Friday, August 1, 2008

Naturopath Visit

Sunshine and I went to see the naturopath Dr HH last Thursday, with two major issues:

Stable Disease Despite Treatment:

My IgG and M-Spike have been almost level for two months now, even though I have been on the drug trial which includes CC-4047 and dexamethasone (dex). So what can I do to change things, to make the drugs work better? Discussion:
  • Dr HH started by suggesting "proteolytic enzymes," which in some studies have significantly improved the outcomes of chemotherapy. Here is one example (read down the page a ways). I've already started taking the enzymes between meals.
  • In addition, she suggested that I eat more meat! Naturopaths tend to lean toward the vegetarian end of the chow spectrum, so she admitted that this was strange for her, but she thinks I might benefit from red meat: beef, lamb, bison, mutton, venison, salmon, and perhaps not so much chicken as I eat now. Huh. We originally cut back on meat to reduce inflammation, but my inflammation markers are quite low, so I'm up for this change.
  • I am currently taking reishi mushroom, and Dr HH suggested a more potent variety known as AHCC (Active Hexose Correlated Compound). I will order some. Naturally, it's quite a LOT more expensive than the reishi.
  • Myeloma is not just any cancer - it is a cancer OF the immune system. Therefore, we always have before us the question: "Should we do things that are intended to bolster the immune system, or should we not?" I asked her to go through the list of supplements that I have been taking, with an eye toward eliminating any that may not seem necessary, and especially any that are only intended to boost the immune system in non-specific ways. We struck several off the list. In particular, we eliminated:
    • Coenzyme Q-10, of all things. Co-Q10 supports mitochondrial function, and is thought to be a very good supplement, but it's possible that the mechanism by which CC-4047 kills naughty plasma cells may involve interfering with mitochondrial function. If so, then Co-Q10 could be working against the CC-4047. I'm in way over my head here, but for at least a month I'm going to cut back on C0-Q10.
    • Borage Oil. I ran across one obscure reference suggesting that borage oil can decrease NK cell activity, which is probably not good. His claims are unsubstantiated, but for now, I'll stop it.
    • Others. The link to the right labeled My Supplement Regimen shows the old list with several supplements crossed out.
Mitigation of Damage from Dexamethasone:

Dexamethasone is an important part of the treatment, but it does have significant side effects. It can cause muscle wasting and accumulation of fat around the stomach, and it causes insulin resistance very much like that of a diabetic. In fact, it can make a person a diabetic. Bad stuff, and oncologists may not have much advice to offer about reducing side effects. Discussion:
  • Carbohydrates are not good on dex days, because they change to glucose and the dexamethasone interferes with "glucose transport." This prevents the organs and muscles from absorbing glucose, resulting in fat buildup instead. Something similar happens to ingested fat. This leaves protein as the preferred nutrient, which does fit well with the new higher-meat diet. So the plan is to reduce carbs and fat on "dex days" (the two days after taking dex), and eat plenty of protein, but reduce total calories to prevent fat accumulation. Anyway, that's the plan.
  • Add a chromium supplement, because chromium can improve glucose transport. Up to as much as 1000 micrograms per day. And hope that the mechanism by which dex kills myeloma plasma cells is NOT by interfering with glucose transport to those cells. Yikes.
  • On dex days, aerobic exercise is difficult because the muscles run out of glycogen and cannot easily replenish it. Dr HH suggested doing resistance training on those days instead, because that will not significantly depelete glycogen stores but will nevertheless teach muscles to build themselves instead of growing smaller.
The idea is to shake things up and try to create movement in the M-spike and IgG. Hopefully that movement would be down, but either way we would learn something.

Dinner: Organic chicken w ancho pepper, vegetable curry with organic sweet potato, organic zucchini, organic carrots, organic chard, onions, and organic strawberries.


  1. As I was reading your fascinating post, Don, I thought of a couple of things. One is that Dr. Nicholas Gonzalez of NYC has found that his myeloma patients do better on a red meat diet (as raw as possible, and free-range if possible), so I think your naturopath is onto something, here. I am a wannabe vegetarian, but I do confess to feeling better after swallowing a bit of red meat (sigh). There you go.
    Dr. Gonzalez also uses enzymes. And an MMA list member is one of his patients.

    I also have a few questions for you: why did you eliminate feverfew? I ask because I am thinking of taking it this fall.

    And what about ginger root? Why did you get rid of that?

    Thanks for the explanation about CoQ10, since I was thinking of taking it, too. I guess I won't, now!

    I have read iffy things about borage in the past, so I am glad to have this confirmed.

    Anyway, great post! (as usual!), gives me lots of food for thought...
    Florence, Italy

  2. In fact Dr HH was reading a web page of Dr Gonzales when we walked into her office! BTW I have also heard Dr Durie say that he thinks patients do better on an Atkins-like diet.

    I have no reason to suspect feverfew, ginger, alpha lipoic acid, or several others. But because we don't really know how most of these supplements react with the drugs, much less with each other, I'm temporarily choosing only those that I'm pretty confident about.

    If this does not result in a change for the better, I will put most of the dropped ones back in the regimen.

    Have a great day Margaret!

  3. Don-

    You may have mentioned this previously but why do you not supplement with fish oil/cod liver oil? Especially if you are concerned with inflammation?

    Also, I supplement with wobenzyme and have read studies supporting this family of enzymes in mmers.

    David Emerson

  4. Hi, Don -- I've been reading your blog since being diagnosed last year and have found plenty of useful and heartening information in it. I'm finally getting around to asking about something you mentioned in a much earlier post.

    Like you, I'm on dex -- a mere 12 mg weekly now that I've achieved remission (down from a whopping 80 at first and then 40). But like most poeple, I'm still trying to manage the side effects even at that level. You mentioned way back that you take it at night, which seems contrary to accepted practice. What's the theory, and how has that worked for you?

    Thanks, and keep up the great work!

    Curt in Maine

  5. Hi David,

    I probably should supplement with fish oil. I've avoided it just because of the possibility of contamination, but truthfully I haven't thought too much about it. I do get some in the flax seed and probably all the other good food.

    Right now I'm set for this one-month "cycle" but I will look at it. Thanks for the reminder!

    My naturopath mentioned wobenzyme but thought I should concentrate on this particular enzyme to deal with myeloma.


  6. Hi Curt,

    I'm embarrassed to say that I don't have a theory about taking dex in the night versus the morning. When I started on the study, I got the CC-4047 capsules and the dex pills and Dr L said "start tonight," and that set the pattern. I think that I remember asking whether it mattered, morning versus night, and she said it didn't, but I'm not sure of that. Now it's on my list of things to ask at the next visit. I'll post the response.

    I take the dex with dinner, always, and the CC-4047 just before bedtime because, like thalidomide, it can improve sleep and I think it does.


  7. Hi Don,

    I'm highly recommend you adding AHCC (6 grams per day)and Fish oil (Phamacutical grade)6-10 grams per day to your protocal, all of them can help you stop weight loss (at least stable weight). Base on my experince to treating my father on Myeloma. He had weight loss every month but after I add fish oil it can stop.

    For curcumin, I think you could dissolution and heating it on fat like Coconut Oil or Coconut milk to improve Bioavailabilities of it. and trying to add Turmeric on your food.



  8. Don, Where is this Naturopath visit you are talking about? Is it part of Mayo and is it focusing on the nutrition part of fighting Myeloma? Have you heard anything about Mangosteen juice (XanGo) as being helpful? My son has been taking it from the time he was diagnosed and is still in the smoldering stage-almost 3 years. Marilyn

  9. Hi Marilyn,

    We go to a Naturopathic Doctor (ND) at Wellspring Naturopathic Clinic. She has particular knowledge in oncology, and she teaches about all aspects of a person's lifestyle, including nutrition. She has no connection to Mayo.

    I have heard of mangosteen but have not investigated it. Maybe I should.


  10. Hi Don, Thanks for the information-we will check it out.


  11. Hi,
    Here some things to check out:
    WOBENZYME has an orphan drup status for MM. Red meat has heme iron (cannot get from vege source)for rebuilding the blood. AVEMAR, inhibits glucose from getting into cancer cells. They use this in Hungary and Europe, created by the man who discovered Vitamin C. Harmony CO. recommends taking it with AHCC (IMMPOWER mushroom complex). Alpha Lipoic Acid IV drips can significantly help peripheral neuropathy. Also, ALA IV drips with LDN has had some good results with cancer. Check out LDN website. Stay away for glutamine free-form amino acid, it feeds myeloma cells!! We know from experience and also studies...
    We were drinking mangosteen, but it did not keep his MM away. (Maybe started it too late along with the glutamine..?) Everyone is different.
    Interesting ariticle on Chinese herbs that lower IgG, and raise WBC and RBC and platelet levels:

    More later. Best to everyone,

  12. You've made my day! I just found your blog and I needed to hear some good news. I am a big fan of red meat (as rare as possible).