Sunday, August 28, 2011

Thoughts on two years of maintenance...full list of side effects, meds, etc.

Hello friends.   Sorry to take so long between posts but there's been precious little to update you on and I don't want to just blabber without having a point!  : )

On Tuesday I start the last week of the 24th cycle of maintenance, which means in a few days I will have finished two years of drugs.  Velcade, Revlimid and Dex as most of you know, are the three primary agents.  On top of this I add host of drugs for supportive care, as follows:


  • Revlimid suppresses the immune system and leaves me susceptible to shingles.  Therefore I take daily Acyclovir.
  • Revlimid can cause peripheral neuropathy.  Therefore I take daily MetaNX, a variety of B vitamins that have been shown to reduce neuropathy among Alzheimer's patients.
  • Revlimid can causes blood clots, or deep vein thrombosis.  Therefore I take daily aspirin as a preventative.
  • Revlimid suppresses platelets.  I don't take anything for this, but it is part of the reason which I take one week off the drug every four weeks -- to allow them to recover.  I take the aspirin to thin the blood despite this thrombocytopenia (low platelets) because it evidently is a different type of clotting that causes DVT.  At any rate, keep the low platelets in mind...
  • Revlimid causes hideous leg cramps, which can be prevented through quinine (which I would strongly prefer, except that it suppresses platelets...so I don't go that route).  The only other route is to take magnesium supplements.  Through trial and error, I take 750mg of Magnesium a day.  Any less than this and I run the risk of waking up at four in the morning with a rusty hook in my leg (or at least that's what it feels like).  750mg of Magnesium a day is essentially like finishing the day with three shots of a powerful laxative.   Every day.  
  • Dexamethsone causes pretty severe acid reflux, so I take Pantoprazole as needed (usually the night I take Dex and the following night) to keep this at bay.
  • Dex also keep one awake, so I take Ambien or Ativan / Lorazepam 1-2 nights a week to ensure I get a decent night's sleep
  • Which leaves Velcade.  Velcade causes flu-like symptoms, nausea, etc. and generally the Dex (in addition to fighting Myeloma) helps to offset these symptoms by suppressing immune response so you don't get the fever as much, don't get the swelling, aching, etc. that comes with the flu, etc.
  • Velcade, though, I have found, shuts off my digestive system.  This is not particularly unusual, I am told.  In fact, I just learned there is a name for it: gastroparesis.  But I get the infusion on Tuesday afternoon and I find that by Wednesday, things have shut down, and they don't resume until Friday AM.  That means anything I eat Wednesday or Thursday sits in my stomach, undigested, making me feel horribly bloated.


This is without a doubt the worst of the side effects of my treatment.  And the last time I was in Arkansas, they suggested I take Ragalin / Metaclopramide, which is used to treat gastroparesis.  I have taken one pill the evening I take Dex, then one pill the next morning and evening, and again the next morning and evening.

Sometimes this works.

This last week, while on vacation with the family, it did not.

I found myself with the worst vomiting and nausea I've had at any point since diagnosis, which took me out of commission from 3PM in the afternoon through the next morning.  I couldn't even keep down the antinausea pill.  It was pretty rough.

I will take this up with the good folks in Arkansas when I see them a little more than two weeks from now.  Hopefully they will come up with an alternative that works better.

I receive 2.5ml per week of Velcade.  Times 100 infusions, that means...gadzooks...2500ml of Velcade.  Have I really had 2.5 LITERS of this stuff pumped into me by now?

Toward what end, one might ask?

Well...



Okay, not the first time I have shown this slide.  I'm now at the 2 year point of CR, on the low-risk slope.      About 92% of people, having reached complete remission under Total Therapy 3 (which includes Velcade) are still in remission at this point.   At around year 3.5, the line flattens out.  I will get an update on this chart, which is a couple of years old, when I get to Arkansas but the point is: if it hasn't come back by year 4, it ain't coming back.  About 89% of people that are low-risk and who reach complete remission are cured.

If I take 89/92, that's 96.7%.  So as of now, I have a 96.7% chance of being cured.  Pretty damn good odds, I'd say!

So that's why I continue.  One more year of this and hopefully I'm done...although frankly I wouldn't mind continuing to the 3.5 year point because that when it fully flattens out.  But doing so will require them to find a better solution for my gastroparesis / barfitis.




6 comments:

  1. Great job... I know you will do great..

    I'm going to be down there next month to see Mickey. If your around maybe we can have lunch?

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  2. There's light at the end of the tunnel, baby! Stay tough! BTW: I wonder if there's such a chart for folks who used Thalidomide. Do you remember where you grabbed that graphic? Dom was 2 years in July.... CR. Completely off of treatments. I enjoy your blog, Nick-

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  3. Keep up the great work Nick - it's a tough regime but you are mastering it well with such good results. All best wishes from this end.

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  4. Hi Nick,

    Love the blog. Happy to see you doing well.

    I did send you an email a few days ago that may be caught in your spam folder as I didn't hear back.

    In any case, keep it up!
    Danny

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  5. Nick, have you considered taking Velcade by subcutaneous injection instead of infusion? I too am being treated at UAMS MIRT and my oncologist there Dr. BN just gave me the approval for subc Velcade which he believes can reduce PN.

    Pete

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