DOES ANYONE TAKE MUSHROOM SUPPLEMENTS?
I would like to find a few "heavy hitting" supplements to help my husband fight this. We tried curcumin 2 years ago and his numbers increased so he is wary of supplements now. So far he's only gone thru one round of chemo and a sct 2 years ago. He's on no drugs or supplements, all hes changed about his diet is he now drinks lots of water daily. He continues to visit the gym for weight lifting and jogging. I really Id LOVE for him to follow David's course with Burzynski but we cant afford that. What are your views on the reishi,maitake,shitake blends? His numbers are slowly increasing and I feel its urgent that I figure out something fast to decrease them. ANY IDEAS??? (ps. Hi David!!) Happy New Year to you and yours my friend!!
Thanks!
Tammy McEwen(wife and caregiver to Eric)
Hi Tammy-
We've talked about antineoplaston therapy before so I won't go into it all again. However, I've got to mention one tiny issue that made me think of Burzynski the other day. An op-ed piece in the Wall Street Journal said this
"A recent study published in the Proceedings of the National Academy of Sciences found that these approaches may even change gene expression in hundreds of genes in only a few months. Genes associated with cancer, heart disease and inflammation were downregulated or "turned off" whereas protective genes were upregulated or "turned on."
Burzynski characterizes the effect of antineoplaston therapy as "turning off" bad genes and "turning on" good genes.
Af for mushroom extracts, I do not currently take any. Though I've read many articles and studies about the immune enhancing effects of these therapies.
David
Hi
My last chemo failed, and as a result I quickly developed a number of tumors, including one on the jaw. The radiation damaged the lining of my
Mouth. I am on a liquid diet now, waiting for my mouth to heal. it is almost
Impossible to swallow pills, so I can not tolerate my suppliments.
Can anyone suggest something That might promote mouth healing? Anything.....something I can swish around, or keep in my mouth for a
Period of time??
Thanks For Any Helpful Ideas in Advance
Kevin-
I cannot speak from personal experience on this but I have read many posts about swishing vitamin E around in your mouth. Some vit. E supplements are liquid capsules and if you can get the liquid out and put it in your mouth you can swish it around for awile.
Hope this helps-
David
Hi My last chemo failed, and as a result I quickly developed a number of tumors, including one on the jaw. The radiation damaged the lining of my Mouth. I am on a liquid diet now, waiting for my mouth to heal. it is almost Impossible to swallow pills, so I can not tolerate my suppliments. Can anyone suggest something That might promote mouth healing? Anything.....something I can swish around, or keep in my mouth for a Period of time?? Thanks For Any Helpful Ideas in Advance
Ive found peroxide to be very effective in healing canker sores. I suggest swishing and gargling peroxide in the mouth several times daily..it has properties that promote healing and keep bacteria at bay. Hold it in the mouth for as long as possible. I hope this helps you.
I would also suggest Aloe Verae. Maybe gel, or else liquid.
In case you missed it, I also did not have success once with very large amounts of curcumin..8 to 12 grams per day. I was one of the few doing Cybor-D at that time.
This is now a common frontlline therapy for mm patients--dex, cytoxan, and Velcade. The problem is that curcumin is antagonistic with cytoxan. So obviously this did not help that therapy which eventually failed after 7 months.
However, this does NOT mean that curcumin is not synergistic with other mm drugs--such as thalidomide, and less, with Revlimid--so I am taking it again..outside of meals with both bioperin and a coconut extract known as monolauren..both of which should make it enter my system better.
However, with other supplements that I do not know about if they are synergistic or antagonistic..I would not use them right now since my treatment is already working pretty well.
Two examples would be reseveratrol and mushroom supplements--or any type of Beta glucans. There is no doubt they have a positive effect on some mm patients..but we are all with different subtypes and different therapies. so it is just hard to know.
I hope you find this helpul.
Alex Maas
a.maas@cox.netg
No SCT now or ever
Patient of mm specialist Dr. Berenson--who is too controversial for acor list because of his stand on Zometa and his hard-hitting words for Celgene about its pricing policy for United States thalidomide.
Currently on Revlimid at 25 mg per day
Clarithomycin ER 1000 mg every day (two tims 500 generic equivalent to Biaxin XL)
Dexamethassone 5 days on 10 days off at 5 mg per day
Once a month Zometa (3 mg I think) infusion timed to be with one of the dex times--effect is highly synergistic.
And yes, I have had ONJ..last year..I actually had ONJ, according to my very good dentis, and it went away by itself..I never even noticed it anymore than having a short-lived canker sore or perhaps a mouth sore from eating a pizza that was too hot.
And my number are the best they have been in 3 years.
I had to add..that Dr. Berenson only told me to add the Biaxin to the Revlimid and 40 mg of every other day 40 mg medrol I was taking.
And I know that others would never take so much dex--it is a lot of dex, but I really want to be in remission..something I have not had for four years.
But I can handle it pretty well..and take a generic version of Klonapin called clonazapiem that is an anti-anxiety drug in the class of drugs call benzadiapense..such as Ativan, Xanac,and Abilify--all the drugs can be addictive for some..but I only take 1 mg the last dex day to deal with the dex-induced anxiety issues and it lets me handle this.
Of course, muscle wasting, long term eye-damage and all the other side effects of so much dex cannot be good for me--but neither will be dying of myeloma
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