Thursday, July 27, 2006

7.27.06, Changed Treatment Plan Update

*N.B. I screwed up in the post yesterday, on scheduling: I'm only doing the rest of the current GTX cycle and then switching to T-GX immediately after that. There might be something to gain, nothing to lose.

* Also, note that I forgot the article title last time, see below for it. -Mr. J

Franky Scale: 5. It’s nausea day. We celebrate it once a week at least. Not much more worth saying about that. Carlos Fuentes is a great help; I’m almost depressed that I never started reading him until now. Alas.

I was reading some new pamphlets and booklets from PanCan today (Pancreatic Cancer Action Network, Nat’l HQ, 2141 Rosecrans Ave, STE 7000, El Segundo, CA 90245; 800.272.6226; Fax 310.725.0029 — their website has been added to links, up top, right). (Notice they practically stole my cat’s name for their street!) “Get more rest,” the little guidebooks remind me, so now I can eliminate some of my daytime guilt if I sleep, or the late morning guilt after sleeping in. Still, nights are not smooth and without transition, they’re broken up and start late these days so sleeping in seems more acceptable.

My treatment plan is changing, a bit ahead of schedule. The change in schedule is due to possible benefits, not to negative disease progress. I wanted to lay out what’s coming up by way of changes. For those who pay close attention you’ll recall the overview of what-next treatment plan ideas from the restaging, at which Dr. Whiting and I discussed

— Change the order of the drugs G, T, and X.

— Try new drugs: The total number of drugs for pancreatic cancer is limited, and once I use one, it’s effectively exhausted. Like a little store of silver bullets — we just don’t know which, if any, are really made of silver . . . Tom Wait's and Wm Burroughs . . . The Black Rider.

— Clinical trials: I believe there are 171 clinical trials I could be part of (thanks to the Disenchanted Princess Information Service), though Whiting has one in mind, one I have paperwork for. More on that when it’s time.

These are all options, and we were going to do the remainder of the present three weeks (one cycle) of GTX chemo, restage after the T-GX cycle of four weeks, and go from there. Now, the plan has shifted based on some checking Whiting did with Dr. Fine, the GTX guy in NY. It turns out the results currently seen from changing the GTX order to T-GX have been encouraging — i.e., increased longevity (we’re not working with an increase of years here, by the way, but maybe weeks, maybe a bit more). Accordingly, we’re off to chase that dragon. After this cycle of the GTX regimen, which finishes in two weeks (one more of drugs with an IV session included and then one week to recover), we will switch to T-GX and cross some fingers. It’s not experimental, but it is a relatively new technique and there is little published data on results. That’s why Whiting wanted to contact Fine before this decision.

For the anal and / or the science-oriented, here are some sources and links you can follow to familiarize yourself with the studies:

Citation: "Effective Salvage Therapy (T-GX) for Pancreatic Cancer Patients after Treatment with GTX." Journal of Clinical Oncology, 2004 ASCO Annual Meeting Proceedings (Post-Meeting Edition). Vol. 22, No. 14S (July 15 Supplement), 2004: 4268.

Author(s): D. R. Fogelman, S. Schreibman, R. L. Fine; Columbia University Medical Center, New York, NY; Morristown Memorial Hospital, Morristown, NJ

Link w/ Summary Presentation: (click, or cut and paste in your browser; this is good)

* If anyone wants more technical info like that above, please email or send a comment to the blog saying so; I have lots more, I just never know who might want what. … desire being so difficult to plumb. ☺ *

Finally, to Spacely, et al.: If you are serious about trying to introduce me to “alternative” approaches for treatment, as I said before, you need to do some homework and send me information and research on whatever it is. I can do the research if you can’t, although getting results up front would help. Either way send email, articles, URL’s, links, whatever you can. Problem is, if I have no research, no info, nothing to go on, then I’m not going to stick whatever it is in my body and especially am not going to forego working with a known-quantity — that is, chemotherapy. Once I stop that, I die, and soon. Under my current treatment the cancer is being held in check to some degree, I’m buying a little time with every side-effect. The cold economy of death by cancer. Big point being that any viable alternatives can’t be sketchy.


Slarry said...

Hey Spot:

What an informative post. I’ll have to reread it several times to get the

So, I’m assuming THE SNAKE JUICE cocktail cure for cancer is out? : )
This is not to say that one shouldn’t be open to alternative medication---
but I would stay away from anything reptilian, snake like and even turtle soup.

Seriously, the pan can sight looks interesting. And thank you Princess for your thoughtful and helpful research.
I’m feeling a BIG dose of hope slipping in. I love HOPE.

Spot, sorry about the nausea--- it bugs me when you get the Thursday Night
Nausea post IV Infusion. As always, I wish there was more I could do.

Where have you been anyway? I will try and find you.
Love you brother. I like the idea of changing the order of your medications.
With some of my client’s-- we refer to it as trying to TRICK the cancer
especially if it starts to recognize the routine. I have no idea if that
makes any sense. But yes, lets chase that dragon and beat the pooh
out of it.
I ‘m excited about Dr. Fine and Whiting talking and working together.
Very cool in deed.
Ok, I’m off to sell the house. It will still be clean, unchanged and the same for your visit to SLC and the red rocks.
For my friends who have been so supportive, especially
lately, offering such kind words, wisdom and being incredible listners-- for "getting it"-- thank you so very much. And keep the stories coming. My favorite thus far: We are golfers NOT Fishers. I love Blog code.

Much love and decreased nausea--- Hi to Gill, Frankly and dzd. We love you.


tossing salads said...

excited and hopeful about the new routine. i love you. my thoughts are never far from you.

Anonymous said...

Hi, Scott aka Mr. Jones-

One of your students from your nameless Seattle university here. I was thinking about you and wondering how you were doing, and just discovered your blog yesterday. The blog is wonderful- heartbreaking at times, funny at times, and full of your insight. Of course, it would be a lot more fun to read if it wasn't about you. Better if it was some stranger on the internet, someone I hadn't taken for granted would be my teacher and mentor for years to come. I thought I would take many more of your classes and would get to know you better, assuming I would have a lot of time to do that.

But it's not over till it's over, and you're doing good work now. The work may not be part of the original plan but it's good. Your words are valuable and you're reminding people to do less taking for granted and do more doing and living.

I hope that of the 171 clinical trials you could take part in one of them has some good results for you. No matter how much time you have left, please keep fighting for your family and friends (and yourself, or course), and keep doing your work as long as you can. You mentioned in one post that very few people have their work live on forever, though many dream of it. That may be true, but I can't imagine that you would be easily forgotten. Even your students, who are involved in their own petty academic dramas and dreams of "success," think of you often.