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Thinking about it

Although I like to analyze things and learn how they work, I confess that I haven't yet dug very deeply into the nature of glioblastoma multiforme. However, I did some reading recently that raised questions that I wanted to ask my radiation oncologist, Dr Halasz, and her nurse, Gaia (who endeared herself to me by suggesting that I ask the radiation techs to play David Bowie songs during treatments), and when I saw the two of them today on my weekly consultation following a radiation session I asked them the questions. (By the way, both radiation and chemo are going fine so far, although I've only had three radiation treatments and two doses of chemo. The radiation makes me feel a little woozy in the immediate aftermath, but nothing horrible yet, and the chemo has not caused any nausea yet, which apparently means it's unlikely to ever cause any nausea. Hurrah!)

First of all I asked whether it was true, as I have read, that remission isn't possible for Grade IV glioblastomas. Gaia and Dr Halasz both confirmed this, but Dr Halasz said something that I hadn't really understood previously. She said that the goal of this first year of treatment -- which is six weeks of radiation+chemo, four weeks of recovery, and then the rest of the year another course of chemo that's only five days a month -- is that when we get to the end of it the cancer will have been beaten back enough that I won't need further treatment until the cancer comes back aggressively again. In other words, the goal is that after a year I'll be able to take a break from treatment for as long as the cancer isn't threatening my life. It did sound as though it was very likely that there'd have to be treatment again at some point in the future, because the cancer will never really go away (i.e. remission), but I hadn't realized that the hope was a break from treatment. I found that very encouraging.

I also asked her whether the survival statistics they gave us included people who weren't able to be treated for whatever reason. She said the twelve month average that Courtney gave us included people who didn't undergo treatment, and that the average for people who do get treatment is fourteen months. While she was still wary about trying to give me a definite number for my particular case, she was a little more forthcoming on what the statistics might mean for me. For example, she said that the statistics for this cancer are not a true Bell curve, and that the range of longer survivals is what she called a long tail. In other words, it includes people who survive for a very long time, like that guy they told us about on the 16th who lived for 22 years, and it's impossible to know where I will fall on that long tail if I beat the average survival rate. I also thought she said she was optimistic about my chances of being amongst the 10% who survive for at least five years (30% survive at least three). She said the three things I have in my favor are: 1) good baseline health, 2) age (I'm at the young end of the range for people suffering from glioblastoma), and 3) methylation of the MGMT gene (which is something that means my body won't resist the chemo's attempt to disrupt the replication of the cancer cells). If I understood her correctly, she felt those factors were very positive for me to do better than most with the cancer. I also found that incredibly encouraging.

None of this is a guarantee, of course, and she stressed that too. However, I came away from today's conversation feeling much better about my chances than I had been in recent weeks. Even when I was told that my MGMT gene was methylated, the nurse told me it would probably mean a difference of months, not years, in my survival time. I'm not sure why Dr Halasz seemed so much more positive this time, but possibly it's because of how I've reacted to the radiation + chemo so far, or maybe she's just getting a better feel for me personally and a better idea of where I stand in comparison to other patients she's treated. Now I need to make sure I don't take this as a promise of what's to come. We still have no idea, but perhaps a little optimism is not out of place. I live in hope. and perhaps with a slightly better understanding of where things are headed. It's not in the opposite direction from cancer, but as my sister said, maybe it's more like where you can get with diabetes: it's never cured, but it can be managed and lived with, at least for a time.

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( 26 comments — Leave a comment )
holyoutlaw
Jan. 15th, 2016 05:49 am (UTC)
That would be nice. This is good news, well put.

I'll do all the unrealistic over-optimistic starry-eyed hopefulness for both of us. ;>
randy_byers
Jan. 15th, 2016 06:11 am (UTC)
Fair enough! But I don't want anyone to feel disappointed or crushed if I don't make the 10% cut. That's pretty rare company, after all.
holyoutlaw
Jan. 15th, 2016 06:17 am (UTC)
Gotchya. Whatever happens will happen, and we can enjoy it while we're here and treasure the memories.
randy_byers
Jan. 15th, 2016 04:11 pm (UTC)
That's the attitude! Remember the ReBar!
(Anonymous)
Jan. 15th, 2016 04:49 pm (UTC)
As long as I can!
holyoutlaw
Jan. 15th, 2016 06:48 pm (UTC)
That was me, not logged in on my phone. But you prolly knew that.
randy_byers
Jan. 15th, 2016 06:57 pm (UTC)
Yes, I saw right through the Anonymous to your ever-loving face.
holyoutlaw
Jan. 15th, 2016 07:00 pm (UTC)
*blush*

Do you remember a few years ago (um... maybe several by now) talking about "Stay Human" by Spearhead and I said how much I disliked it because of the radio skits? And you said you'd taken out the radio skits and it was actually a good record, and made me a copy, and indeed it is! This comes to mind because I found it on a shelf and just recopied it to my computer.

So, thanks again for the long-ago gift.
randy_byers
Jan. 15th, 2016 07:02 pm (UTC)
Sure thing. It's actually been a while since I've listened to that myself, so I should give the edited version another spin.
randy_byers
Jan. 15th, 2016 07:04 pm (UTC)
I remember especially liking the song with the lyric, "Every single soul is a poem/It's written on the back of God's hand."
holyoutlaw
Jan. 15th, 2016 07:05 pm (UTC)
Yes, that stands out in memory as well.
don_fitch
Jan. 15th, 2016 09:16 am (UTC)
I'll be unhappy, of course, if you don't make the cut. But still... you have the great Blessing of having people who can (and will) say "Pull the plug" when it's time to do that. And who have the courage and love needed to pull it themselves if that's necessary.
randy_byers
Jan. 15th, 2016 04:12 pm (UTC)
One of the really nice things about by treatment team is that they are very focused on quality of life. They don't just talk about preserving my life, they talk about preserving my quality of life. That's the focus at this point, and I think it's the right focus.

Edited at 2016-01-15 04:15 pm (UTC)
gerisullivan
Jan. 15th, 2016 06:47 pm (UTC)
I like your treatment team!

Quality of life is the biggie to me. It's not that it has to be perfect; heck, mine has been far from perfect for decades. But it's got to be acceptable. Exactly what "acceptable" is varies from person to person and within each of us over time.

The treatment is most intense right at the start. While the effects do build over time, once you get through the initial treatment and recovery time, the 5 days/month chemo stands a good chance of giving you a lot more freedom to travel and do other things you enjoy than you have right now.
randy_byers
Jan. 15th, 2016 07:00 pm (UTC)
We talked about that a little bit, because amongst other things I'd like to make it back out to Yap before it's (possibly) too late. During the next phase of the chemo, they'll want to do blood draws every couple of weeks and the occasional MRI scan as well, so traveling might be a little iffy, although short trips should be possible. If I can get to a point where I'm not being treated, however, I should have a little more freedom, although they'll still want to keep an eye out for possible return of the cancer in an aggressive mood.
bohemiancoast
Jan. 15th, 2016 10:35 am (UTC)
Two things -- when Stephen Jay Gould got mesothelioma, he went through the exact same process you describe above -- and his essay is available online here.

https://people.umass.edu/biep540w/pdf/Stephen%20Jay%20Gould.pdf

The second thing is that the author John Grisham is a patron of the Focused Ultrasound Association, and wrote a short, free, book about focused ultrasound -- http://www.fusfoundation.org/read-the-tumor-by-john-grisham . I found this pretty fucking depressing and you may well too, but if you're in the "ok so what might happen if I can get myself into the long tail?", there's that.

I'm glad to hear that you're continuing to tolerate the treatment really well; that's a really good thing.
randy_byers
Jan. 15th, 2016 04:15 pm (UTC)
Atul Gawande talks about the Gould essay in Being Mortal, although I don't remember the gist of the discussion at this point. I also didn't know the essay was online, so thanks for that. We'll see if I can work up the nerve to look at the Grisham. So far I've been taking it very slow in trying to digest the implications of what's happening to me. I hope I'm not just being a chicken and am taking things in at a rate I can handle.
bohemiancoast
Jan. 15th, 2016 05:12 pm (UTC)
I'm sorry for any suggestion on my part that you should "be braver" or anything like that. You seem remarkably cheerful and clear-headed to me, and I get that that's an online thing.
randy_byers
Jan. 15th, 2016 05:46 pm (UTC)
No worries whatsoever. I appreciate the pointer, and I guess all I was saying is that I'll get to it when/if I get to it. I'm sure that's not exactly surprising.
voidampersand
Jan. 15th, 2016 02:24 pm (UTC)
You've always been an outlier. Keep it up!
randy_byers
Jan. 15th, 2016 04:15 pm (UTC)
And here I thought I was an outrigger!

Edited at 2016-01-15 04:15 pm (UTC)
surliminal
Jan. 15th, 2016 05:46 pm (UTC)
I'm glad to hear all that sanely hopeful stuff.
randy_byers
Jan. 15th, 2016 06:12 pm (UTC)
It was very comforting, even if I'm trying not to maintain a balanced view of the possibilities. It could be that we won't even reach the goal for the first year of treatment, but maybe my chances of reaching it are actually better than most.
surliminal
Jan. 15th, 2016 07:42 pm (UTC)
It does objectively sound like it, from here.
tand_mark
Jan. 15th, 2016 06:08 pm (UTC)
One benefit of it being likely that you'll be on the long 3+ or 5+ year tail of the curve is that researchers' attempts to get a grasp on the underlying biology of GBM have made a couple promising breakthroughs just this month, one by Inder Varma's team at the Salk Institute and the other by Nhan Tran's team at the Translational Genomics Research Institute. It's still early days, of course, but AFAIK, these are the first such reports in recent memory. I'm guardedly Pollyanna-ish about what I've read so far about them.
These two might well result in treatments that'll be ready for human trials in 3 to 5 years. Or perhaps they'll prove to be such fruitful lines of research that they'll even have produced new standard treatments by then.
It's kind of like if you keep playing the game for a reasonably long time, you can level up to where you get the really cool weapons.
randy_byers
Jan. 15th, 2016 06:15 pm (UTC)
That's one thing I didn't fit into my summary, but Dr Halasz did talk about the possibility that improved understanding/treatment could mean an even more positive outcome for me down the road, if I can survive long enough. Sounds very dramatic when you put it that way: a race against time!
( 26 comments — Leave a comment )

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