The Leukemia & Lymphoma Society - Fighting Blood Cancers
12 Replies Latest reply: Nov 10, 2011 9:37 PM by debwitter RSS

Anyone taking supplements or vitamins or ?? after treatment finishes??

katesmom Registered Users
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Kate finishes treatment for Pre-B A.L.L. later this month, and I wonder if anyone is taking special supplements, vitamins or other natural remedies to boost immunity or help stay healthy after treatment for Leukemia ends. I don't want to get superstitious about warding off possible renegade Leukemia cells, but am interested to know about what is out there and if people are taking it??? Thanks!

  • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
    Tex Registered Users
    Currently Being Moderated

    I'm taking a multi vitamin, Calcium with D and folic acid.  These were all prescribed or, at least, approved by my doc.

     

    You'll run into folks who've done the alternative "medicine" trip who are convinced they've found a miracle cure.  Thing is that's not supported by research.

     

    Finally, some supplements can work against treatment or interact with medications affecting their ability to do their jobs.  Bottom line, make sure your doc has approved anything you take and do the best you can to assure purity.  There can be all kinds of contaminants as these things aren't under the control of the FDA.

    • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
      katesmom Registered Users
      Currently Being Moderated

      Thank you Tex.

       

      We will be done treatment in a couple of weeks, so we won't be interfering with protocol or anything like that. We actually asked Kate's oncologist about adding vitamins or supplements post-treatment prior to my posting the question and he didn't have any suggestions at all. We certainly have had people try to sell us on supplements during the last two years of treatment (things like Mona Vie and acai berries and such) but we had been cautioned against adding anything to the protocol due to a lack of knowledge re. drug interaction with natural remedies. (Of course the natural remedy people rolled their eyes at us, but we trust our oncology team 100%!)

      Thanks for your time! M

      • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
        Tex Registered Users
        Currently Being Moderated

        I wasn't suggesting you ask your doc for ideas.  Few of them have a clue.  I was suggesting that you run any ideas you have by the doc.  Sometimes it's better to talk with a nutritionist at the transplant hospital.  They know what works, what doesn't and where the traps can lie.

         

        I recently asked a nutritionist at the Hutch about that five hour energy stuff.  She waved me off of it because of potential issues with the purity of some of the herbs in it.  This was several years post-SCT.  The end of treatment doesn't mean the end of all of the stupid precautions we'vc had to endure.

         

        Blessings

  • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
    Smurfette Registered Users
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    I was Dx with Non-Hodgkins T-cell Lymphoblastic Lymphoma Stage III in 2000. After treatment my Onc prescribed me Calcium with D and a multi vitamin. I would talk to your Onc before starting any vitamin after treatment.

  • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
    AndyH Registered Users
    Currently Being Moderated

    Hi,

         I've had a recurrence of Stage 4 Non-Hodgkin Lymphoma after 83 months of nothing showing up on exams and scans. As an adjunct to Treanda/Rituxan chemo I am also treating with:

     

    Graviloa     1000 mg/day

    Agaricus blazei 2000mg/day

    Laetrile/Amygdalin     500mg/day

    Essiac Extract          4tsp/day

    Mega Hydrate          2 x scoop/day

    Cell Food                   8 drops/day

    Vitamin D3               3000 iu/day

    Vitamin C                   4000mg/day

    Fresh Broccoli Sprouts daily

    Green Tea  no soda

     

    I have done some research on each of these suppliments and have decided for myself to use them.I have discussed these with my oncologist and he is not willing to commit one way or the other if these are counter productive. I have learned that there are many pathways of healing available. The biggest problems regarding pathways of treatment arise when specialized experts attempt to generalize and believe that their expertise extends into other fields. Unfortunately, many of these extremely talented specialized experts happen to be M.D.s. American medical schools have very little to no structured education regarding nutrition, and nutrition based healing/treatment is strongly discouraged. This makes it difficult for the medical student to prioritize nutrition in light of the multitudinous studies they must accomplish.

    Remember, it pays to "study up" as much as you can, and then talk to physicians, naturalpaths, homeopaths and look for overlaps and statements that support each other.

     

    The VERY BEST Health

     

    Andy

    • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
      Tex Registered Users
      Currently Being Moderated

      Gotta ask, Andy.  What have been the results of your health food experimentation other than what the docs were expecting from the chemo?  What are the benefits you've experienced and are they documentable or anecdotal?  I also have to ask what evidence you have that nutrition issues are a subject doctors are "discouraged" to pursue?

       

      I mean, I know docs don't spend a lot of time on nutrition studies themselves because their job is the discovery and treatment of existing disease.  However, I've had several docs in my lifetime refer me to a nutritionist, someone with formal training in the evaluation of food and nourishment.

      • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
        AndyH Registered Users
        Currently Being Moderated

        Here's a few references on Laetrile:

         

        1) Krebs, E.T. Jr. (1970) "The nitrilosides (vitamin B-17): Their nature, occurence and metabolic significance" J Appi Nutr 22: 75-8

         

        2) Budavari, S., ed. The Merck Index. Whitehouse Station, NJ: Merck Research Laboratories. P.IOI.

         

        3) Krebs, E.T. Jr. "The Nitrilosides in plants and animals," in Vitamin B17. Culbert, M. New Rochelle: Arlington House, 1974. P. 145-64.

         

        4) Oke, O.L. "The role of hydrocyanic acid in nutrition," in World Review of Nutrition and Dietetics, vol. II, Bourne, G.H� ed. Basel: S. Karger, 1969. P. 170-98.

         

        5) Inoserntzeff, T. (1845) Gazette Medicale de Paris, 13: 577-82.

         

        6) Inoserntzeff, T. (1846) Jour Chirurgie und Augenheilkunde, 35: 7-28.

         

        7) Krebs, E.T. Jr. "Nitrilosides (laetriles)," in Vitamin B17 op. cit. P.189-204.

         

        8) Binzel, P.E. Alive and Well. Westlake Village, CA: American Media, 1994.

         

        9) Steffanson, V. Cancer: Disease of Civilization? NYC: Hill and Wang, 1960.

         

        10) Culbert, M. What the Medical Establishment Won't Tell You That Could Save Your Life. Virginia Beach: Donning Co., 1983.

         

        11) Griffin, G.E. World without Cancer. Westlake Village, CA: American Media, 1997.

         

        12) Griffin, G.E. Private Papers Pertaining to Laetrile. Westlake Village, CA: American Media, 1997. 13) Berglas, A. Caassn Cause and Cure. Paris: Pasteur lnst� 1957.

         

        14) Moss, R.W, The Cancer Industry. Brooklyn: Equinox Press, 1999. 15) Culliton, B.J. (1973) "Sloan-Kettering: The THals of an Apricot Pit - 1973" Science 182: 1000-03.

         

        16) Morrone, J.A. (1962) "Chemotherapy of Inoperable Cancer" Exp Med Surg 20: 299-308.

         

        17) Diamond, WJ. et al, eds. An Alternative Medicine Definitive Guide to Cancer. Tiburon, CA: Future Medicine Pub., 1997.

         

        18) Burk, D. and Nieper, H.A. (1970) "Problems of early cancer diagnosis and therapy" Aggressologie 11:1-7,

         

        19) Fishman, W. & Anylam, A. (1947) "The Presence of high beta-glucuronidase activity in cancer tissue" J Biol Chem 169: 449-50.

         

        20) Fishman, W. & Anylam, A. (1947) "A comparison of the beta-glucuronidase activity of normal, tumor and lymph node tissues of surgical patients" Science 106: 66-67.

         

        21) Fishman, W. & Anylam, A. (1947) "Beta-glucuronidase activity of blood and tissue of obstetrical and surgical patients." Science 105: 646.

         

        22) Fishman, W. & Anylam, A. (1950) "Beta-glucuronidase activity in human tissues." Fourth Int Cancer Res Congress 6: 1034-41.

         

        23) Homburger, 1. & Fishman, W. The Physiopathology of Cancer. NYC: P.B. Hoeber, 1955. P.842.

         

        24) Mendel, B. et al (1946) "Rhodanese and the Pasteur effect" Cane Res 6: 45 ff.

         

        25) Giordano, G. et al (1956) "Rhodanese activity of the neoplastic and hemopoietic tissues of rats with myeloma in leukenlic phase" Biochemie Appi 3: 284 ff.

         

        26) Heikkila, R, & Cabbat, F. (1980) "Tte Prevention ofalloxah-induced diabetes by amygdalin" LifeSci 27:659-62.

         

        27) Moertal, C. et al (1981) "A pharmacologic and toxicological study of amygdalin" JAMA 245:591-94.

         

        28) Brown, W. et al (1960) "Sodium cyanide as a cancer chemotherapeutic agent" Am J Obstet Gynecol 80: 907-18.

         

        29) Schmidt, E. et al (1978) "Laetrile toxicily studies in dogs" JAMA 239: 943-47.

         

        30) Anderson, R. & Chen, K. (1940) "Absorption and toxicity of sodium and potassium thiocyanates" J Am Phann Assn 29: 152-61.

         

        31) likeuchi, S. et al (1978) "Benzaldehyde as a carcinostatic principle in figs" 42: 1449-51.

         

        32) Kochi, M.et al (1980) "Antitumor activity of Benzaltlehyde" Cane Ureat Rep 64: 21-3.

         

        33) Kochi. M.et al (1985) 'Antitumor activity of benzaMehyde derivative" Cane Ti-eat Rep 69: 533 ff,

         

        34) litsumlira, T. et al -(1990) "4,6-0-Benzylidene-D-glucopyranose (BG) in the treatment of solid malignant ibbiois, an extended phase I study" Br J Cancer 62: 436-39. 

        • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
          Tex Registered Users
          Currently Being Moderated

          Sorry, I didn't ask for references.  I asked for your specific results and experiences.

           

          The sad news is that most of this stuff is scurilous.  Whatever might actually be capable of doing something helpful is, unfortunately, lumped together with the crap.

           

          You've cited several sources for information about laetrile.  First, I'm impressed that a couple of legitimate, reliable medical journals are included.  That means this stuff has been the subject of some serious research.


          However, I also note that even in the more questionable resources, your bibliography didn't show anything published on the subject in over 10 years.  Some of your research is as much as over 60 years old and a large portion of it is dated at least 30 years.

           

          It seems that implies one of two things.  First, perhaps they found a reason to abandon research on the topic.   Second, perhaps laetrile has been looked at from every direction it can be and doctors still reject it.  So, while I would typically be somewhat impressed by citations from journals like the JAMA, the lack of interest in this topic for so long indicates a complete no go on the subject.

  • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
    willowbayfarm Registered Users
    Currently Being Moderated

    Hi Katesmom,

     

    I just finished reading the "Anticancer" book - I posted on the Cancer Related Issues forum about it.  I can't remember the entire title and loaned it to my Mom to read, but you can find the information about it here:  http://community.lls.org/thread/7069

     

    When I finished treatment, I did add a couple things to my regimen - mostly because standard treatment for AML in first complete remission is to do - nothing.  When my doc told me I was done with treatment, I immediately asked, "now what?"  He replied, "well, if you're a praying person, you can pray.  Otherwise, I guess you can cross your fingers."  I found such an approach completely unacceptable.  I did quite a bit of research, and ended up starting an alternating schedule of EGCG, the active component of green tea, and curcumin.  I ran both substances past my oncologist, my GP and my hormone specialist.  All ok'd my proposed program; the onc was pretty skeptical but didn't think it would hurt.  It's hard to say if it helps - I am my own experiment, and there's no control to compare me to.

     

    The other thing I had already done prior to and throughout treatment, was to have my Vitamin D level measured and I was taking Vitamin D all through treatment, with my onc's blessing.  There are a couple of threads floating around on this board about Vitamin D.

     

    With all the hawksters out there trying to make a buck by taking advantage of what they hope is the desperation of cancer patients, I was plenty skeptical of most things suggested to me, like the Noni juice a "concerned friend" tried to sell me (never heard from her again, and it's been nearly two years)...

     

    Hoping for a lifetime remission for your daughter!

     

    - WBF

     

  • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
    debwitter Registered Users
    Currently Being Moderated

    Hello,

     

    My daughter completed treatment in May 2010.  Yes, she is taking tons of stuff every day.  We have had to make major dietary changes as well due to asthma showing up.  To address the asthma we eliminated all grains and dairy.  Since this change there have been no new asthma attacks.  (Knock on wood)  We eat organic meat only.  No soda or sugary drinks, lots of vegetables, and take a full battery of the basic vitamins.  My daughter gets oxygen piped into her room at night from a medical grade oxygen condenser that I bought used through Craig's list.  There are many studies regarding the healing effects of oxygen.  She also drinks Green tea daily. 

     

    We are doing everything in our power to try and become more healthy.  I also follow Dr. David Servan-Schrieber who wrote the book Anti-cancer a new way of life.  He survived brain cancer twice.  After the relapse he did a lot of research into cancer, cancer causes and prevention.  His book and blog are wonderful.  He is a caring wonderful man. 

     

    I thought life after cancer would be a lot easier than it is.  My daughter has not had asthma since she was three years old.  After two trips to the emergency room and treatment, I had to accept a new reality.  She has been sickly with colds, tiredness, and allergies.  We are trying to address all of this naturally as I am sick to death of drugs.  Don't get me wrong it is drugs that saved her but it still is alarming the amount of drugs that are prescribed at every turn.  I am hoping all of this settles out with increased and improved health for the long term. 

     

    Debwitter

  • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
    Jamzeesmom Registered Users
    Currently Being Moderated

    My son James is now out of treatment. He just had his third birthday.  He doesn't seem to like vegetables and healthy foods as much as he did before treatment.  I'm lucky if I can get him to eat a vegetable once a week.  I have started giving him a children's multivitamin with extra C.  He doesn't like the taste of the ones that don't have extra C.  He does drink 3 cups of milk a day and / or eat cheese every day so I am not worried about calcium intake.  His oncologist didn't seem to think he needed the multivitamin but his nutritionist thought it was a good idea.

     

    I do know some parents who are giving supliments but I haven't asked which ones since my son's oncologist seemed to think it wasn't a good idea.

     

    Awesome news about being out of treatment.

     

    T

  • Re: Anyone taking supplements or vitamins or ?? after treatment finishes??
    debwitter Registered Users
    Currently Being Moderated

    We took approved supplements for my daughter during treatment and expanded on this after treatment.  We have also changed our diets. Mainly we quit all milk products due to five different books and doctors stating the link to cancer from Dairy.  We do it all. Good food, meat that is organic, no dairy at all, vitamins, exercise, Green Tea, and anything else that I can think of. 

     

    We got through cancer by stacking the cards in our favor.  My philosophy on this is as follows: cancer is a gamble. Chemo works but also destroys at the same time.  I decided to stack our cards with nutrition, good food, enjoyment, etc., anything that improved our chances plus anything that improved us emotionally counted as a card in our favor. This helped me through the dark times.  We continue with this plan now after cancer to continue increasing our odds.

     

    No supplement has ever been linked to causing cancer that I know of.  Just be sensible and choose a regimen that is simple and not overboard.  We have had good results with food based supplements and egg white protein powder. Along with a very good diet of home cooked meals with fresh ingredients.  Beware of packaged foods! 

     

    I hoped this helped. 

    Deb

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