Tuesday, June 9, 2009

Another FNA? Effin' A!!

Howdy folks.

So, first of all, thanks especially to the people that urged me to buck up in response to my last post, which had a bit of woe-is-me in it. I appreciate you reminding me to stay positive and focused.

BB came in. I asked him if I was on track for remission, and he said he was "puzzled" by the "persistence of your M-protein." He also noted that "some people in low risk disease never achieve remission." I had to remind myself, I still have the tail of this transplant, plus consolidation therapy (dose-reduced VTD-PACE), plus three years of velcade, revlimid and dex. I'll get there. I'd just rather get there sooner than later. The sooner I get there, the more of this other therapy is used to keep making my body inhospitable for Myeloma, versus trying to get rid of what's already there.

He thought all my labs looked good, although now he's no longer joking about the liver numbers. They're still only mildly elevated but he wants to run liver panels twice a week to check on them. They did NOT come down last time, so I don't anticipate they will be to quick to go down this time, although I'm going to have a little more time off than planned. BB doesn't want me to start consolidation until the week of July 13, in order to give my marrow time to recover. That's fine with me...more time for the M-spike to fall. I'll be on bridging therapy (50% dose-reduced thal and dex) in the meanwhile, so that, also, should cause it to decrease.

When I return, he has ordered another Fine Needle Aspiration of the lesion in my right hip, which is the largest at 3.2cm as of 5/20 (my last PET). It was pushing 8cm at the start of treatment, so it is smaller. But he wants to know what is going on it there. Hopefully it will be gone by the next PET and he won't need the FNA...because readers of the blog will perhaps recall my last experience with the snake-handling religious maniac that does those.

I advised the nurses how it was going to go down this time...that I was going to have an anesthesiologist in the room administering the proper drugs, not a bunch of buffoons standing around saying "yer not gonna remember any of this hahaha!!" while I'm telling them I'm lucid and going to remember every second, which of course I do to this day.


After five days of nurses looking at that Dex rash on my neck and saying "it'll go away" the nurse in BB's clinic instantly said "gawd what the hell is that on your neck?" and immediately prescribed some creme. It would have been nice to have had this a week ago. Conveniently, the creme came in a drum the size of a canteloupe so I'm not going to be able to bring it on the plane with me.

While back in LA, I'll go to the lab twice a week to have blood drawn, and they gave me the little kits this time so that two extra tubes will be drawn, clotted, spun in a centrifuge and given back to me to overnight to Arkansas for additional tests. They also gave me a pee jug they want me to mail in.

With this in mind, the quote of the day goes to Mike, one of the nurses in the clinic. "If you're like most people, you won't want to carry a jug full of urine on a plane."

Yes, Mike, I am like most people.

I forgot to mention, yesterday I went to lunch at Chick Fil-A, which I had remembered fondly from my youth. They are a chain perhaps most notable for the owner's decision, for reasons of his faith, not to be open on Sundays. I should say that in California, this is notable. In Arkansas, it is hardly unique. In fact on Sunday if you are driving around looking for lunch, your only options are Shlomo's Deli and Habib's Falafel. [crickets] Is this thing on??? Anyhow...sorry to report that Chick Fil-A was not as good as I remembered.

Okay folks. Be well. My next entry will be from home, probably after I get updated labs.

Transplant B, Day +13: Plateau blues

Well, here's where we are. White counts normal, platelets on the rise, CRP falling, red blood counts still low but they'll recover. Electrolytes normal. Uric acid normal. Yippee.

My M-spike has been at 0.4 for the last three pulls, including the one from yesterday. I know that we haven't seen the full effects of the transplant, I know I'm not done with treatment, I know it will continue to fall, I know, I know, I know.

Doesn't matter. It's hard not to be disheartened. My first transplant, from the day before to the day of discharge, took my M-spike from 4.0 down to 1.6. Yes, it later fell to 0.7. But my second transplant has only taken it from 0.7 to 0.4.

Achieving complete remission -- and immunofixation-negative complete remission at that -- is essential. 85% of people that achieve CR in BB's protocol remain in remission 4 years later (that's the farthest that they had data at this point). If one makes it to six years without a relapse, one can consider to be very likely cured.

The fact of the matter is, I'm not there yet. And it's upsetting, to go through this unbelievably aggressive protocol. And now I find myself second guessing...would I be in remission if I'd gone for the standard protocol, with its additional induction cycle and more intense Melphalan, instead of the lite protocol?

I can hear BB dictating comments on another patient from across the hall. Soon it will be my turn, and I'll have lots of questions for him.