[sachbarnesParticipant]

Hi all,

Dad has been having investigations for the last 2 months on his myeloma. They thought Smouldering but now its progressed to MM.
For the last 2 months we have been taking 1.5g Quercetin, 8g Curcumin C3 Complex, 2g fish oil, and 1g Ashwagandha KSM-66 root for their anti-myeloma properties evidenced in various trials.

Dad started induction treatment on VTD last week, and we have temporarily stopped all the Supplements until we know of any interactions which could inhibit his drugs. I have also read some testing that Quercetin complements Dex, Curcumin/Fish Oil complement Bortezomib, and Curcumin complements Thalidomide/Lenalidomide. (As long as not taken at the same times)

However I know that Curcumin and Fish Oil for example are natural blood thinners, and he has been prescribed Abixaban because some of VTD/VRD can cause clotting side effects (maybe the Thalidomide/Lenalidomide).

We are waiting on the pharmacy dept at our haematologist to get back to us, but wondering if anyone has been taking any of these Supplements with doctors blessing? Maybe the thinning properties are too small to be a factor for instance. We would hate to stop using the Supplements now that treatment has started, but obviously dont want to impair the effectiveness of any of his drugs.

Thanks

Sach

[mulberryParticipant]

Hi Sach, I recognise your learning curve!
My myeloma treatment was delayed May -Aug 2018 as I sought a second opinion. During this time I started taking 8g curcumin, quercetin and fish oil using the protocol used by Margaret’s Corner blog & Dienneke Ferguson. My ‘new’ haemo-oncologist was aware I was taking it & was surprised that my paraproteins dropped from 43g/l to 30g/l 4 weeks after I started taking the supplements. I was not taking any myeloma drug, the only drug I was on was levothyroxine (for hypothyroidism,diagnosed along with the myeloma) He asked me to watch & wait. Over the next month my paraproteins went to 38g/l then to 35g/l. I was too worried about developing bone lesions (which I didn’t & don’t have) to continue and asked to start VRd. In hindsight it would have been interesting to wait,& I now absolutely trust him, but that’s hindsight! I’ve gone on using the same supplements since, except for 3 weeks immediately after SCT. I also take vitamin B12 (prescribed) D (now prescribed) & K.
For a while I did not take blood thinners but currently take low dose asprin again. The antiinflammatory effect of curcumin has helped my osteoarthritis and Hashimotos, I’ve had no flare ups of either since. (I had symptoms which were later diagnosed as Hashimotos thyroid disease- an autoimmune problem- when I was diagnosed with myeloma)
I’ve read that there may be 12 subtypes of myeloma, mine definitely seems connected with autoimmune issues. It may be that curcumin is only helpful for certain subtypes?
I did not get a Complete Response (get into ‘remission’ during induction) but went from 60% bone marrow infiltration to less than 2% . I had a Complete Response to the SCT however- within 37 days.
During induction I changed my diet to no refined sugar, mostly wholefood, lots of veg. This has gradually slipped over lockdown & I’m currently readdressing diet & reinvestigating supplements so your post is very useful.

[sachbarnesParticipant]

Thanks so much, very helpful. Yes I really dont want dad to stop taking the Curcumin which will also help with his Osteoporosis. But worried they will say its too risky while on the Apixaban blood thinner.

Defo check out Ashwagandha Root Extract, as it is known to help with potential Peripheral Neuropathy/nerve pain. So could be a good addition while you are on Lenalidomide maintenance. KSM-66 is a specific extract that just uses the refined Root.

Tx

[susantrParticipant]

Hello Sach

I have been taking many supplements since approximately 2 years post SCT. I wrote a comment about it back in 2018, gaining insight from Margaret’s Corner and the book How to Starve Cancer. I now follow the Myeloma metro map. I firmly believe they are helping me along with a diet of fruit, vegetables and salad, no processed foods, meat and only a little dairy. I take 8g of Curcumin a day, as well as Quercetin, ashwagandha, boswellia, MCP, R-Alpha linoeic Acid, Melatonin, several MRL mushroom extracts, Berberine, omega 2, D3, Vitamin K, astragalus, wormwood, inasol, IP6, black seed extract, cCoQ10, loratadine, liposomal vitamin C, as well as several cups of green tea a day. If you type in a google search the name of the supplement + Myeloma + pubmed you will see all the articles written about them and their anti Myeloma affects. I am also on the COC protocol of Metformin, Atorvastatin, Mebendazole and Doxycycline. I am 100% committed to this. Do the research. Good luck.

[sachbarnesParticipant]

tx both. there are so many benefits to natural supplements, I just hope our haematologist lets us continue while on treatment.

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