Sunday, September 5, 2010

Calling all homeopaths...or, Peruvian mojo powder?

A friend of mine was talking about something called Maca powder.  It's evidently a root similar to a radish grown in the Andes.  And apparently it is very potent stuff.  Many benefits but chief among them promotion of libido.  And there are legitimate scientific studies in both lab animals and humans that prove this out.

Of course all the hippie dippie websites that promote herbal remedies likewise promote this particular thing.  However I'm willing to consider this one provided it (a) works and (b) doesn't conflict with any of the cancer therapies I am on.  I'm prepared to accept item (a) above as a given (or in any rate, I would find out quickly) but item (b) remains an issue.  I will ask BB and crew about that next week but in the off chance anybody here knew anything, I thought I'd mention it.

Other questions for BB and his crew next week: what's with this residual bone pain, how does the MRI look, how are long-term revlimid studies looking (BB is testing whether or not continuing with Revlimid in lower dosage after the three years of initial maintenance are over is beneficial), and what is the latest thinking on re-immunization.

Anybody else think of anything I should ask?  :)

Hope you are enjoying your weekends!


  1. Nick.
    Always appreciate your posts. But this one has me confused. If TT3 is showing cure in the data, why would anyone want to continue on Rev.? Is BB saying TT isn't curative?

  2. Part of the cure protocol is keeping on maintenance therapy for three years after completion of primary therapy. After this point, very few people lose remission in low-risk disease (eye-balling it I would say fewer than 5 percent). I think BB is testing whether or not that csn be further reduced by continuing with low-dose revlimid, but he is probably also trying to solve for higher-risk MM to see if outcomes can be improved.

    You raise a good question! I will bring it up.

  3. Yeah....I'm intrested in long term Dexamthasone as a maintenance therapy. To me, it is the most intrusive of the meds I take. And, after 4 years of heavy weekly dosage, I find the negative effects are cumluative.....sleep problems, gastro- intestinal (problems uninating, constipation) difficutly controlling hunger, etc. But, I'm in remission and compfortable in every way except for the dex side effects. I'd be interested in BB's take on the efficacy of dex and a long term maintenance modality.

  4. Sure! Here are questions that I'm curious about:

    Q: Is that next Gene Array really, come on, reeeally necessary? BMB, okay, but another GA?

    Q: A fellow UAMS patient shared that he asked BB 'why 3 years for maintenance?' BB, according to the patient answered 'It's a gut feeling?' If I can trust somebody's 'gut' it's BB, but maybe he can clear this up a bit.

    Q: Is there a list of 'acceptable supplements' that BB agrees with?

    Q: How can we raise (1) platelet levels & (2) energy levels while on Rev & Velcade w/out adjusting dosages?

    Q: How bad should we let PN get before adjusting treatments?

    Q: Will he let me drive his Ducati?

    This isn't an assignment! Just some of the things that I'm curious about if it comes within your flow of conversation.

    Travel Safely! Come back with Good News! Break! ... sorry, football season approaches.


  5. Most herbs and homeopathic remedies are taken in such small doses it shouldn't be an issue. Even the "Green Tea" Scare was completely mis-duplicated by the media, physicians and patients and I had that conversation directly with the Velcade researchers. However, having said all of that, Dave does avoid everything except scripts on his Velcade infusion days, just to be safe and its easy for him to remember.