Young Adults Surviving Glioblastoma

Phil from NJ

Aug 9, 06 - 10:06 AM

Re: I am so sad today

Who did you see at UPenn? I am getting treatment there, too.

In Feb '06 I was diangosed and had to have surgery right away. My local physician recommended either Sloan-Kettering or UPenn; however, I was told Sloan won't take you unless they have a biopsy since they only take cancer patients (at that time I just had two brain tumors which they suspected were GBM due to the size). We decided on Penn because they have one of the best surgical departments, and also the Brain Tumor Board, so if it turned out it was cancer, I would at least have some continuity. It turned out one tumor was a grade 3 Ogliodendroma, and the larger one was GBM.
After shopping around (I got 2nd and 3rd opinions from Sloan and from Colombia), we stayed with Penn and signed up for their Phase 2 trial (it's this stuff called Poly-ICLC, in conjunction with the "standard care" of Temodar and radiation). I've had two post-radiation MRIs that have been clear, and I'm relatively happy with the care I've gotten there.

I know how you feel - I'd rather have cancer anywhere but my brain. Here's an excerpt from a recent update I sent to friends - I'm sure you have felt many of the same things:

" The news so far is good; I had my second "checkup" MRI on Friday
(I have them every 9 weeks) and it showed no regrowth of the tumors
thus far. Unfortunately, cancer can come back at pretty much any
time, and in the case of glioblastoma multiforme, it almost always
does. So although I feel dread before each MRI, and relief after the
two times so far it has come back clear, I just feel as though there
will never be a time when I can just sit back and say "I beat it." I
can just kinda hope I'm in the very few percent that make long-term
survival (5 or more years).

Back in March, April and May I went through radiation treatment.
It was 5 days a week for 7 weeks. I rode my bike to the hospital for
it every day in an effort to stay active. It was awkward at first;
there's an interior waiting room you go into that only patients are
allowed to enter. It is an uncomfortable thing, sitting in a room
full of people who, like you, have cancer. The room was always
strangely quiet; everyone knew why everyone else was there, but never
talked about it. I felt really out of place - I'm 27, and the
youngest person I saw after me was at least 50.
It's kind of screwed up, but seeing those people made me really
jealous. First, they were old, and had experienced many years of
life, had maybe got married, had children or grandchildren, before
this happened to them. Second, I knew some of them had colon, or
breast, or some other type of cancer - if push came to shove, they
could have the part removed, or maybe get a transplant. Although
that sort of thing would be a terrible experience that would be
difficult to bear, it might be an option in some cases. In mine, I
knew if things get very bad, they can't remove or replace my brain;
I'm trapped.
The actual experience with radiation wasn't so bad. They strap
you down to a table and get a soft fiber mesh wet with hot water, and
mold it over your body part that is being irradiated (in my case it
was my face and was pretty claustrophobic). Then they let it dry
into a hard face-shaped mesh, and mark it all over with a sharpie so
they could align the radiation beams. Every time I came in after
that, they use the same mask, pull it tight over my face and snap it
into place behind my head to immobilize it. I was laying on my back
on a table in front of a machine that I can only say looked like a
teleporter from Star Trek, with an arm that extended out. They
swapped lead plates in and out between each blast (in my case, they
went in with four different beams, so it was 4 blasts) to shape the
beam accordingly and give it the correct angle. They'd leave the
room and run a program for each bit.
The process was painless, but there definitely was some weird
shit going on. One of the beams always made the hair on my left arm
stand up; another beam always made me see flashes of blue light with
my eyes closed; one made me smell burning hair or something like
that. It was strange, but beginning to end only took about 10
minutes.
After about 3 weeks my hair started falling out - I could pull
handfuls out. So I just started shaving my head.
During the radiation I took a low dose of chemo 7 days a week.
Overall, I'm glad the radiation is over; once you do it, you've
gotten your maximum lifetime dose of radiation for that spot. So
even if the cancer comes back, doing radiation again isn't an option.

So right now I'm sort of living life 9 weeks at a time - I take
a high dose of chemotherapy the first 5 days of every 9 weeks and I
get pretty sick. Then for the rest of the 9 weeks I give myself
intramuscular injections of this clinical trial drug 3 times a week.
It sucks, but then again it seems to be helping so far. But it could
be worse - the chemo I am on is administered orally as a pill, and
makes me much less sick than the IV chemo drugs that are more common.
Pretty much as long as there is no change and the tumors don't
start coming back, the regimen doesn't change, because that means it
is working. After a year of chemotherapy, if things look stable,
they might try taking me off, but that sort of thing is at the
doctor's discretion, and doctors don't like to talk about "what ifs"
very much.
If an MRI comes back showing a regrowth, they will take me off
this chemotherapy drug and the clinical trial. They'll likely look
at surgery as a first option and eventually switch to another
chemotherapy drug. Seeing as the first surgery was easily the most
frightening and painful thing I've ever experienced, I'm not exactly
looking forward to any more of them.
I stopped shaving my head about a month ago, since I had to do
it every day to keep it looking even - the hair fell out in patches,
where the beams went in, and real, normal hair, no matter how short
you cut it, looks different than places where you are Jean-Luc Picard
bald and have no follicles. My hair is starting to come back in all
patchy, so now I looked kind of like a retarded skunk or something.
It'll be a few months before I can get a full head of hair again
(there's a chance some of the hairloss is permanent, but I hope that
isn't the case). Plus the chemo makes the hair growth slower.
I'm not working full time, but I am still in grad school and
work about 25 hours a week or so. They give me enough to keep me
happy and busy, but not so much that I get overwhelmed. Things are
pretty good these days. I get to work at a comfortable pace and stay
active. I spend a lot of time with Judy, just hanging out and having
a good time. I'm planning on some travel in the next few months to
see some friends and family. Mostly I just take it easy and do what
I want to do, which is pretty nice.

Best,
Phil
"

So although sometimes things look hopeless, there is SOME chance you will survive. Think about it - this is your LIFE - there is nothing more precious. As long as there is any chance whatsoever I can survive, I will wait it out and see. I think of the cancer experience much less of a "fight" as people put it, and more of a trial of endurance. As bad as things can feel on some days (and it is natural to feel down sometimes), there will also be good days, and those are what we live for.

Debbie

Aug 10th, 2006 - 9:37 AM

Re: I am so sad today

I saw Dr. Rosenfeld. Unfortunately, I wasn't eligible for the Poly trial, since I'd already had rad/chemo. Really disappointed about that. I'm afraid; I wish I could start w/ a combo, rather then just TEmodar.

Michele

Aug 10th, 2006 - 4:12 PM

Re: I am so sad today

When my dad had his surgery the doctor told us that due to his age and that it was a golf ball sized GBM, many surgeons would have just closed him up and told him to go home and get his affairs in order. Today is the 6 month anniversary of his surgery and he is doing wonderfully. He hasn't had an MRI yet and I think this is due to his age; he's 70. We don't know if the tumor is coming back or growing, but I know that he is enjoying his life, spending time with his family, traveling a little and except for moving a little slower and napping, seems like his old self. While my dad has gotten great treatment, RT and Temodar, I think that because of his age, his doctors don't have the same sense of urgency that a younger patient might generate. This is the only treatment he'll get, no trials for someone his age. Also, another surgery is probably not an option should his tumor reoccur. I love that my dad hasn't given up and he doesn't seem to have a minute when he believes that he can't beat this. I've recently read very encouraging statistics on the RT/Temodar treatment prior to reoccurance. Please stay positive, you all provide such encouragement to so many.

Debbie

Aug 10th, 2006 - 4:24 PM

Re: I am so sad today

I try to keep my head up; every day I can get up and open my eyes is a good day. It's just, this is a horrible dx to live with....day after day. But, we'll all get through

Terri

Aug 11th, 2006 - 1:04 PM

Re: I am so sad today

Debbie,
Some days are just really hard. We feel lousy. We use our box of tissues. And we are scared that the tumor is growing or coming back. That is alot for one person to deal with. We're here to listen any time even though probably a distance away in person our hearts are right next to you. I went very much into the "deep end" and am now taking Zoloft (antidepressant). It seems to be helping me. Depression can be a chemical imbalance just because our heads were cut open.
I was on Temodar 5/28 for 6 months. I thought I would be on it 12-24 months. My doc wanted me off because everything in my head was stable, nothing appearing, etc. She wanted to stay strong and healthy in case the enemy (tumor) did come back, a strong fighter, rather than weakened by too much chemicals. So I'm hanging in there--good and bad days--but praising God that I can still walk and talk with my family.
Hugs
Terri
dx 11/04

Debbie

Aug 12th, 2006 - 9:56 AM

Re: I am so sad today

Terri, you are wonderful. THank you so much. Its so hard sometimes to keep my head up.

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Phil from NJ Aug 9, 06 - 10:06 AM	Re: I am so sad today Who did you see at UPenn? I am getting treatment there, too. In Feb '06 I was diangosed and had to have surgery right away. My local physician recommended either Sloan-Kettering or UPenn; however, I was told Sloan won't take you unless they have a biopsy since they only take cancer patients (at that time I just had two brain tumors which they suspected were GBM due to the size). We decided on Penn because they have one of the best surgical departments, and also the Brain Tumor Board, so if it turned out it was cancer, I would at least have some continuity. It turned out one tumor was a grade 3 Ogliodendroma, and the larger one was GBM. After shopping around (I got 2nd and 3rd opinions from Sloan and from Colombia), we stayed with Penn and signed up for their Phase 2 trial (it's this stuff called Poly-ICLC, in conjunction with the "standard care" of Temodar and radiation). I've had two post-radiation MRIs that have been clear, and I'm relatively happy with the care I've gotten there. I know how you feel - I'd rather have cancer anywhere but my brain. Here's an excerpt from a recent update I sent to friends - I'm sure you have felt many of the same things: " The news so far is good; I had my second "checkup" MRI on Friday (I have them every 9 weeks) and it showed no regrowth of the tumors thus far. Unfortunately, cancer can come back at pretty much any time, and in the case of glioblastoma multiforme, it almost always does. So although I feel dread before each MRI, and relief after the two times so far it has come back clear, I just feel as though there will never be a time when I can just sit back and say "I beat it." I can just kinda hope I'm in the very few percent that make long-term survival (5 or more years). Back in March, April and May I went through radiation treatment. It was 5 days a week for 7 weeks. I rode my bike to the hospital for it every day in an effort to stay active. It was awkward at first; there's an interior waiting room you go into that only patients are allowed to enter. It is an uncomfortable thing, sitting in a room full of people who, like you, have cancer. The room was always strangely quiet; everyone knew why everyone else was there, but never talked about it. I felt really out of place - I'm 27, and the youngest person I saw after me was at least 50. It's kind of screwed up, but seeing those people made me really jealous. First, they were old, and had experienced many years of life, had maybe got married, had children or grandchildren, before this happened to them. Second, I knew some of them had colon, or breast, or some other type of cancer - if push came to shove, they could have the part removed, or maybe get a transplant. Although that sort of thing would be a terrible experience that would be difficult to bear, it might be an option in some cases. In mine, I knew if things get very bad, they can't remove or replace my brain; I'm trapped. The actual experience with radiation wasn't so bad. They strap you down to a table and get a soft fiber mesh wet with hot water, and mold it over your body part that is being irradiated (in my case it was my face and was pretty claustrophobic). Then they let it dry into a hard face-shaped mesh, and mark it all over with a sharpie so they could align the radiation beams. Every time I came in after that, they use the same mask, pull it tight over my face and snap it into place behind my head to immobilize it. I was laying on my back on a table in front of a machine that I can only say looked like a teleporter from Star Trek, with an arm that extended out. They swapped lead plates in and out between each blast (in my case, they went in with four different beams, so it was 4 blasts) to shape the beam accordingly and give it the correct angle. They'd leave the room and run a program for each bit. The process was painless, but there definitely was some weird shit going on. One of the beams always made the hair on my left arm stand up; another beam always made me see flashes of blue light with my eyes closed; one made me smell burning hair or something like that. It was strange, but beginning to end only took about 10 minutes. After about 3 weeks my hair started falling out - I could pull handfuls out. So I just started shaving my head. During the radiation I took a low dose of chemo 7 days a week. Overall, I'm glad the radiation is over; once you do it, you've gotten your maximum lifetime dose of radiation for that spot. So even if the cancer comes back, doing radiation again isn't an option. So right now I'm sort of living life 9 weeks at a time - I take a high dose of chemotherapy the first 5 days of every 9 weeks and I get pretty sick. Then for the rest of the 9 weeks I give myself intramuscular injections of this clinical trial drug 3 times a week. It sucks, but then again it seems to be helping so far. But it could be worse - the chemo I am on is administered orally as a pill, and makes me much less sick than the IV chemo drugs that are more common. Pretty much as long as there is no change and the tumors don't start coming back, the regimen doesn't change, because that means it is working. After a year of chemotherapy, if things look stable, they might try taking me off, but that sort of thing is at the doctor's discretion, and doctors don't like to talk about "what ifs" very much. If an MRI comes back showing a regrowth, they will take me off this chemotherapy drug and the clinical trial. They'll likely look at surgery as a first option and eventually switch to another chemotherapy drug. Seeing as the first surgery was easily the most frightening and painful thing I've ever experienced, I'm not exactly looking forward to any more of them. I stopped shaving my head about a month ago, since I had to do it every day to keep it looking even - the hair fell out in patches, where the beams went in, and real, normal hair, no matter how short you cut it, looks different than places where you are Jean-Luc Picard bald and have no follicles. My hair is starting to come back in all patchy, so now I looked kind of like a retarded skunk or something. It'll be a few months before I can get a full head of hair again (there's a chance some of the hairloss is permanent, but I hope that isn't the case). Plus the chemo makes the hair growth slower. I'm not working full time, but I am still in grad school and work about 25 hours a week or so. They give me enough to keep me happy and busy, but not so much that I get overwhelmed. Things are pretty good these days. I get to work at a comfortable pace and stay active. I spend a lot of time with Judy, just hanging out and having a good time. I'm planning on some travel in the next few months to see some friends and family. Mostly I just take it easy and do what I want to do, which is pretty nice. Best, Phil " So although sometimes things look hopeless, there is SOME chance you will survive. Think about it - this is your LIFE - there is nothing more precious. As long as there is any chance whatsoever I can survive, I will wait it out and see. I think of the cancer experience much less of a "fight" as people put it, and more of a trial of endurance. As bad as things can feel on some days (and it is natural to feel down sometimes), there will also be good days, and those are what we live for.
Debbie Aug 10th, 2006 - 9:37 AM	Re: I am so sad today I saw Dr. Rosenfeld. Unfortunately, I wasn't eligible for the Poly trial, since I'd already had rad/chemo. Really disappointed about that. I'm afraid; I wish I could start w/ a combo, rather then just TEmodar.
Michele Aug 10th, 2006 - 4:12 PM	Re: I am so sad today When my dad had his surgery the doctor told us that due to his age and that it was a golf ball sized GBM, many surgeons would have just closed him up and told him to go home and get his affairs in order. Today is the 6 month anniversary of his surgery and he is doing wonderfully. He hasn't had an MRI yet and I think this is due to his age; he's 70. We don't know if the tumor is coming back or growing, but I know that he is enjoying his life, spending time with his family, traveling a little and except for moving a little slower and napping, seems like his old self. While my dad has gotten great treatment, RT and Temodar, I think that because of his age, his doctors don't have the same sense of urgency that a younger patient might generate. This is the only treatment he'll get, no trials for someone his age. Also, another surgery is probably not an option should his tumor reoccur. I love that my dad hasn't given up and he doesn't seem to have a minute when he believes that he can't beat this. I've recently read very encouraging statistics on the RT/Temodar treatment prior to reoccurance. Please stay positive, you all provide such encouragement to so many. Email: Gleathead1@bellsouth.net
Debbie Aug 10th, 2006 - 4:24 PM	Re: I am so sad today I try to keep my head up; every day I can get up and open my eyes is a good day. It's just, this is a horrible dx to live with....day after day. But, we'll all get through
Terri Aug 11th, 2006 - 1:04 PM	Re: I am so sad today Debbie, Some days are just really hard. We feel lousy. We use our box of tissues. And we are scared that the tumor is growing or coming back. That is alot for one person to deal with. We're here to listen any time even though probably a distance away in person our hearts are right next to you. I went very much into the "deep end" and am now taking Zoloft (antidepressant). It seems to be helping me. Depression can be a chemical imbalance just because our heads were cut open. I was on Temodar 5/28 for 6 months. I thought I would be on it 12-24 months. My doc wanted me off because everything in my head was stable, nothing appearing, etc. She wanted to stay strong and healthy in case the enemy (tumor) did come back, a strong fighter, rather than weakened by too much chemicals. So I'm hanging in there--good and bad days--but praising God that I can still walk and talk with my family. Hugs Terri dx 11/04 Email: tlhpedspt@verizon.net
Debbie Aug 12th, 2006 - 9:56 AM	Re: I am so sad today Terri, you are wonderful. THank you so much. Its so hard sometimes to keep my head up.