Big Challenge: Nutshell Post (pretend it's Twitter? Ugh)

Inability to do short posts leads to doing no posts. So here goes:

Medical update: Everything still in limbo since the advent of my mysterious rash. Best guess, though no proof or any way to definitively know, is that it's an allergic reaction to Xeloda, a delayed allergic reaction due to my body just finally saying, "Enough already. Enough of this toxin. It may have gotten your tumor markers down from over 1000 to 200, but that took a year, and a year of subjecting your body to poison is not a great thing. Yes, this is a paradox. It is also the reality of what chemo does to us, even low dose chemo such as Xeloda."

Because of this reaction, I had to stop taking Xeloda, which meant that I also had to put my plans for implementing the new immunotherapy, which was to have been done in conjunction with the Xeloda, on hold. That was five weeks ago. Nothing would make the rash go away, until I took the unwanted but necessary step of taking prednisone, which I now better understand can only be a very short-term solution, because prednisone taken for longer than a couple of weeks is fraught with bad side-effects, including atrophy of your adrenal glands. Even after being on it for only two weeks, the process of getting off of it is laborious. Let me show you a recent email exchange with one of my doctors, who will remain anonymous, of course (and so much for nutshell posts):

Me: Hi Dr. Anon,

"I finished my one-week round of prednisone on Tuesday (5 milligram pills, going down one per day, 8,7, 6, 5 etc. to zero). Also just finished the second tube of Clobetasol 0.05% (used it up in one week, though it's supposed to last for a month).

Dr. Anon. #2, when I told him this morning that I still have a substantial rash (oldest parts of the rash are improved; newer parts are still more active/popping out) and that I'm starting to itch again, quite a bit, after only one day off of the prednisone...said he thinks I should take one more week of prednisone at 20 mg a day, no tapering down this time. And another tube of Clobetasol.

I left a message at Dr. Anon. #3's office this morning, telling him what Dr. Anon. #2 said. Am assuming he'll defer to Dr. Anon #2 unless he says otherwise.

I'm also supposed to call Dr. Anon. #3 tomorrow, to decide about whether to start the Interleukin 2 on Monday. He seemed to think, when we spoke this past Monday, that I should start it even if the rash hasn't disappeared. I have my doubts about doing that. I fear it could exacerbate the rash big-time..."

Dr. Anon. #1:

That's a good sign, that facets of the rash are resolving, though some new ones are still appearing - all of which, I agree, supports staying with the prednisone (don't be surprised if it may be needed even longer than a week). I still have doubt as to whether this is solely the Xeloda - one would imagine as you get greater temporal distance from it that the rashes would stop appearing. Let's hope so.

When it comes time to taper off the prednisone, keep in mind that anyone on more than 10mg or so for longer than 2 weeks will likely have already developed some adrenal gland atrophy, and require tapering off the prednisone more slowly (over a couple of weeks, particularly when you get down below 5mg/day - going below that, for some people, requires not dropping more than 1 or 2 mg every 3 or so days, eventually getting to 1 mg every other day, before finally coming off. Acupuncture and various Chinese herbs (licorice extracts) can be helpful in getting off prednisone.

As to the IL-2, I still would warn against starting it until the rash is clearly under the control, and there are NO new lesions. IL-2 is a non-specific stimulator of immune response, and it could jack your skin reactions! Also, the IL-2/CRA type of Recchia protocol is NOT about actively treating or reducing the cancer, as, say with a chemo, but rather to try to correct the underlying immune disorder that allowed the cancer to grow and progress to begin with, as well as to "bend the survival curve," as those cancer immunotherapists put it.

. . . it doesn't make a lot of sense to be using IL-2 or ANY kind of immunotherapy when you are on relatively high dose prednisone, which will tend to negate such immunotherapeutic intentions! (Would need to get down below 5-8 mg of prednisone).

Keep me posted,

Dr. Anon #1

I could say more, project into the future, speculate as to what will happen next, but I am tired of this post. It's already gone from nutshell to a whole nut to a whole bushel of nuts. So that's enough for now. To write any more would further negate my attempt to have good quality of life today. I can only stand so much.

Posted at 06:19 AM | Permalink

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Thanks for filling us in.....I know it takes a lot of energy in more ways than one. Whole bushels of nuts can be pretty damn heavy.....I'll be concentrating on some healing vibes to come your way. I think about you all the time. Love you.

Posted by: Jill | Friday, August 31, 2012 at 09:49 AM