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Long tail

I had an MRI and visit with my new neuro-oncologist yesterday. The MRI once again revealed that the tumor hasn't returned yet. My conversation with Dr. Taylor was an eye-opener to such an extent that I decided to sleep on it before sharing it with anyone other than my family and housemate.

I had some questions about survival rates, and in the course of asking I rehearsed the survival stats I was given in the beginning: an average of twelve months for people who don't take treatment, fourteen months for those who do, thirty percent survive at least three years, and only ten percent survive at least five.

"That sounds like the statistics for the whole population of people with glioblastoma," Dr Taylor said. "You need to look at the statistics for those like you who have the IDH1 mutation." She said they are now seeing that the IDH1 mutation makes a pretty significant difference in survival rates and that between having the mutation, the methylated MGMT gene (which is apparently highly correlated with having the mutation), being relatively young (under 60), having gotten most of the tumor out surgically (achieving 95% resection of the tumor is apparently more common in people with the mutation, and Dr Silbergeld seemed very confident that he had gotten as much of the tumor as humanly possible), and having survived the surgery in very good health, both physically and cognitively, she thought it was likely that my survival time would be on the long tail.

I don't know what that means exactly. I'd say it's still likely that the cancer will eventually kill me, but this still feels like a reprieve. My radiation oncologist, Dr. Halasz, was willing to say that all my favorable factors would likely put me in the 10% who live at least five years, but Dr. Taylor is saying something significantly different, to my ears. But what, exactly? That I have a strong chance of living for quite a while with this beast? I told her that my mom would be insufferable, because she's been saying this all along. I was going to be that guy who survived for twenty years and died of a heart attack, not cancer. I kept telling her she was in denial (at least in my internal dialogue with her), but maybe her optimism was correct all along. She's certainly feeling pretty smart right now.

"How was she able to understand?" Dr Taylor asked.

"She was a transcriptionist in a Pathology lab for a number of years."

"Ah, so she can actually read the lingo."

"Better than I can anyway."

The article about the mutation that I linked to echoes some of the stuff that Dr. Taylor told me while amplifying other things. They now think that the mutation occurs in some people when a lower grade glio moves up a notch. It also sounds as though one of the main helpful features, which is how I understood the positives of the methylated MGMT gene too, is that it works well with radiation and chemo to improve the body's ability to kill cancer cells. One section of the article talks about a study in which "the median survival in the IDH-mutant group was 163.4 months (13.6 years)". That was for one subgroup in the study. For another subgroup with the mutation the study showed a median survival rate of "118.7 months (9.9 years)." I can't say that I follow much of the technical discussion distinguishing the two subgroups, but either of those medians is far better than any median survival I've run into before. Of course this was one study of about three hundred people with GBM, 113 with the mutation, 222 without.

The article also says treatments are being developed to specifically target GBM patients who have the mutation. Again, the discussion is too technical for me to follow, but it all sounds pretty hopeful, which I assume is why Dr. Taylor was willing to be so optimistic right to my face. I feel torn between wild optimism on my own part and cautious skepticism. No doubt I'll need to read and discuss it further, but damn if I didn't immediately start thinking, "Maybe I *will* get to see Celine grow up!"

In other news, I started round eleven of chemo last night. Only one more after this one. I'm excited that chemo will soon be done, so I'm just feeling giddy in general today.



( 26 comments — Leave a comment )
Jan. 26th, 2017 05:07 pm (UTC)
I'm still brought to tears of joy as I read this. You could be the one. Time to make another happy dance. Love this news and you little brother. LaVelle
PS....Don't plan on getting those pennies back. 😍
Jan. 26th, 2017 05:08 pm (UTC)
Believe me, I'm happy to be rid of them! And that they make somebody else so happy!
Jan. 26th, 2017 05:48 pm (UTC)
Hot damn.
Jan. 26th, 2017 06:03 pm (UTC)
Well, this is fantastically positive news and I'm pleased for you and your loved ones. One does have to be careful or deploy the emotional intelligence I expect but, well I'm obviously pleased for you.
Jan. 26th, 2017 06:09 pm (UTC)
Thanks, James. It helps that my mom, who is a layman, was able to discern all this from her own reading on the subject, so while I need to be careful not to get too far ahead of myself, for the moment I think this is worth celebrating. But as people have been reminding me all along, "You could be hit by a beer truck tomorrow." Only if Tobes were driving! Or maybe Sandra Bond.
Jan. 27th, 2017 08:57 am (UTC)
I have yet to encounter Tobes driving. This is something that warrants investigation. Good on your Mom!
Jan. 27th, 2017 03:05 pm (UTC)
Tobes is clearly too smart to get into any car that he's going to be driving.

Edited at 2017-01-27 08:27 pm (UTC)
Jan. 26th, 2017 07:31 pm (UTC)

Wow what wonderful news! So very happy for you and yours. I tell ya, mom's know what they're talking about :)

Jan. 26th, 2017 07:40 pm (UTC)
This is great news. Hope to see you down here on the desert some time!
Jan. 26th, 2017 07:56 pm (UTC)
Fucking hell, Randy, that's great news! Okay, sure, skepticism is always in order; but so is celebration. This sounds so much better than anybody's expectations! You mean we might have you to kick around for a while longer? Good!

Jan. 26th, 2017 07:57 pm (UTC)
Re: Future-proof
Oops. Since I'm not registered on LiveJournal, I should say that 'John' in this case is John D. Berry

Jan. 26th, 2017 08:46 pm (UTC)
Re: Future-proof
Yeah, I'd be happy to be kicked to the curb a few more times if I got a few more years out of it.
Jan. 26th, 2017 08:26 pm (UTC)
Wow. So much positive potential in there; we're so pleased and will try to avoid referring to you in future as 'Randy of the long tail' - although that makes me wish I could draw. Hope the chemo isn't too bad this time and your enthusiasm continues.
Jan. 26th, 2017 08:48 pm (UTC)
I've been given a new approach to trying to stave off the nausea, so we'll see if it works. So far, so good, but it's early days yet.

Edited at 2017-01-26 08:48 pm (UTC)
Jan. 26th, 2017 08:45 pm (UTC)
This is so amazing Randy. Im too dazed to log in!!! Lilian x
Jan. 26th, 2017 08:52 pm (UTC)
What terrific news! I'm so pleased to hear that the expectations are so much more optimistic than before! Definitely something to celebrate.
Jan. 26th, 2017 11:00 pm (UTC)
I can't begin to tell you how much I love reading the research and hard numbers that go along with this remarkable news. Many thanks for the link! Yes, there was lots that was well over my head, and I've only tried reading a couple of the source documents listed at the end of the article, but the bottom line is that those median numbers are downright astonishing to my eyes. Yowser, GoshWow, and All That Jazz....

Runaway bheer trucks not withstanding, right now what I most love is the expanded sense of possibility the information brings. I don't mean to discount cautious skepticism, as I certainly share that with you, but, yeah, count me in the "trust all joy" camp, and the data contains much to be joyful about.

On the long tail front, you can be grateful that I'm broke and therefore not sending you the longest tail Anthrowear.com offers. (Actually, I like to think I'd have the good sense not to order it even if I weren't watching pennies and more so very closely. While you'd have the good grace to accept it in the spirit given, I strongly prefer the long tail accompanying your particular genetic mutatation to any the furries have come up with, and I'm confident you do, too!)

Hugs, love, and gleeful babbling....

Jan. 26th, 2017 11:07 pm (UTC)
I prefer the idea floated above of the Randy of the Long Tail cartoon. Less chance that I'd step on it.
Jan. 26th, 2017 11:13 pm (UTC)
Sounds like a win to me. All you'd have to do is post and frame it. No grooming required.

Then again, be careful what you wish for....
Jan. 26th, 2017 11:22 pm (UTC)
I'm so amazingly delighted to read this, Randy! I'm selfish enough to want you kicking around for a good long while yet. More chances to come up and hang out.
Jan. 27th, 2017 12:57 am (UTC)
I'd love to think of you sending us all email in 2027 saying, "Sorry, I aten't ded yet." AWESOME.
Jan. 27th, 2017 01:44 am (UTC)
That sounds like wonderful news. You don't know me at all, but I'm sending healthy and happy thoughts your way. Hugs too because I come from a family of huggers. :)
Jan. 27th, 2017 03:51 am (UTC)
How about that? I think the only thing to say is, what cheering and hopeful news.
Jan. 27th, 2017 06:16 pm (UTC)
I am so happy for you! I hope you beat ALL the odds.
Jan. 27th, 2017 11:06 pm (UTC)
That's good, but no slacking off! If the mutation helps the chemo be more effective, you still gotta do the fucking chemo.
Jan. 28th, 2017 04:19 am (UTC)
Yes, sir! I'll do the fucking chemo, sir!
( 26 comments — Leave a comment )

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