Wednesday, June 23, 2010

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. :)

9 comments:

  1. Hello Nick. Just wanted to let you know that Bruce's platelets were 56 and he ended his Revlimid yesterday. Our cancer center here is great and they just follow what BB wants. Glad to see you are doing well.

    Tell Jill hello from the two of us.

    Bruce & Jan

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  2. Nick,
    Another good Nick example for us to follow.
    Be a proactive patient, do your homework, understand why we are at clinic today and what your medication and treatment is. Be prepared to stand up and challenge any discrepancies.
    I am pleased to see your progress.
    Good health,
    Sid

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  3. I second all Sid has said, listen well and then state your claim, It's the best we can do. We can debate and question every step of the way and we must. Dear Hamada's Platelets went so very low on Velcade (22) which has not helped with reduction of myeloma load at all. He is not continuing with Velcade and will now after a little rest try Revlimid. Nick you are doing so very well - keep up the great work.
    Best wishes to you both.

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  4. Thanks for the interesting post. Your platelets recover with time and everything will be fine. Good luck to you!

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  5. Thanks for the interesting post. Your platelets recover with time and everything will be fine. Good luck to you!

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