low platelets forever?
Comments
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Yes
I've got permanent damage and it was finally confirmed by my oncologist on Thursday after almost three years. My counts (red/white) probably will never go in the normal range, my platelets are normal though. The damamge to me was caused by the radiation. Sorry to hear that about you Pepe - it stinks.
Kim0 -
pepeAnnabelle41415 said:Yes
I've got permanent damage and it was finally confirmed by my oncologist on Thursday after almost three years. My counts (red/white) probably will never go in the normal range, my platelets are normal though. The damamge to me was caused by the radiation. Sorry to hear that about you Pepe - it stinks.
Kim
im sorry to hear you are having problems.back in 2009 when i had chemo when my platlets go low i would get more kind of like a blood transfusion.as far as permanent damage i cant be of any help.take care...Godbless...johnnybegood0 -
Upjohnnybegood said:pepe
im sorry to hear you are having problems.back in 2009 when i had chemo when my platlets go low i would get more kind of like a blood transfusion.as far as permanent damage i cant be of any help.take care...Godbless...johnnybegood
up0 -
beta glucans
My wife uses a PSK-like clone to increase her platelets, WBC and RBC. The active ingredients in PSK are categorized as beta glucans. There is laboratory work that suggests that some beta glucans stimulate the precursors to bone marrow formation in animal models. Beta glucan products appear to vary greatly by source and brand, standardization appears to be a headache even for the manufacturers.
My wife is not fond of taking "PSK" (the particular JHS mushroom extract is "Coriolus Super Strength" from LEF), since they work best or most efficiently on an empty stomach, maintaining daily compliance is an ongoing effort. But they really do increase her platelets, WBC, RBC at 2 - 3 grams per day. Her platelets and WBC nose dive when she slacks off too much. I've seen Japanese papers with cancer patients' use of up to 6 grams per day of PSK. $$$
Recently she's started trying the BetaRight WGP beta glucan licensed/manufactured by Biothera, and says she actually feels better taking them, that they are more agreeable. However because we're in the middle of ramping up her supplies and rate of intake, it will be another month or two before I start to have more CBC data.
The current plan is to try 2.4 gram "PSK" (40% beta glucan) and 1-2 grams BetaRight WGP (80% beta glucan), to see what we get. Not sure whether she'll take it all as caps or we'll have to dilute part in the vitamin shake. We previously tried adding a generic PSP (chinese proteo-beta glucan) with her PSK that increased WBC and platelets at the expense of RBC.0 -
Thank you so much transtaafl!tanstaafl said:beta glucans
My wife uses a PSK-like clone to increase her platelets, WBC and RBC. The active ingredients in PSK are categorized as beta glucans. There is laboratory work that suggests that some beta glucans stimulate the precursors to bone marrow formation in animal models. Beta glucan products appear to vary greatly by source and brand, standardization appears to be a headache even for the manufacturers.
My wife is not fond of taking "PSK" (the particular JHS mushroom extract is "Coriolus Super Strength" from LEF), since they work best or most efficiently on an empty stomach, maintaining daily compliance is an ongoing effort. But they really do increase her platelets, WBC, RBC at 2 - 3 grams per day. Her platelets and WBC nose dive when she slacks off too much. I've seen Japanese papers with cancer patients' use of up to 6 grams per day of PSK. $$$
Recently she's started trying the BetaRight WGP beta glucan licensed/manufactured by Biothera, and says she actually feels better taking them, that they are more agreeable. However because we're in the middle of ramping up her supplies and rate of intake, it will be another month or two before I start to have more CBC data.
The current plan is to try 2.4 gram "PSK" (40% beta glucan) and 1-2 grams BetaRight WGP (80% beta glucan), to see what we get. Not sure whether she'll take it all as caps or we'll have to dilute part in the vitamin shake. We previously tried adding a generic PSP (chinese proteo-beta glucan) with her PSK that increased WBC and platelets at the expense of RBC.
been very helpful !.
Hugs!0 -
more detailspepebcn said:Thank you so much transtaafl!
been very helpful !.
Hugs!
You're welcome.
I might add a few clarifications, and background for others.
1. wife has been on this daily immunochemo, and lots of other supplements for ~16 months. We had been fighting erosion of CBC results until starting the PSK after a few months later.
2. her super vitamin-milk whey protein shake has another 850 mg of mushroom extract concentrates, from Maitake (30% polysacchrides), Reishi (10% polysacchrides), Shiitake (6% polysacchrides) and Agaricus Blazei Mushroom Extract (35% polysaccharides and 25% beta 1,3-1,6 glucans, brand previously listed as 55% polysaccharides)
3. "empty stomach" scheduling and time separation (30-60 minutes) is part of the compliance problem, e.g. enzymes then PSK then UFT (5FU), or whatever order seems the sensible priority right then.0 -
peanut skin water
Dear Pepe,
It really works like magic! Oncologist and nurses all recommend this. When my mum didn't drink it, her platelet dropped to around 110. After she starts drinking it (every other day), her platelet went back up to 200.
Let me know if you need the recipe!
Love Dora0 -
Dora yes i will appreciate itluvmum said:peanut skin water
Dear Pepe,
It really works like magic! Oncologist and nurses all recommend this. When my mum didn't drink it, her platelet dropped to around 110. After she starts drinking it (every other day), her platelet went back up to 200.
Let me know if you need the recipe!
Love Dora
you can send a pm If you want!
Thank you Dora!0 -
My integrative med dr at MSKCCtanstaafl said:beta glucans
My wife uses a PSK-like clone to increase her platelets, WBC and RBC. The active ingredients in PSK are categorized as beta glucans. There is laboratory work that suggests that some beta glucans stimulate the precursors to bone marrow formation in animal models. Beta glucan products appear to vary greatly by source and brand, standardization appears to be a headache even for the manufacturers.
My wife is not fond of taking "PSK" (the particular JHS mushroom extract is "Coriolus Super Strength" from LEF), since they work best or most efficiently on an empty stomach, maintaining daily compliance is an ongoing effort. But they really do increase her platelets, WBC, RBC at 2 - 3 grams per day. Her platelets and WBC nose dive when she slacks off too much. I've seen Japanese papers with cancer patients' use of up to 6 grams per day of PSK. $$$
Recently she's started trying the BetaRight WGP beta glucan licensed/manufactured by Biothera, and says she actually feels better taking them, that they are more agreeable. However because we're in the middle of ramping up her supplies and rate of intake, it will be another month or two before I start to have more CBC data.
The current plan is to try 2.4 gram "PSK" (40% beta glucan) and 1-2 grams BetaRight WGP (80% beta glucan), to see what we get. Not sure whether she'll take it all as caps or we'll have to dilute part in the vitamin shake. We previously tried adding a generic PSP (chinese proteo-beta glucan) with her PSK that increased WBC and platelets at the expense of RBC.
just put me on PSK - Coriolus Super Strength. Her comment was that I was to take the PSK, not PSP variety, as PSK has been shown to have better affect on colon cancers. She recommended that I start with one capsule twice a day, and add one more capsule every week until I was up to 5 capsules/day. Thanks for noting the empty stomach - I hadn't realized that and was taking it with meals. (I thought that's what she'd said.)
Dr. Wesa particularly recommended against the PSP variety for us colorectal cancer types, stressing that in this case, she was recommending brand and strength. Other supplements I'm on she has no specific recommendations (D3, CoQ10).0 -
Hello Tanstaafl, I hope this message meets you well. I came across your post searching for adjunctive treatments for my sister who has been diagnosed with adult T-cell lymphoma/leukemia and her platelets are low at the moment. I am curious to find out more about the PSK regimen/ mushroom extract supplements that helped your wife increase her platelet count. I tried to send a direct msg but unable to figure out how that works.
thank you
Di
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PSK has some data on colon cancer that correlates with the CEA marker. I did not see PSK- leukemia papers in a cursory search.
Cancer molecular types are so different I would look for papers and professionals addressing leukemias and the T cell leukemia specifically. For supplements these are likely NDs with a cancer focus in their training and credentials, MDs that have a deep interest in integrative/functional/orthomolecular medicine.
One place I start to try to find cancer related information with an integrative view is Life Extension Foundation and then expand my search various directions.
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Hi can you buy this or to you make it?
0
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