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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
I'm Confused About "treatment" Plans That Admittedly Don't Work In The End. W
A MyMyelomaTeam Member asked a question 💭

Why go through all the agony of chemo and radiation if the eventual outcome is you aren't around to enjoy life? The idea that there is no other alternative is ludicrous
Your body rebelled against what it saw as too much to bear, whether from stress, pathogens, unhappiness, poor eating habits, no exercise- whatever. If you screwed up, FIX IT!! Don't get into the 'poor me' frame of mind and think this is it. It isn't. Change everything that isn't working for you. Your body will answer the call… read more

posted January 7
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A MyMyelomaTeam Member

Continued...

I'm in this battle of Buying Time - using C3 Curcumin, very good nutrition and plenty of exercise to keep this monster at bay - hoping for a permanent cure And enjoying a very good quality of life in the meantime. It would have been very easy to accept getting around with a cane - I'm sure if I had, for myself, it would have been the beginning of never getting better. It's taken me all this year to finally get off gabapentin and Lyrica - I can already tell that a light fog has been lifted. The only remaining item to phase out will be my 5mg - oxycodone, 4 times daily (bad neuropathy). I've recently handled some days with only 3 oxy doses - hope to ease into that and maybe twice a day in a few months. I start acupuncture on Monday for 6 treatments - Hope it helps too.

The last 14 months have been my Hardest battle ever, but I'm well on my way - in Complete Remission and being Monitored without any MM Meds. This year's imaging (last two months) has found a new lesion on my left shoulder bone - No MM activity. Its a reminder that I'm in a never ending story that needs careful attention and monitoring.

All the Best - Larry2

posted January 7
A MyMyelomaTeam Member

Sara4 - WebMd says chlorine dioxide is unsafe except in extremely small amounts to disinfect water.

What amount of chlorine dioxide do you consume, in what form and how often?

Fenbendazole seems to be for killing ring worms in puppies and is not FDA approved in any form or amount for human consumption. Are you consuming this product or something different? If this product, how much and how often?

What specific biotoxin binders (brand or product name) do you use, in what amount and how often. For which toxin are these binders targeting?

Thank for the details - Larry2

posted January 8
A MyMyelomaTeam Member

I am a wee bit tired of 'tests'. It's good to be informed, but way better if you can fix the root cause of goofy test numbers. There is much research showing parasites in all cancer cells. You can see them with an electron microscope. More enter our systems every day. Some are harmful some are not, but getting them out is a major step to getting your body back. Chlorine dioxide and Fenbendazole work really well to remove these pathogens, and Biotoxin binders are helpful too. All are inexpensive and available on-line. Amazing how much better you can feel without all that garbage in your system.

posted January 8
A MyMyelomaTeam Member

@A MyMyelomaTeam Member
@A MyMyelomaTeam Member

There is major interest in the gut microbiome.
With regard to many different diseases, including MM.

Some years back, I saw a documentary on a scientist who went to Africa and lived with an isolated indigenous Pygmy group, to study their diet and gut bacteria.
Like all brave scientists, he went out on the edge,
and had his own gut fecal-transplanted with a Pygmy sample, pre-tested for hepatitis etc.
I cannot remember the outcome.
I roughly recall the University Calif San Diego also had gut research going on... maybe that Pygmy scientist was from UCSD, I dont know.

The facebook group MM Naturopath addresses the gut frequently.
There is lab testing available.

posted January 8
A MyMyelomaTeam Member

Hi Sara4 - I agree about helping yourself once you have a leg to stand-on. When they found my MM (entirely my fault that it had progressed as much as it did - I found older annual Labs that from 4 years prior (5 years ago) to being diagnosed, showed a just above normal serum protein and my GP at the time did not catch it. Then I went 4 years without an annual (my fault) until I had a fractured L4 that placed me in the hospital - finding 80% bad marrow.

I needed the DarzalexFasPro and RVD to quickly reverse it and then I got off All MM Meds as soon as I could and without an SCT.

I had a chance to see my oncology Nurse two days ago (no longer under her care - just getting routine Labs). I asked her about another case that responded as quickly as I did when I was getting treatment. She said there were 4 of us (I expect at different levels) and 3 of us responded very quickly to DarzFP + RVD and the 3 of us then Did Not get SCTs. In my case, it was my choice, with guidance from my 2nd Doc. Apparently the other two were suggested by their SCT team to Not Do So.

I do strongly believe that when you can Not get to Normal Labs, that an SCT is a very important next step (until we see another breakthrough). SCTs are very difficult at best and can be bad as well. My PT Doc tells me she's treating a MM patient that had a SCT and she says he's Just Not Right - in a fog, in a daze - maybe he's still on maintenance meds as well but he's somewhat out-to-lunch, lights are out and nobody's home - that's no way to live.

This last July, I spent 3 months - 7 days a week at a PF gym to rebuild my strength from needing a crutch to firmly on my feet again and I've been at an indoor golf range for 2 months now - 4 days a week, 2 hours per, putting my golf game together again - I intend to be golfing in the spring.

We always ate well enough but I'm getting stricter about what I'm eating and trying to learn more about nutrition. No telling if I'll get to being a vegan but I've already removed my evening dish of haagen-dazs ice cream (which I miss dearly) and candy and sweat treats - more apples, banana, sugar free juices, nuts, and salads fill that void nicely.

As much as I wish I knew for sure that a all natural solution would pull us from the brink, for many once you know you have MM, getting some quick help to reset your body is a good thing - then get off these poisonous meds and fight back as quickly as you can. We Are Being Overmedicated in the sake of the "Standard of Care". My Doc and Nurses wanted me on Revlimid, Velcade, and Dex for years of maintenance. It took me a few months but I finally said No. I agree with the 12 weeks of Induction. I wish the next two months of Maintenance that had Dex and Rev didn't happen - after that two months, I said No to those two. Then two months more of Revlimid and I tested MRD- at 10 -6 and I said - No More.

posted January 7

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