Saturday, March 8, 2008

So What's All the Fuss?

I'm sure that I will find out! But so far, the first morning after the first dose of CC-4047 2 mg and dexamethasone (dex) 40 mg, I feel quite normal. I was a little restless toward morning, but that's not unusual, and not surprising in these circumstances. I got back to sleep and awoke refreshed. Are my thighs a little tired feeling, or am I imagining that? Time will tell.

This is Saturday morning, so normally I would be running with the St Croix Valley Runners right about now, but it's six degrees BELOW zero and I have wimped out! I'll run on the indoor track at "the club" later today, with my sweeties. That will be an interesting test.

Yesterday's visit to Mayo was uneventful, really. No more holes poked in me. We did a lot of talking and I picked up the CC-4047 and dex. A few things got resolved:
  • Logistics: I will get weekly blood tests (CBC) at the Stillwater clinic, faxed immediately to Mayo, to be sure that my blood counts remain within a normal range.
  • For a few months I will return to Mayo every month; I already have an appointment for April. If things go well, I will later have some of my monthly appointments with Dr Petryk at MOHPA, to save the drive down.
  • Dr Lacy does NOT think that the lambda light chains are a sinister part of my myeloma, so she has not ordered 24-hour urine collections. That's a minor inconvenience (major for women) that I will not face every month.
  • WITH the CC-4047 and dex I also take:
    • 325 mg aspirin daily, half at night and half in the morning, to ward off deep-vein thrombosis (DVT) from the CC-4047,
    • Ranitidine (generic Zantac) tablets 75 mg, one in the evening with the dex, and one the morning after, to reduce stomach acidity and hopefully ward off ulcer,
    • 400 mg acyclovir to ward off shingles, because I'm messing with my immune system.
  • Dr Lacy gave me a 2006 Mayo Clinic study of the clinical effects of green tea (especially EGCG) on patients with early-stage chronic lymphocytic leukemia (CLL). The results were quite positive, and even though myeloma is different from CLL I will continue with the EGCG.
  • I will continue with the curcumin as well, but haven't decided about other supplements. Need to make an appointment with my naturopath.
  • My electrocardiogram shows "marked sinus bradycardia" (slow heart rate). That means I'm a runner!
  • The bone survey shows "generalized spotty osteopenia" (between normal and osteoporosis) but no lesions from the myeloma. We know, though, that x-ray doesn't always show lesions before the bone breaks.
  • After seeing that, looking at my previous bone density results, and knowing that I would be taking dex, Dr Lacy decided to prescribe pamidronate (Aredia) in a modest amount. But as we discussed this, she guessed that she didn't really care what bisphosphonate we use, and thought that Boniva or Fosamax would do as well. Those simple pills are much more convenient than 90-minute Adedia infusions at a hospital. I got away without the prescription actually in hand, but will eventually probably be taking a generic version of Fosamax weekly to maintain bone density.
  • She volunteered that the running certainly helps as well.
  • I intend to have a visit with a physical trainer to learn some good exercises for strengthening my back muscles, because (as the naturopath HH points out) bones will strengthen wherever the attached muscles are worked and strengthened.
I feel good about being personally proactive. If I had not made the desision to go to Mayo, I would not have had the PET scan and would not have learned about the lesions in my shoulder blades and spine. Further, I would not be in the CC-4047 trial.

The CC-4047 is 2 milligrams. How can two little milligrams of anything be so potent? Better living through chemistry (I hope).

Live well and long.


  1. Don, I am glad you had a good first night and good experience in Rochester. Can you tell me what prompted her to order a PET scan? And how did your bone marrow biopsy turn out?
    Thanks and I wish you the best.

  2. Thanks ppl,

    I believe that she ordered the PET scan because my numbers were high but there were no other CRAB symptoms, so we were on the fence about treatment. If it had shown no hot spots we would have gone with more watchful waiting.

    Thanks for asking about the BMB - I forgot to post about that. And I'm actually a bit confused about the results. I THINK that there are about 10% plasma cells in the aspirate, but more like 22% in the bone marrow core. I need to find out more about this, because I had not realized before that it's possible to have two different counts from the same BMB!

    Best to you too, Don

  3. Don,
    I'm here from Sunshine's post. Just read this one and the one before. You have such a positive attitude - I think that will take you a long way. I hope that you can run through this - for stress relief, to feel strong, to feel joy. Keep that great attitude going!

  4. Dear Don, you're so brave and I admire you very much!

  5. Don, could you give us the reference of the Mayo study on EGCG? I know that Mayo started a clinical trial on EGCG, but I was unable to find a publication with its results.

    Many thanks, Sherlock

  6. I echo everyone's comments, in particular backofpack's on keeping that good attitude! I am cheering you on from over here!
    Go, Don!!!!
    Florence, Italy

  7. Thanks guys,

    I wish I was brave, but in truth I sat there quite a while holding the dex bottle in my hand before I summoned up the courage to count out ten 4 mg tablets and swallow them.

    Mayo Clinic has a press release about the small EGCG study here, and the full article is supposed to be here, but their server is down right now. For a Google search you can use part of the title: "Clinical effects of oral green tea extracts".

    BTW I have been taking ECGC in high doses, but only for about a month.

    Take care, Don

  8. Thank you very much Don. I was able to find and download the article they gave you.
    Take care and let us know how things go.