Wednesday, June 23, 2010

Oh the irony, or, OUCH!!!!!!!!!!!

So as I was up in the middle of the night, posting my blog update below, I also visited the blog of a fellow Myeloma traveler from New Zealand.  After years of enduring this worst this disease has to offer with far more grace than I'd be able to, this person was (finally!) able to be placed on a Revlimid trial and is responding.  I was so happy for him, and I posted a comment on his blow to that effect, and also let him know that should he experience leg cramps, they can be controlled with over-the-counter magnesium supplements.

I haven't had a leg cramp in weeks.

That is, until about an hour after I went back to bed.

During the dozen or so horribly painful leg cramps that I've had on maintenance, I've often thought, as the pain subsided, "thank God it didn't hit both legs at once...I don't know what I would do."   Well, gentle readers, I now know what I would do.

At 5:45 I was woken from a dream with a rapidly developing cramp in my left leg (deep in the center of my left calf).  I started to rub it and stretch but it was to no avail.  The pain was excruciating.  And as soon as I recognized it, my right calf got one, too.  It felt like someone was sticking their thumb and forefinger of each hand into each calf, digging in about two inches, and tearing the muscles in two.  In both legs.

I fell out of bed screaming, basically, rolling on the floor for about 30 seconds, and then whimpering rather than screaming for another minute or so.  I woke up my poor wife from a deep sleep and she was a bit spooked given that I was screaming at the top of my lungs!  Fortunately the kids slept through it.

I'm going to track these things more carefully.  I had been using magnesium pills that had been prescribed to me over a year ago when I was in the hospital.  I ran out of those (by design) about four days ago and have gone back to the over-the-counter supplements.  I am gathering that the direct magnesium works better!


So Sid, if you are reading this, take note.  :)    I have heard quinine also works well, but that suppressed platelets, so it's not advisable, unfortunately, unless you've got a much healthier platelet count than mine.

low platelets...

Had my infusion yesterday at GD's office. I got my test results back from the previous week and they looked pretty damn good. The chemistry was pretty much all in the normal range with the exception of slightly elevated AST and ALT from the liver, owing to a combination of therapy, lipitor and the grape. Probably mostly the grape. :)

I am taking a supplement called Liver.52 (available from Amazon and elsewhere) which has brought the AST down to near normal. The other liver markers (GGTP, alk phosphate and LDH) are all normal. LDH is tracked in active myeloma treatment so to see this squarely in the normal range (reference range is 100-250 and I am 140) is great.

Other markers are also good. Beta 2 Microglobulin, a key marker used in the staging of Myeloma, is around 1.3. Normal is less than 2.5, although i was around 2.3 at diagnosis. At any rate, it is low and that's a welcome sign.

I remain immunofixation negative which is of course the thing I am really focused on. Light chains are all normal. IGA is moving back into the normal range after being suppressed by therapy, and that is a sign of "recovering marrow" per BB so that is all good as well.

Platelets, though, were a different story today. The nurse drew my blood, and gave me the aforementioned labs to review (a victory, since these folks are usually terrible about doing so). When they had analyzed the counts from the blood draw, she came in and said that the doctor was not approving Velcade since my platelets were at 80. I explained that I had taken my last Revlimid for the cycle and that the platelets should be bouncing back, and to please let the doctor know this. Meanwhile I called BB's right arm BJ who confirmed they would not hold Velcade and that the Revlimid is responsible for platelet suppression. I let the nurse know this and asked her to give me the Zometa infusion for which I was due while she presented my case to GD.

She came back in and said GD had approved the Velcade, which I got. As I was leaving the office, I bummed into GD and he noted he "almost did not approve it". Frankly, had he not, I would have insisted he speak with BB but if that failed as well, I would be taking my business elsewhere. This stuff is $5,000 an infusion -- they are getting paid well to execute BB's instructions and since it is my health that is being impacted, they better do so.

My instinct at the time of choosing somebody for maintenance therapy was that i wanted somebody who believed in the protocol that was being followed. My instincts were totally correct and this is a good example of where it might run into trouble. For a doctor who doesn't believe my therapy is curative, they are likely to be much more cavalier about the Velcade. For one who believes it IS curative, they recognize how critical it is to follow the protocol. I am sure had i stuck with SH, there would have been no Velcade yesterday.

As evidence by the time of this post, the dex is at it again. I am going to get a couple of hours of sleep now before work rears its ugly head. :)