One patient with glioblastoma still alive nine years later
by PRaoGuerra on Tue Jun 14, 2011 08:26 PM
by cjsbama on Tue Jun 14, 2011 08:38 PM
I am so sorry that you are here and your dad has this monster. As far as I have learned there is no reliable timeline. My Tony simply forgot some words one day. We started looking for stroke and ended up with GBM 4 The doc said it was very large and agressive but would not have been ther 3 months ago and the speech was the first sign we would have seen. He is still here today fighting this beast and it has been a 28 month journey so far. There are lots of people who have survived longer and unfortunately lots who have not survived very long at all. For what it is worth live every moment and love every moment. create as many positive memories even small ones as you can. Its a rough ride but there are lots of people here who have great insights so ask anything and you will get answers. cry and you will get a shoulder. laugh and we will all laugh with you.
Hope Peace Love
by Don1500 on Tue Jun 14, 2011 10:53 PM
I am sorry for the path you find yourself on.
My wife had the same thing as your dad. The day after Christmas ('09) she had a "Stroke". But it wasn't a stroke it was cerebral edema caused by the GBM. If there had been a bleed they would have used a clip to seal the vain. There was no clip when they went back in to clear the infection caused by the first Crainiotomy. This cause them (different hospital) to look further and that is when they found the GBM. 1 Year, 1 month, and 10 days after her first symptom she was gone.
by Tortuga on Wed Jun 15, 2011 03:30 AM
5 years ago we were told that the median survival was 2 years. I asked his doctor if she had any patients surviving more than 5 years and she said, 'Yes." I asked if she had any patients surviving 10 years and she hesitated before saying, "Yes." I asked about 20 years and got no response. So far my husband has beat the odds. I hope your father does, too.
by TheBeast2 on Wed Jun 15, 2011 04:20 AM
So sorry Bout your dad.. Stats are just that stats. Survival rates do vary greatly. What the survival rate dont tell you is what those that survive had to go through and the quality of life they had...It is amazing what the human body can go through and still hang on to life.. No one can tell how long your dad might have years, months, we just dont know everyone is different in the treatmeat and in the way the tumor response to the treatments, location, size of tumor, so many things play a role in the survival time.. We all know this just like you know now is that the tumor likes to hide its self and not show any signs it is there til it has taken every cm of space it can, then it starts to push on something that gives us a clue its there. But aggressive means very AGGRESSIVE it is looking for any breaks in treatment or any way to outsmart the cancer drugs.. Now you have to remember your not just dealing with a tumor you are dealing with the side effects of treatment as well.. Also what parts the tumor is pressing on. I dont know how much of my dad in laws "progression" was tumor pressure causing effected areas to die off and how much was side effects from drugs but in a whole year and half the tumor never grew never changed more then a mm one way or another so swelling, steriods, radiation, chemo, even winter and not being able to get outside, etc. who knows but he kept declining he was 62 when dx. working 50 Plus hours a week to the last few months sitting in his favorite chair doing nothing.. So I'm sure all the above; the tumor pressing so long on parts of the brain, swelling, steriods causing muscle weakness, temodar causing a gen. rundown of the body, avastin wasn't on it long enough to know exactly what problems it would have caused, but had pnemonia twice in the few months he was on it. Never doubt these drugs are necessary because they are! It may not have bought my dad in law YEARS but it gave him over a year to live and love his family before he was called home!!
love and prayers are with you and your family!
by annecortes on Thu Jun 16, 2011 01:17 AM
With GBM, like all cancers, there is much cell biology involved in who makes it and who doesn't. With my husband's brain tumor I got a copy of the pathology report and made sure I understood every aspect of it. The stats are grim, and mysteriously, a few folks make it longer than "average". Also, age and health status at time of diagnosis play a small role. There are some trials going on for vaccines - a member of our local brain tumor support group is 2 years out from diagnosis and is in the vaccine trail with no recurrence. Also, I saw a clinical trial for DCA for brain tumors.
Don't be overwhelmed by the statistics. Connect with in person and on line support groups for brain tumors. I was diagnosed with advanced breast cancer in 2005 so when my husband was diagnosed with brain tumor in 2009 I thought I knew something about cancer. I did, butI didn't know muc about brain tumors - they are different in many ways.
Thank you for your post and warmest regards to you and your family at this difficult time
by Beatruj01 on Mon Jun 20, 2011 02:59 AM
by Gaylec on Tue Jun 21, 2011 05:46 AM
UCLA publishes the survival rate of those under treatment at their facility
But stats are just stats. Each person has their own individual set of circumstances - age, how early detected and treated, how much resected, and other factors. When I asked our doctors how much time my husband had, they said that they don't put timelines on patients.. until such time as when treatment is not longer an option.
It has been almost 5 years, and we are begining to see signs of a recurrence, but my husband is still giving it a good fight, and have other options to explore, if it comes to that.
I remember how overwhelming it was when he was first diagnosed. The upheaval, uncertainty, etc. Eventually things calmed down to a manageable routine (after chemo, radiation)
All the best to you and your family as you fight this beast. You will find that there are a lot of people here to lend emotional support and share some good information.
Good luck and God Bless
by Luvingwife on Thu Jun 23, 2011 05:27 PM
I remember very well the feeling of frustration and confusion you describe. I wanted black and white answers when my dh was first diagnosed and during the initial treatments. I wanted FACTS! I now have a better sense of the way the real world of GBM treatments operates. Now I understand that the statistics and the prognosis discussions are just educated guesses. Remember they call it the 'PRACTICE' of medicine, and treatment of this disease is more an art than an exact science. We are now 7 years since diags and surgery, with many treatments since then. My husband's doctor calls him an 'outlier, ' and we appreciate how unusual his case is. But there are more and more long term survivors, because there are more and more treatments available. Why can't your loved one also be an 'outlier' and defy the statistics? Keep in mind that the only statistic you are really concerned with is YOUR patient.
Of course it is frightening, overwhelming and yes confusing. In my case, the frightening, overwhelming confusion calmed down after the initial 6 months. Each day was better once the daily radiation treatments ended. Some days we could even forget for a few minutes that we were living under a cloud. Speaking for myself, now that I have been under that cloud, I appreciate the sunny days more than ever. It is not a cliche, it is true. You appreciate the mountaintop after you have been in the valley. God has blessed us in the middle of this horrible disease, and, sadly, I don't think that I would have recognized those blessings without this cloud.
best to you and your loved one. Just keep on putting one foot in front of the other and just take the next step.
by GScott on Sat Aug 20, 2011 10:56 AM
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