A Patient's Thoughts On Supplements

Revised May 7, 2003

Welcome

Rod Anderson Pic I am a fairly recent member (1-1/2 years ago) of the International Waldenstrom's Macroglobulinemia Foundation (IWMF), and this page is intended as a private resource for any other member of the IWMF interested in the question of supplements. As you know, much useful information can be found at the IWMF website and/or by joining the IWMF TalkList (which you can join by going to IWMF Talklist website (or by sending an email to IWMF-TALK-SUBSCRIBE-REQUEST@home.ease.lsoft.com) and/or by joining the IWMF CAMTalkList (which you can join by sending a blank e-mail message to join-iwmfcam@iwmfcam.talklist.com with your full name as subject). The page below is offered as a non-expert's preliminary and incomplete assembling of information in the hopes that IWMF readers interested in CAM and supplements may find it a useful additional source for their own investigations.

This page was initially prepared solely for my own use -- it contains extensive quotations from books and from other websites and while the quotations are identified and the sources acknowledged they are probably a little more extensive than would normally be acceptable under "fair use" protocols without written permissions. In any case, I should reduce some of this material simply in the interests of readability. So I consider this at the moment a private site rather than a public one. And, finally, it is a work in progress, as I keep adding and revising things based on further study. But I hope you may find it useful.


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Introduction

I was diagnosed with WM in Dec/01 -- no symptoms (other than anemia and a very slightly enlarged spleen and lymph nodes), merely a result of following up some anomalous blood-tests (later confirmed with a bone marrow biopsy). My IgM is still very low (21 g/L or 2100 mg/dL) so I up to now I have been among the fortunate group in the "watch and wait" category -- however, with HGB falling to 69 (having fallen from 115 at the time of diagnosis) -- but with no signs of fatigue as yet -- my hematologist concluded that it was time to start treatment. I have just begun the Phase II Clinical Trials for PS-341 at the Princess Margaret Hospital in Toronto. A great many of the supplements I discuss below I am no longer taking -- because my hematologist did not want any possible interactions with the PS-341 treatment -- so I am now basically taking just the vitamins (and Aloe Vera juice and Udo's Oil). However, I hope my earlier research into supplements may be helpful to some of you. I have not yet revised all the following commentary to indicate which supplements I am, at the hematologist's request, no longer taking. But hopefully the discussion will still be clear for most readers.

I decided to explore the use of supplements to assist the immune system in cases where there was some at least partial medical evidence of efficacy. Clearly the medical evidence is mixed in many cases. But it is more than zero. Accordingly, it seemed sensible to adopt what environmentalists (advocating control of greenhouse gas emissions despite some continuing scientific controversy over atmospheric modeling) call "the precautionary principle" (act as if some of the tentative theories may be right providing your action does no harm).

My initial source was the extremely helpful presentation which IWMF member Antoon Verhaak made to the IWMF session in Miami in March 2001, which is viewable on the website www.kanker-actueel.nl. Antoon's supplements are based on advice from his doctor, Dr. Valstar. My own supplement regimen began by following his suggestions closely with a few modifications based on what was readily available in Canada, or what my bottle's label suggested, or, in some cases, what a few other people or websites suggested. Over recent months a few additional changes have been made based on advice from my ND (Dr of Naturopathy).

If one were going to take everything someone somewhere recommended one would end up eating a whole drug store every day. This would be both nonsensical and unaffordable. I have therefore tried to limit what I take to supplements where there seems to be some consensus from several authorities as to their efficacy for immune enhancement and/or cancer resistance. And I have, as already stated, used Antoon Verhaak's (and his doctor's) list as an important starting point. My researches are as yet incomplete. Maybe a few other things should be added; maybe a few should be deleted. You will see that there are a few supplements where references and discussion are not as yet given. I hope to complete these over time.

Caveat

I am a patient and not a medical expert. Of course, everyone should decide (with medical advice, if available) what his or her own regimen of supplements (if any) should be. I merely offer the following searchings of an amateur in the hope that they may be a useful additional source for each reader's own investigations.

I have made frequent references to Antoon Verhaak's dosages and he was kind enough to clarify a few points for me by e-mail. In many cases I have adopted the same or similar dosages. In cases where the dosages differ it is often because the supplements I could locate here in Cobourg Canada may differ in their composition from some of his supplements and I have therefore paid attention to the bottle label suggestions (and to my ND's and others' recommendations). In no sense is this intended to be a debate. I deeply appreciate the information that Antoon provided to the IWMF (and which continues to be available on the website quoted above). I am simply documenting, in case the information is useful to other readers, how I arrived at the dosages and the supplements I am using. If any reader has any comments, corrections, or suggestions, I would very much appreciate hearing them. My e-mail address is rod@rodmer.com. Good luck in your own investigations of supplement regimens.

Finally, the obvious point should be made that everyone is different. A supplement that is critical for one person may well be inappropriate for another. Professional medical advice is desirable. Some of the supplements I discontinued were stopped because my ND said they were either unnecessary for my particular situation or would interfere with other supplements or remedies I was taking. I intend to continue to seek advice from my haematologist and the cancer clinic with which he is associated.

Contents

In the material below I provide:

  1. a table of contents by supplement
  2. the sources, contents, and dosages I am currently using
  3. some assembled discussion (including some website and book references)
  4. Questions currently unresolved

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Table of Contents by Supplement

SupplementDailySource,   DiscussionImmuneAnti-
Dosage    Contents,EnhancerCancer
& Dosage
Comments
Introductory
Discussionsee explanation below
Currently taking
Acidophilus**1 capsl=2 bln cells ?
Aloe Vera Juice2 fl oz **
Beta Carotene25,000 IU?*
Bromelain**2000 mg?
Cod Liver Oil (Vit A & D)A 4950 IU; D 400 IU*
Coenzyme Q10 (ubiquinone)200 mg + VtE 850 IU*?
Flaxseed and Flaxseed Oil (etc.)2 tbsps oil + 3 tbsps seed**
IP6 (inositol hexaphosphate)500 mg**
Lecithin**3600 mg
Pau d'Arco**2400 mg*
Soy Isoflavones (Genistin etc.) **84 mg G+150 mg isoflav*
Vitamin Asee Cod Liver Oil*
Vitamin B50 Complex50 mg ea of 1,2,3,5,6 etc.**
Vitamin C2000 mg*
Vitamin Dsee Cod Liver Oil*
Vitamin Esee CoQ10**
**    have temporarily dropped (merely for reasons of economy) as less urgent - but might re-instate if I could find anyone with advice on these subjects
-
No longer taking (but discussed)
Fos-A-Dophilus (acidophilus etc.)?
Ginseng*
Iscador (Mistletoe)**
Kombucha Tea*
Quercetin*
Selenium Yeast*
Thymus Concentrate*
Trans-Resveratrol*
-
Have never taken (but discussed)
Echinacea*
Essiac*
Glutathione*
Magnesium
PSK (Polysaccharide K)*
Sterinol*
Zinc*

Explanation of "Immune Enhancer" and "Anti-Cancer" indications above
I have based these simply on what I have noted in the "Discussion" sections below. Of course, some of the categorizations are uncertain and different people will have different views. I'm no expert. And a further point is: indications of anti-cancer efficacy may sometimes be related to solid cancers and not apply to lymphomas like WM.

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Source, Contents, and Dosage

[note: references to "Antoon" are to IWMF member Antoon Verhaak, on whom I relied tremendously in assembling my own list of supplements -- Antoon's dosages are as indicated in his Mar/01 presentation to the IWMF, which may be found at www.kanker-actueel.nl or, with respect to subsequent modifications, as kindly advised by him by e-mail -- but, of course, he (or his doctor, Dr. Valstar) may have made yet subsequent changes which I have not reflected here]

Currently taking

Acidophilus
Aloe Vera Juice
Beta Carotene
Bromelain
Cod Liver Oil
Coenzyme Q10 (ubiquinone)
Flaxseed and Flaxseed Oil (etc.)
IP6 (inositol hexaphosphate)
Lecithin
Pau d'Arco
Soy Isoflavones (Genistin etc.)
Vitamin A
Vitamin B50 Complex
Vitamin C
Vitamin D
Vitamin E

No longer taking (but discussed)

Fos-A-Dophilus (acidophilus etc.)
Ginseng
Iscador (Mistletoe)
Kombucha Tea
Quercetin
Selenium Yeast
Thymus Concentrate
Trans-Resveratrol

Have never taken (but discussed)

Echinacea
Essiac
Glutathione
Magnesium
PSK (Polysaccharide K)
Sterinol
Zinc
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Discussion and References

Conversion factors

1 fl oz = 30 cc or 30 ml (actually 29.6)
1 mg = 1 milligram (0.001 g) 1 mcg = 1 microgram (0.000001 g) Back to Top

Brief comments on the Zone diet

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Some useful website references

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Some useful book references

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Discussion by individual supplement

Currently taking

Acidophilus

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Aloe Vera Juice

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Beta Carotene

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Bromelain

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Cod Liver Oil

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Coenzyme Q10 (ubiquinone)

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Flaxseed and Flaxseed Oil (etc.)

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IP6 (inositol hexaphosphate)

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Lecithin

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Pau d'Arco

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Soy Isoflavones (Genistin etc.)

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Vitamin A

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Vitamin B50 Complex

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Vitamin C

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Vitamin D

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Vitamin E

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No longer taking (but discussed)

Ginseng

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Iscador (Mistletoe)

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Kombucha Tea

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Quercetin

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Selenium Yeast

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Thymus Concentrate

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Trans-Resveratrol

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Have never taken (but discussed)

Echinacea

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Essiac

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Fos-A-Dophilus (acidophilus etc.)

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Glutathione

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Magnesium

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PSK (Polysaccharide K)

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Sterinol (as a generator of DHEA)

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Zinc

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Other possibilities suggested by an IWMF member

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Questions as yet unresolved

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http://www.rodmer.com/RodWMCAM.html -- Revised May 7, 2003
Rod Anderson, e-mail address -->rod@rodmer.com