One patient with glioblastoma still alive nine years later
by stellaone2 on Sat Oct 27, 2012 12:41 AM
Who knew life could be so cruel. About a year and a half ago I met my soul mate, who had been diagnosed with a GBO in 1999. It wasn't until right before his third brain surgery this year, that we found out it was a grade 4. He is currently on temador for a year, doing radiation for a month, and has to take kepra every day for the rest of his life. But what's after that? This man means everything to me, I want to have children with this man, and have him there to be with me to raise them, but we are not so sure that that is such a good idea, considering two days ago, a "radiologist" said the life expectancy is about 1 1/2 years to 2, 5 years for 4%. I am devastated, however,I feel the same way I ever have, doctors aren't god, and miricles happen everyday. I guess I don't really know what to expect, im clueless, the doctors are very hush hush, and it's crap. He is 31 now, he is perfectly healthy(besides the tumor), and it's just so hard for me to imagine that things are going to go downhill. I don't want to lie to him or myself, or live in denial I really feel like he has to much purpose on this earth to leave it so early, I am holding on to mere faith here.
by jpearson472 on Sat Oct 27, 2012 03:36 AM
I am assuming you mean GBM. GBM is always grade 4 How much of the tumor were they able to get out. His age will definitely help him. But if he has had GBM since 99 I would be rather suprised.
by kat54 on Sat Oct 27, 2012 03:47 AM
I will be 20 years in Jan with GBMIV stay positive check out virtual trials.com there are many long term survuvos there. I will pray for the best outcome for you both.
by siblingof on Sat Oct 27, 2012 01:09 PM
by stellaone2 on Sat Oct 27, 2012 05:38 PM
Thank you for the responses. I am pretty positive that it is GBO. Every doctor appointment we go to, the neurosurgeon refers to it as a glioblastoma. At the beginning of this year, they told us he was riding the cusp of a grade 2, or 3. But two months before his 3rd surgery he advised us to act quickly because it had slipped into a grade 4. It is located in the cerebral cortex. The thirteen years that he has had it, it has been on the left lobe, but this year was when we had found out that it was slipping into the right as well. The last surgery they were able to remove about 80% they said, a little larger than a golf ball. Because of the location they are concerned with going for all of it because he could completely lose the functioning of his left side(it is already very weak), but to us if that gives him some more years on this earth, it's not that big of a loss.
by stellaone2 on Sat Oct 27, 2012 05:52 PM
They had told us that abuot 80% of it was removed. But because of it's location, they will never to be able to go for all of it successfully. This is all so new to me, terminology and all, but I am pretty sure it's a GBO. They are constatntly telling us about the grades he has gone through for the past 13 years, and we were positive that it was grade 2/3 at the beginning of the year. It seems like it grew like wildfire in just a few months. He went from no worries(as far as this thing taking his life so soon)to this an emergency, what is your next plan of action? There are sooo many trials and ecperiments, we are just hoping that theses docs arer leading us in the best direction possible. He had done a blood brain barrier and that was a year of terror. After this last batch of Temador and radiation, I believe that all we have left option wise is Avastin.
by stellaone2 on Sat Oct 27, 2012 05:56 PM
Of course we want to get as much out as possible, but they advise us that if they were to go in and try and remove the majority, he would completely lose the functioning of his left side(as it is already very weak). To us, him especially, that's not a big loss if that is something that will be able to give him some more time on this earth. We are hoping for anoher quick recovery on what would be his fourth surgery, and Avastin to really beat this thing.
by stellaone2 on Sat Oct 27, 2012 06:00 PM
Thank you, and I am very happy to hear 20 years, keep on fighting, that is amazing. I will have to check that out, thank you again
by jpearson472 on Sat Oct 27, 2012 10:16 PM
what do you mean he did a blood brain barrier? The blood–brain barrier (BBB) is a separation of circulatingblood from the brainextracellular fluid (BECF) in thecentral nervous system (CNS). It occurs along all capillaries and consists of tight junctions around the capillaries that do not exist in normal circulation.Endoth elial cells restrict the diffusion of microscopic objects (e.g.,bacteria) and large orhydrophilic molecules into thecerebrospinal fluid (CSF), while allowing the diffusion of smallhydrophobic molecules (O2, CO2, hormones). Cells of the barrier actively transportmetabolic products such as glucose across the barrier with specific proteins. This barrier also includes a thickbasement membrane andastrocytic endfeet.
Where is he being treated at? Is it a local hospital or a cancer center hospital? does he have an neuro oncologist or just a regular one?
by siblingof on Sat Oct 27, 2012 11:23 PM
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