Belated reporting of last checkup

Where has the time gone?  Children are back in school, my band (a time-consuming project) has been rehearsing for a brief European tour of sorts, and my job remains a demanding one.  Life is busy!

I had a good checkup in Arkansas.  I remain in complete remission.  But it wasn't a perfect one.

First, there was a brief scare when my bone marrow biopsy came back with 13% plasma cells in the aspirate, 10% in the core.  Recall, gentle readers, that the core marrow is more important since that is where new cells are being generated.

At any rate, such a level of plasma cells was deemed "abnormal plasmacytosis" on my chart, with several studies still ongoing.  The core was negative for myeloma, so that much was good...but I didn't like the number of plasma cells.

I was pretty unnerved for about an hour until the physician's assistant CR came in and said it was likely high because I was recovering from a cold.  He had a cold himself, and suggested that his plasma cells were probably 30% right now.  Even as I exhaled, my mind went back to a conversation with Kathy Giusti from around my diagnosis where she had said that it's a bad idea to have a blood test, even, when you have a cold since immunoglobins all shoot up at that time.  Well, the blood was negative for Myeloma, and it all looked good.  But I think there was some residual reaction from my immune system, hence the plasma cells.  In any case, no big deal.

I was somewhat saddened, though, to look at the MRI and see that the last four little lesions in my spine are stable -- I was hoping they would fully resolve.  BB was somewhat perturbed by this same thing.  So he prescribed more Zometa.  I'll return in six months, and we'll see what things look like then.  In the meantime, I'll continue to get my cancer markers every two weeks from the lab out here.  I anticipate there'll be nothing of note.

Twelve more months of maintenance, hopefully, and then we'll see how to transition off drugs and what my immune system looks like.  Will I be on Acyclovir for the rest of my life?  Will I need to be reimmunized?  Can I expect my immune system to recover and behave normally?  Interesting and important questions for a Myeloma patient.

There's more to report but work calls...so I'll fill you in on the other stuff in the days ahead.

A very cool dialogue with an online MM presence treated very differently than I...

Hello folks.  I will shortly be giving you an update on my visit to Arkansas last week (which was good, still in complete remission, a couple of mildly unsettling things to report but nothing major).

But I didn't want to forget about a very pleasant conversation I had in the guise of a focus group on bone issues and bisphosphonate treatment.  Sponsored by the manufacturers of Zometa, I've done one of these before in a larger group and they essentially ask for patients' opinions of how MM patients learn of bone problems, if they have a good understanding of them, how they are treated, etc.  I'm appreciative of the opportunity to contribute to consumer research that will help these companies improve the efficacy of treatment.  I certainly think that had the medical community -- and I include in this some generally good doctors that I saw before BB -- had a better idea of this, I'd not have had the broken back that I ended up with in Arkansas.

Anyhow, what set this apart was not so much the questions but the other person doing the answering.  As he is about as public as I am in the MM "blogosphere" I doubt he will mind that I mention his name: David Emerson.  I remember reading some of David's posts on Myeloma on various Internet message boards when I was evaluating treatment.  David seemed very knowledgeable, and if I recall correctly was well aware of BB's methods, which I believe he was fairly even-handed about.  I remember David being a fan of alternative medicine.  I've joked before that the three approaches to treatment are: cure, control and curcumin!   But after speaking with David, my sense is that he believes certain things (eating well, exercise, curcumin as appropriate) are good things to do regardless, and in this I fully agree although outside of Indian food (which I love) I don't take much of the orange spice.

David and I had a remarkably interesting exchange, and shared most of the same opinions on bisphosphonate treatment (essentially: it's important, and people don't know or care that much about it or its side effects because Myeloma gives you much bigger fish to fry).  David and I also both, I think, believe we are effectively cured (or in my case, close to the end of the treatment tunnel).  But we couldn't have arrived there more differently.   David was treated by Dr. Stanislaw Burzynski at his clinic, with antineoplaston therapy.   He's lived quite some time without any disease recurrence -- I think if BB looked at some blood work and marrow and it was negative, he'd probably pronounce David cured.

Burzynski is the subject of an interesting documentary which essentially claims that he has been smeared by the government and the American Cancer Society with the intent of covering up the success of antineoplaston therapy.  I'll spare you the counterarguments.  Let's suffice it to say that this is EXTREMELY controversial -- much more so than BB.

I thought it was very interesting that people coming from completely opposite positions on MM treatment found common ground and had a delightful conversation.  Wouldn't it be nice if we could make that happen in politics?  :)

I'm a pragmatist.  I'm much more likely to be cured of cancer than that is likely to happen.  :)

Dosing to keep the ol' GI tract working...

After last week's disaster, I figured I must be doing it wrong.

I looked at my bottle of Reglan (so funny that I thought it was Ragalin, most likely because of the folksy pronunciation in Arkansas!) and checked the dosing instruction.  It was carried over from when it was prescribed to me as anti-nausea (probably coming out of a bone marrow or something with anesthesia) where it said to take one pill the night before "your procedure" and another the next day.

Because of this imprecise instruction, and based on the suggestion of JA, one of the physician assistants, I had taken one on Tuesday evenings (with my dex) and one the next morning, and one the next night.

This approach failed miserably last week.

So I use the Google Machine on the Interwebs and found that when prescribed for gastroparesis (med-speak for "gut shuts down") one takes one pill 30 minutes before each meal, then again at bedtime.

I tried that approach this week, and it seemed to work better than last week, certainly. 

In other news, fraternizing with the children of other parents for a few days in a family resort has led to me getting sick.   No big surprise there.   I am hoping I caught it early enough and started taking Tamiflu in time to cut off bronchitis.  So far, day three of sickness, just a tiny dry cough to go with the nasal stuffiness, swollen glands and sore throat.   Time will tell.

There is a silver lining, though: proof positive that I must continue my policy of avoiding the enormous fair at my daughter's school!