Nutrition and supplements

[peacethruthestorm]

Does anyone follow with an integrative oncologist? I am recently diagnosed, not requiring treatment at this time and would like to optimize my health and seek out natural approaches to treatment as long as I can. I have been researching nutrition and supplements to help in this battle. Does anyone have experience with high dose vitamin C infusions, green tea, omega 3, vit D, curcumin, AHCC, etc? There is considerable science behind these that are very encouraging.

[lankisterguy Volunteer]

Hi peacethruthestorm,-

Your question has been discussed many times here, and this recent post and replies may help sort thru the advice: healthunlocked.com/cllsuppo...

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A high level summary would include:

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High dose vitamin C can be dangerous if it affects your blood pH, and/or it may encourage production of more lymphocytes - which could accelerate CLL cell production.

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Green tea and curcumin may inhibit CLL cell reproduction but achieving the effective dose levels has some risks from contaminants, liver problems, and side effects.

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Blood tests to detect low levels of Vitamin D3, Iron, Ferritin, B12 are highly recommended and then having a doctor direct the titration to maintain correct levels is important.

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We have a number of pinned posts that attempt to separate the clinically proven treatments from those that have very limited clinical data, where testimonials and anectdotes are commonly used to "prove" the benefits.

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healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

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Len

[peacethruthestorm in reply to lankisterguy]

Thank you so much for your response

[Vlaminck]

I suggest you don't take AHCC, or beta glucans. From my reading they tend to increase B cells rather than T cells as do many other "immune enhancers." We want to make sure we enhance the right immune cells.

[peacethruthestorm in reply to Vlaminck]

I read some promising and interesting studies regarding berberine and CLL. There is so much out there.... and there is a definite distinction between conventional and alternative therapies that don't seem to meld very well at the present time which is too bad. I am certainly interested to maximize my nutritional status with cleaner, more plant based, less processed foods, so will see a nutritionist regarding this. Hard to know what supplements will/can help. Currently taking Vit D, Vit C, turmeric/curcumin and a natural iron supplement in addition to probiotics and green tea.

There is a fascinating book out there called "How to Starve Cancer - without starving yourself", that focuses on a metabolic approach to starving the cancer cells using diet, re-purposed drugs, exercise and supplements.....usually in combination with conventional treatment modalities with exception of high dose chemotherapy.

I know that I am the start of this journey, but hope to keep an open mind regarding alternative methods outside the "conventional" therapies. Oncologists within the major centers have to utilize specific guidelines that have been developed through clinical trials. This is all good and I know that these trials have delivered a significant improvement in long term survival for many CLL patients. However, there are many patients that either cannot tolerate those treatments, or choose not to undergo chemo for example, that would/could benefit from alternative treatment modalities. It would be wonderful, if the 2 worlds (conventional and alternative) could work together.

[Vlaminck in reply to peacethruthestorm]

I often take berberine at night -- also good for allergies and even, slightly, sleep, but not every night--hard on liver, I believe. I also take niacinamide 500 at night -- good for sleep, and for CLL cancer -- google it. I have had actinic keratoses on my face that didn't disappear from freezing, but have now and I believe it is because I started taking the niacinamide (also called nicotamine sp? but NOT niacin, same family tho). Let me add that, from my research, BCell Leukemia, and maybe all blood cancers are different in many ways from tumor cancers, and I only take supplements that I have read specifically do some good on CLL.

[peacethruthestorm in reply to Vlaminck]

Thank you again!! I appreciate your experience with this and your response.

[Lavinia-Blue in reply to peacethruthestorm]

How to Starve Cancer, I believe she is talking about a different type of Leukemia.

[peacethruthestorm in reply to Lavinia-Blue]

Yes, she had received harsh, high dose chemo for stage IV cervical cancer (lung metastasis) and in that process developed a precursor to a myeloid leukemia. She believes you can "attack" your specific type of cancer by understanding what that type of cancer cell thrives on (metabolic processes) and how it evades destruction. So, the approach can be applied to different cancers. I am still sorting all of this out and of course would need professional help to identify all of this and she stresses the importance of working with a doctor. Finding a doctor interested and/or willing to investigate this for/with you is the struggle. She also discusses how other common sense changes can help in the battle to stifle cancer, ie. dietary, exercise etc. It is a lot to navigate by yourself, hence seeking out professionals to help. Thank you for your response.

[peacethruthestorm]

Thank you

[SukhinoBhavantu]

Do you have any idea about SPIRULINA and its effective I think

[janvog]

MAYO mentioned CoQ10 for blood pressure and heart health. Some mention health blogs suggest unfiltered, unpasteurized apple cider vinegar seems for blood pressure and other problems. My hematologist approved both for me. I have CLL Rai4, but good CBC and CMP. After 6 month' the CoQ10 and the vinegar seem to have lowered my systolic blood pressure by 5 points and reduced the A1c from 5.5 to 5.1. It might be interesting to learn what the Greeks found important in their consumption of vinegar. The Spartans' meal consisted of pork, blood and vinegar.

[AussieNeil Administrator in reply to janvog]

If you are neutropenic or at risk of becoming so, you should avoid anything unpasteurised. Remember, Pasteurisation is the process of using mild heat to eliminate pathogens and extend shelf life. With a low neutrophil count, your body may not have the ability to counter the pathogens in the unpasteurised product and you can end up very ill.

Neil

[janvog in reply to AussieNeil]

Thank you for this important information and also the service to this blog ! Possibly I am not neutropenic because my hematologist allows it, and his PA who constantly concentrates on cancer patients also agrees to it. Possibly organic apple cider vinegar does not contain pathogens because its development process eliminates pathogens. This in contrast to other unpasteurized products.