012 6:10 PM siblingof wrote:
Our neurosurgeon also told us that there "would not be a third operation" (if and when we get past a second one). This is just still so scary, even after two years, the idea of losing 30 to 40 or so years of happiness with my husband stuns me. Every day is so precious, just to still have him in my life. I love my husband so much.
I saw it mentioned somewhere else on this board, but I too get so angry/jealous when I see all those happy couples with grey hair out there holding hands.
To know that we are finally empty nesters and should be enjoying our best years, a long LONG future together…(Heavy sigh) Every day is a gift, and we are making it the best that we can.
by phyllischarles on Fri Dec 07, 2012 05:43 AM
Hi: Please tell that there was some advantage to having all this treatment. Is there any degree of quality of life to look forward to with this dreaded diease? Cause like you I loves my husband/friend so much. We found each other 3 years ago and were only just married in June. Now it seems our happy moments are fleeting. He keeps thinking the doctors aren't telling him something. I keep asking him what is it that you think they are keeping from you? And he has no answer. But I think what he wants to hear is that he can go back to his normal life with out the Karate Tournaments of course. He says that if this is all there is going to be in life for the next few years he doesn't know if he wants it. Just doctors pills and pain. Please tell me you have experienced more. We were just diagnosed in October and he is in his 3rd week of treatment. Thanks
by future2020 on Fri Dec 07, 2012 12:29 PM
Yes, there is an advantage to having all this treatment. Your hubby would be dead within months if he did not have it. The resection of 99% of his tumor has drastically increased his odds of living longer (with you at his side). Some GBM patients have inoperable tumors. The chemo and radiation are necessary to try to kill the remaining GBM cells that are floating around in his brain that the surgery did not/could not remove. The bi-monthly MRI’s after the radiation/chemo ends monitor the tumor’s progression (if any). While in radiation/chemo, my husband was prescribed Zofran for the nausea.
My husband spent 25 years in the US Marine Corps and retired an E-9 Master Gunnery Sergeant. Then he started his second career in the Federal Government. We were told to apply for disability retirement from the Gov. early, and that it would take 6-12 months to be approved; we applied six month after his diagnoses, since he felt fine and loved his job. Disability was approved in 17 days. The saddest day for my husband was when they told him he was being medically retired – immediately. He never smoked and drank very little and always stayed in great physical shape.
Apply for Disability Social Security – we did – they approved it the first time, no questions asked. GBM is a terminal disease in the eyes of Social Security. Someone mentioned here that after a one and one half year on SS Disability, the person then qualifies for Medicare??? I could be wrong.
After the radiation and chemo, Dr’s will most likely put your husband on a maintenance dosage of 5/23 Temodar. You mentioned somewhere that your husband is MGMT positive (active). This is good, because Temodar works much better for those with MGMT positive (methylated). While there is no cure as yet for GBM, there is “tumor control” for as long as possible. There are also clinical trials you can look into. Once the daily radiation/chemo stops, it is a little easier to forget for a few hours a day that you have been handed a medical death sentence.
My husband and I have grown closer. We have bought our burial markers and had it installed (my husband – always the planner). Wills have been updated and we have prepaid his funeral (he even wrote his funeral wishes and everything is in order).
The hardest part of all of this you will find - is the death of your dreams – your long future with your beloved spouse – growing old together. The 35 acres we bought in Colorado twelve years ago, to build our dream retirement home on? It is up for sale now.
Just six month ago we went to Aruba and a month later on a Princes cruise (England, Scotland and Ireland). I keep hoping my hubby is one of lucky 1 to 2% who survives for at least five years (or more!).
You must hang in there and be strong. It is the hardest thing you will ever have to do. Cherish every moment you have with your husband. And remember, if he gets angry/yells, it is only the brain tumor talking.
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