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inoperable GBM survivors

ssmartinez's picture
ssmartinez
Posts: 3
Joined: Jul 2008

My husband is 43 and diagnosed on July 8th. He has been having seizures since January and now has short term memory loss other than that you would not be able to tell he is sick. Because of his memory loss he has no clue he is sick. It's better this way as not to cause any depression. I am writing to find survivors of this. I know they are out there I just can't find any that are inoperable. If anyone could help please let me know. I need this for my own peace of mind. We have six children three adopted two with special needs. If there are survivors I know my husband can be one. Please help me find one!

joerullo
Posts: 9
Joined: Jun 2008

My father was diagnosed in June07 after hitting his head on the trunk of car by accident and got two MRI's. His tumor is glioblastoma multiforme grade IV. The cycle of care he went through was 6 weeks radiation taking temador 140mg at same time starting two days before radiation. After radiation my dad was on temador for about 8 months 5 days on and 23 days off. He went from 140mg during radiation, to 240mg temador for a couple of months, and then maxed out at 340mg temador calculated by his weight. He was on decadron from Aug07 cause he got a biopsy and stayed on till January or so. He was on 24mg decadron for surgery then tapered to 8mg to 4mg and 2mg for quite a while and then off completely. He is currently on Cpt11/avastin every two weeks at Memorial Sloan Kettering of Basking Ridge with Dr.Gavrilovic. I do not except anything except the next step and how we get there, what will be the chance of results, and what is the next treatment if it doesn't work. People suck, the media sucks, and alot of doctors suck. Don't listen to negative people because this illness is dependant on individuals health and strength to get through treatments. I believe that my dad has an advantage that he did not have debulking/removal. The tumor grew on the temador at the end because it killed all the cells that it could and the temador was no longer effective towards other forms of the cells hence the name multiforme for GBM. The good news is the first week of cpt11/avastin my dad was back and able to get around without effort. He started the cpt11/avastin may 15, 08 and we got the first mri mid june and the top tumor in his left temporal lobe bordering but not too close to the brain stem reduced 20%. That was miraclulous considering the tumor was the size of a quarter in June07 and was about the size of a half dollar with a quarter, nickel, and a dime attached. That one shrank again 20% and if it stabilized we would have been happy but the growth reversed. The second tumor borders the occipital in the left temporal lobe and wasn't even visual in june07 looking like a cloudy background on the mri. However, right before the surgery in Aug07 it bloomed to the size of a dime. That was the one we worried about because it grew every month through the fall into the winter Feb08. GOOD NEWS though that tumor the size of a quarter and a nickel next to each other in May08 is now 50% smaller due to the treatment. I hope you can get the cpt11/avastin treatment first but the protocol might be temador. I think that he has a great chance due to his age. There are certain schools of thought that believe that debulking can actually cause major damage for quality of life especially when there are meds that can reduce the size of the tumor in half or more like cpt11/avastin. And I am speaking in terms of the inoperable situation. I also will say that there are surgeons such as Friedman at Duke who are able to operate on complicated GBM cases many others won't. My dads surgeon was the best in the world in his 60's with over 20 years of teaching experience and the head of the brain tumor department had the consensus of the tumor board made up of the finest neuro's and surgeons in the world that a biopsy was possible without risk of death or major quality of life issues, but all agreed that surgery was out of the question as per quality of life. I am so glad that we went the chemo route except my dad was on temador a month or so longer than he should have due to. He went on Cpt11/avastin asap when i changed his local neuro to dr. gavrilovic at memorial sloan kettering at basking ridge new jersey. I have dealt with many doctors and this is a man of knowledge, understanding, empathy, and leadership. I WILL TELL YOU RIGHT NOW YOU HAVE A BATTLE ON YOUR HANDS WITH INOPERABLE BUT LOOK IT IN THE EYE EVERYDAY AND MAKE YOUR MOVES WISELY BECAUSE EVERY MOVE WILL EFFECT THE FUTURE. You can email me at stargazer46@comcast.net if you need me in your unique situation. Also, go to the national brain tumor foundation site and go to the messege post under GBM and Malignant and you will find post from me going back to 2007 and a full history that can give you a guideline for your husband. Also, go to the messege post archive section that goes back. You can do it. But, everyday and every minute you guys are together be grateful and enjoy all the time at the doctors appointments and treatments and fit in lunches and sight seeing if you can trust me. If you have no confidence in self, you have been twice defeated in the race of life. With confidence, you have won even before you have started. "Marcus Garvery".... Your thoughts control your emotions and your thoughts and emotions keep control of your actions. This illness is a challenge/a problem. There may not be a cure but there are solutions to many of the side effects and deadly twists and turns of this illness through treatment and meds for controlling symptoms. Just get as many opinions as possible and JOIN A BRAIN TUMOR SUPPORT GROUP it is important to be around survivors. Also, if you are not at a brain tumor center i highly advise one. God bless you and good luck. You can overcome the obstacles if you take in minute to minute and let go of the control of uncertainty at times and just live in the moment and most importantly be grateful for how much worst it can be if that makes sense. Print this out and keep this with you because this is from my heart to help you and I knew June07 he would make it Aug08. THEY GAVE HIM 9 months.....

ssmartinez's picture
ssmartinez
Posts: 3
Joined: Jul 2008

Thank you! currently my husband is in his forth week of temodar and radiation. He has two weeks left. This is the biggest roller coaster ride we have been on. He is taking Kepra for his seizures and was to take decadron. Due to the side effects of his temper we had to take him off he decadron and lower his kepra. I know this isn't helping him because he is still having seizures and he has headaches. But like I said before we have six children and it was making him want to fight the boys and myself. I never seem to have time to do anything any more. (he's mad at me right now so I have a few minutes before I need to get him his temodar and get him ready for treatment. I have asked not to be told how long the doctors think he has due to the fact I wanted to enjoy everyday and not watch a calendar. I still believe he will be a long term survivor but the road there seems to be so bumpy. I want more opinions for him but the doctors want me to wait till after treatment to get any. Then I need to find out how to go about it. Well time is up for me now, it's time to start pills and treatment in an hour. God bless you too! I will keep you and your dad in my thoughts and prayers.
Stefanie

gagesgamma's picture
gagesgamma
Posts: 3
Joined: Dec 2008

Hi, My name is Rhonda and I do have the tumor that makes you forget. My tumor controls my nerves on the right side of my body. I have light siezure spells and I take Gabapentin 3x aday. I did radiation and chemo. Chemo was for a year and 7 months.radiation was 6 weeks.
I am still working and enjoying life as much as I can. And yes depression does set in and I am on medication for that also. I live my life day to day. and pray alot. with friends and family.
Please feel free to contact me here or email me gagesgamma@yahoo.com

GMurphy
Posts: 2
Joined: May 2010

Hi!
My daughter, 15, is on her second GBM tumor - first was April 2008, removed surgically, had radiation, then Temodar, off Temodar by summer 2009, cancer returned in a different area (it was a ball before, now it's more scattered) in her brain in October, and they found it spread down her spine in November. It's not May and she actually just had an MRI, no results yet (but I'm thinking, so I'm here).

The thing is she's doing REALLY well!! And the doctors are positively tickled.

I know of a survivor - Ben Williams, PHD, He wrote the book "Surviving "Terminal" Cancer. He had a GBM. It can be done! He was really into supplements, which are actually amazing. Grace took some for almost two years, and hated it the whole time. She's refused them and now, frankly, her numbers aren't as good. But then she's not eating much either. Still, she's moving well, and that's huge progress from last fall.

I believe the success with her cancer is that we're doing reiki (SO easy to learn - I took the course & do it myself with her) daily, and hypnotherapy weekly. If you haven't read Bruce Lipton's Biology of Belief, it's a worthy read. In short, it has been scientifically proven, by Quantum Physics in particular, that perceptions/emotions affect us on a cellular basis. So if you resolve the negative memories they hold, you cure the cells. I am convinced this is why Grace does so well!! It's the future I'm telling you - look into it. It's working for us.

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