supplements and chemo

scared99
scared99 Member Posts: 72
My mom starts chemotherapy tomorrow. I believe her schedule is one day every other week. She finished radiation for the sacral tumor last week and spent most of the weekend in bed. She said her stomach was burning and the doctor told her this was a side from the radiation and it will subside eventually. I am curious if any of you have any advice on supplements that will help with the sides from chemo ? I have purchased her melatonin, ginger root and milk thistle and I am open to any suggestions. She is a little nervous about chemotherapy. Her sister/my aunt just finished 8 months of chemotherapy for her colon cancer and she handled it pretty well. Her main complaint was the fatigue and some skin problems.
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Comments

  • dmj101
    dmj101 Member Posts: 527
    I am always cautious to take
    I am always cautious to take anything while doing chemo..
    Please check with her doctor prio to using any supplements..
  • steveandnat
    steveandnat Member Posts: 886
    i dont
    Iw don't take any supplements but I know people who do.
  • geotina
    geotina Member Posts: 2,111
    Supplements:
    Some are ok and some are not while on chemo. Always run it by the oncologist befor
    making changers. Like everything, there are different views on the subject so it is best to be on the safe side before starting anything new.


    Take care - Tina
  • tanstaafl
    tanstaafl Member Posts: 1,299 **
    developing new sources
    There are naturopathic doctors that specialize in cancer treatment, some perhaps have studied 5 years in ND school, and have more research and thought invested in these questions. In non-ND states you may be looking for MDs and DOs that have investigated therapeutic nutrition for some years under a variety of names. Health food stores with business cards or personal references could be a starting point to finding doctors of various natural medicine orientation. Caveat emptor, some providers might not be ones that I would choose.

    Such support may overcome the lack of training, time and interest that more cosseted mainstream doctors have about supplements appropriate in different situations. Then consider to share their recommendations with us for comment.
  • janderson1964
    janderson1964 Member Posts: 2,215
    I have always used
    I have always used supplements for the past 6plus yearz of chemo but always gave my oncologist a list of what i was using to be sure.
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    Supplements
    I'm very cautious about taking any supplements because I just don't know what sort of interaction they can have with the small drug store I swallow every day. My daughter sent me some info about graviola and I was going to start using that until I read that people with and nerve tissue problems should not take it. Since chemo causes neuropathy, I consulted with my onc and we agreed not to take a chance.
  • steved
    steved Member Posts: 834
    supplements
    I have never really taken a lot but am not averse to the idea and am sure some help some people. One difficulty I have with them is the assumption that because they are natural they are safe. The opposite may be true as almost none have gone through the testing registered medicines do and they rarely come with an accurate list of side effects like meds do. The do have side effects, they can be toxic and theyy can interact with your other meds and do harm.

    So the bottom line (as is true in all this) is that knowledge is your greatest weapon. Learn about them, talk to your team about your thoughts and listen to sensible people on this group (there are many who have done teh investigating for you and are great sources of knowledge).

    It is sometimes stated that this board is not receptive to people who take alternative pathways in managing their cancer or even those that use complementary techniques aliong side conventional meds. I don't think that is true and in fact there are many here who do so and swear by it. Finding the right balance of different approaches to managing this illness, built on a solid base of knowledge will really empower you to feel you are doing all you can in this battle and that is all any of us is looking for.

    steve
  • peterz54
    peterz54 Member Posts: 341
    steved said:

    supplements
    I have never really taken a lot but am not averse to the idea and am sure some help some people. One difficulty I have with them is the assumption that because they are natural they are safe. The opposite may be true as almost none have gone through the testing registered medicines do and they rarely come with an accurate list of side effects like meds do. The do have side effects, they can be toxic and theyy can interact with your other meds and do harm.

    So the bottom line (as is true in all this) is that knowledge is your greatest weapon. Learn about them, talk to your team about your thoughts and listen to sensible people on this group (there are many who have done teh investigating for you and are great sources of knowledge).

    It is sometimes stated that this board is not receptive to people who take alternative pathways in managing their cancer or even those that use complementary techniques aliong side conventional meds. I don't think that is true and in fact there are many here who do so and swear by it. Finding the right balance of different approaches to managing this illness, built on a solid base of knowledge will really empower you to feel you are doing all you can in this battle and that is all any of us is looking for.

    steve

    definitely yes to supplements
    but be sure to educate yourself.

    start with shifiting to a predominantly plant based diet. this will add nutrients and remove a lot of garbage that is part of the standard American diet. Studies suggest a plant based diet improves outcome as does modest physical activity and avoiding obesity.

    supplements my wife's ONC recommended are a multi-vitamin and milk thistle. she was also OK with several plant extracts which have some level of research to suggest they help turn down the signal pathways which promote cancer cell growth (quercetin and resvertral for example). This is even more important for those who are K-ras mutated, which is about 40% of mCRC patients. Know your K-ras status. Curcumin is anouther worthwile supplement which is undergoing trials, but it is not very well absorbed so look for the a good brand like that sold by Life Extension...if you can use the spice tumeric even better than curcumin from which it comes.

    Our Onc also favors adding lots of mushrooms (shiitake) in my wife's diet. I also provide her with mushroom supplements for time when she does not eat them.

    I started my wife on RDA levels of calcium and magnesium due to research suggesting it woul help prevent or mitigate neuropathy from oxaliplatin.

    One research paper indicated that chemo patients are often very deficient in vitamin D, so this is also something to consider. a vitamin D test is cheap and easy so request it and have it checked later.

    these are just some things you should think about and educate yoruself on. Google scholar and Pubmed are good research tools. Oncologists vary in their opinion about different supplements and in my opinion don't have the time or maybe the inclination to stay current on all the various studies, which is why I try to look at what the original research says and then let our oncologist know. so far she has been fine with everything simply cautioning not to overdo the dosage.

    good luck

    peter
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 **
    Supplements
    You should always contact the doctor (onc.) before taking any supplements as some can interfer with the treatment. Some won't even let you take anything extra.

    Kim
  • tanstaafl
    tanstaafl Member Posts: 1,299 **
    steved said:

    supplements
    I have never really taken a lot but am not averse to the idea and am sure some help some people. One difficulty I have with them is the assumption that because they are natural they are safe. The opposite may be true as almost none have gone through the testing registered medicines do and they rarely come with an accurate list of side effects like meds do. The do have side effects, they can be toxic and theyy can interact with your other meds and do harm.

    So the bottom line (as is true in all this) is that knowledge is your greatest weapon. Learn about them, talk to your team about your thoughts and listen to sensible people on this group (there are many who have done teh investigating for you and are great sources of knowledge).

    It is sometimes stated that this board is not receptive to people who take alternative pathways in managing their cancer or even those that use complementary techniques aliong side conventional meds. I don't think that is true and in fact there are many here who do so and swear by it. Finding the right balance of different approaches to managing this illness, built on a solid base of knowledge will really empower you to feel you are doing all you can in this battle and that is all any of us is looking for.

    steve

    the march of progress...
    Alternatives and complements like TCM, supplements, protocols with off label and foreign drugs have slowly become more acceptable for discussion at CSN for various reasons over the last several years, which sometimes used to get people in hot water or banned outright.
  • Sonia32
    Sonia32 Member Posts: 1,071
    Hugs
    Talk to your mums team if they are ok with it, go for it.
  • herdizziness
    herdizziness Member Posts: 3,624
    Supplements
    Some are ok to take with chemo, some are not. So as others have said, the wise thing to do before taking of supplements is to ask your mom's oncologist. You do not want her to be taking something that will have an adverse affect on her with the chemo.
    Be careful not to go overboard as some do, in that case you could be doing the body more harm then good, but as long as you are checking with the oncologist all should be good. Everything in moderation. ;)
    Winter Marie
  • dmj101
    dmj101 Member Posts: 527
    Doc_Hawk said:

    Supplements
    I'm very cautious about taking any supplements because I just don't know what sort of interaction they can have with the small drug store I swallow every day. My daughter sent me some info about graviola and I was going to start using that until I read that people with and nerve tissue problems should not take it. Since chemo causes neuropathy, I consulted with my onc and we agreed not to take a chance.

    exatly my neighbor was
    exatly my neighbor was telling me about this sup gravolia and then said don't drink too much water with it at then it can lead to parkinsons.. well that was enough to stear me away..
  • peterz54
    peterz54 Member Posts: 341
    dmj101 said:

    exatly my neighbor was
    exatly my neighbor was telling me about this sup gravolia and then said don't drink too much water with it at then it can lead to parkinsons.. well that was enough to stear me away..

    educate thyself
    one experience with hearsay shouldn't sour you on supplements in general. it makes sense to be cautious and skeptical, but I think it is also a huge mistake to discount all supplements because of false claims about some. And even a bigger mistake to advise anyoone else to ignore them considering research to the contrary. There is just to much positive published research on a number of plant extracts to ignore, and I'm refereing to research published in professional journals and replicated at the NIH Libraray of Medicine, not claims by pill pushers.

    As I have mentioned already, a number of supplements (plant extracts) have undergone trials and been the subject of research over the years and it is clear to me (and some oncologists/researcers) that they are of value, not as replacements to standard therapy but to augment therapy or to just help with one's health in general.

    but supplements aside, just switch to a plant based diet if nothing else - berries, nuts, colored vegetables.."research" supports this as well
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    great question
    i like your username, alot to be scared of when doing chemo for the first time.

    so i started out juicing the day i was diagnosed and then a few supplements.

    as time went by the list of supplements got longer.

    the easiest definitive and credible summary of supplements for colorectal is the life extension website.

    if you want to do it yourself, then welcome to the supplement team. I take alot of supplements each day and some would say thats an understatement. Now I have researched my doctors advice and believe in the merits of my program just for me. Its been tailor made to my biology.

    so a supportive ND is an essential starting point even for someone with knowledge and experience becuase an ND offers clinical experience with supplementation as well as advice regarding cost effective suppliers. at least mine do. value for money has always been essential.

    their are so many areas where appropriate supplementation and diet can help on the colorectal journey. i hope your mothers is a long one.

    where do you start fish oil and vit D3, but how much, where do you get it, when do you take it.

    as an example my fish oil supplementation has been increased as a result of doing a fatty acids blood profile. not alot, but it warrantted a change. I know enough about the complexity of our biology to value expert opinions from doctors, of course the discussions here are helpful as well. often as a starting point for discussions with doctors.

    i don't both worrying my onc with my supplement regime, she just looks at my near perfect blood results and my rising cea marker with a perplexed smile.

    so read life extension for a crash course, we did a big post here on it months ago.
    tumeric and milk thistle are also great basics, but how anyone survives without broccoli powder i don't know.

    Mind you this is just what i have done for me, and spent a small fortune on it the last 2 years. Some go fine without any supplements, they may have gone better with them or worse if they were inappropriate. so if you embark on extensive supplementation I would get expert care and supervision in that regard. very few oncs are skilled in supplementation and the biologicial pathways of advanced supplmentation. i would seek out an expert ND if thats where you mum wants to go.

    goodluck,

    hugs,
    pete
  • tanstaafl
    tanstaafl Member Posts: 1,299 **
    avoiding over doo doing it
    It's pretty clear that the average CRC chemo patient more likely has vitamin and nutrient deficiencies, even if it is not agreed exactly what those deficiencies are, and how to best resolve them.

    To me, the biggest problem with supplements is that they are underspecified, that is, not all "vitamins" are the same by a long shot. Sort of like mistaking an 85 Yugo for a BMW, and saying all cars are crap.

    In vitamin B complex pills and the common multivitamin formulas, folic acid with any 5FU based chemo is simply the wrong vitamin B9, even evil. *No folic acid* is the best amount - rather L5MTHF (levo 5-methyltetrahydrofolate) in regular quantities, from natural sources (we use livers), or other natural folates from juiced plant leaves appear to be about the best we could do, as well as the necessary "megavitamin" leucovorin prescribed in my wife's chemo. There are premium multivitamins with L5MTHF, but we just formulate our own vitamin mix anyway for higher, chosen quantities.

    This type of "Yugo" specification problem can be applied to common vitamin forms (industrial substitutes) for vitamins A, B6, B12, D, E and K, and even change somewhat with the chemo, and the person.

    Once the molecular specification problem is solved then vitamins and nutrients may be used to enhance some kinds of chemo, help control cancer, and avoid common chemo side effects. Some vitamins we try to keep closer to RDA (vit A), others 20-200x RDA, and others we've kept below 1-4,000x RDA while on our chemo.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    tanstaafl said:

    avoiding over doo doing it
    It's pretty clear that the average CRC chemo patient more likely has vitamin and nutrient deficiencies, even if it is not agreed exactly what those deficiencies are, and how to best resolve them.

    To me, the biggest problem with supplements is that they are underspecified, that is, not all "vitamins" are the same by a long shot. Sort of like mistaking an 85 Yugo for a BMW, and saying all cars are crap.

    In vitamin B complex pills and the common multivitamin formulas, folic acid with any 5FU based chemo is simply the wrong vitamin B9, even evil. *No folic acid* is the best amount - rather L5MTHF (levo 5-methyltetrahydrofolate) in regular quantities, from natural sources (we use livers), or other natural folates from juiced plant leaves appear to be about the best we could do, as well as the necessary "megavitamin" leucovorin prescribed in my wife's chemo. There are premium multivitamins with L5MTHF, but we just formulate our own vitamin mix anyway for higher, chosen quantities.

    This type of "Yugo" specification problem can be applied to common vitamin forms (industrial substitutes) for vitamins A, B6, B12, D, E and K, and even change somewhat with the chemo, and the person.

    Once the molecular specification problem is solved then vitamins and nutrients may be used to enhance some kinds of chemo, help control cancer, and avoid common chemo side effects. Some vitamins we try to keep closer to RDA (vit A), others 20-200x RDA, and others we've kept below 1-4,000x RDA while on our chemo.

    my favourite when on chemo
    The issues with vitamin and nutrient deficiencies is often leaky gut, or a reduced ability to absorb the supplements that we ingest. So a gut support supplement, to help the stomach and intestines is a must in my books. So glad my ND recommended this after my 3rd round of chemo, it really helped minimise my diarrhea problems.

    I am back on it now! Just for all times sake!

    Most good NDs will test for leak gut. They will also probably recommend a really good probiotic. I would look at progurt if i went back onto chemo, its had the best results for me, but its very expensive, other cheaper probiotic options are available.

    http://www.gutmatters.com/nutritional-and-herbal-supplements/digestive-support-lower/Gut-Relief

    Now from the above link

    Gut Relief Compound contains a significant dose of Glutamine which is important in maintaining normal structure and function of your gastro-intestinal tract. Aloe Vera and Slippery Elm have a healing and soothing effect on your gut mucosa. Gut Relief Compound also contains a form of highly bio-available Turmeric to aid in the fast relief of gastric inflammation and gastritis.

    Gut Relief Compound may help to;
    repair the gastric mucosal lining relieve gastric inflammation
    reduce and repair leaky gut syndrome
    relieve symptoms of gastritis
    relieve symptoms of mouth ulcers
    relieve gastric conditions caused by Helicobacter pylori infection
    Quantity: 150g

    Contains:
    L Glutamine
    Quercetin
    Glucosamine hydrochloride
    Aloe barbadensis leaf ext.
    Slippery Elm bark powder
    Guar Gum
    Petin
    Sodium phosphate dibasic
    Peppermint oil
    Curcumin

    This type of supplement gave me considerable benefit while on chemo and is pretty cheap in the scheme of things.

    hugs,
    pete
  • abackhou
    abackhou Member Posts: 77
    Waste of money
    Why waste money on supplements? I for one will not....
  • peterz54
    peterz54 Member Posts: 341
    abackhou said:

    Waste of money
    Why waste money on supplements? I for one will not....

    fine for you
    but I think it's s disservice be dismissive about this in the light of much contrary evidence when the people who are asking about supplements are in a life and death struggle.

    I am pro-supplement but I do not advise anyone to take my word. I speak up only because there needs to be a counterbalance to the naysayers and hope to convince a few people to investigate the issue themselves using reliable sources of information.

    Do your own research (it's not time consuming) at PubMed (NIH library of Medicine, and through google scholar and get familiar with the original research. And then discuss with your oncologist, as my wife and I have, while keeping in mind that they might not be aware of all the latest research and clinical trials.

    Also, I would recommend firstly, before going to supplements, that anyone who is ill scrap the american diet and move to a predominantly plant based diet and if you have the energy exercise modestly and keep one's weight in the normal range - this is all supported by research and advocated by many oncologists, and retrospective research indicates that people who do these things have markedly better outcomes.
  • tanstaafl
    tanstaafl Member Posts: 1,299 **
    abackhou said:

    Waste of money
    Why waste money on supplements? I for one will not....

    fortunate
    Andrew, we think our lives or wives (ahem) are worth it. Most people have to rely on others' opinions about medicine and supplements. Thanks to advances in medical science, laboratory technologies, (neo)adjuvant treatment with clinical observation and biomarkers, that is changing. We have been able to utilize some of these, to predict and directly measure the impact of treatments, including the "supplements".

    With "supplements", one can manipulate the same molecular pathways as do "targeted drugs" but with less damage and side effects. And no having to beg the insurance company or doctors, or wait. This allows more molecular pathways to be treated with more active substances with less toxicity for longer time periods. And with less damage to the family and national budget.