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When The Standard Chemo Treatments Aren't That Effective After 17 Treatments, What Is Another Option To Switch To?

A MyAmyloidosisTeam Member asked a question 💭
Carnation, WA

I am Millard Collins. I have AL Amyloidosis. At the first part of October 2022 I started taking the usual chemo treatments with Cyclophosphomide, Bortezomib, Daratumumab and Dexamethasone. Starting out my lamba light chains was 92 after 4 1/2 cycles (17 treatments) they only went down to 75 dropping down to 65 once then up to 85 then back down to 75. My SGGT spiked to 276. So we stopped the chemo treatments two weeks ago. I see my oncologist in two days to see what different route we are going… read more

March 4, 2023
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A MyAmyloidosisTeam Member

I have confirmed AL Amyloidosis in my Liver, in my Stomach and throughout my Digestive Tract. It is also probably in other organs but so far not the Heart. I would forget about about the dewormer. Your friend (in my opinion) is making a mistake. You did not say which hospital was treating you. If you are not presently at one I would suggest you try to arrange to go to a Amyloidosis Center of Excellence, at least for a second opinion. Four that come to mind are Boston University Hospital, Cleveland Clinic, Mayo Clinic and Stanford University. Go online and and search for Amyloidosis Centers of Excellence. There are numerous others across country. There are many other treatment options available for AL Amyloidosis, especially at Centers of Excellence. That being said, if you trust your Oncologist proposal for how to proceed then go with it. Good Luck!!!

March 18, 2023
A MyAmyloidosisTeam Member

Personally, I would stick to conventional medicine that we have seen work in humans. If you want to take dewormer, that is your decision. Keep in mind though that amyloidosis is not cancer. It does not replicate like cancer does, it is a disease of aggregation.

March 6, 2023
A MyAmyloidosisTeam Member

Dear John,
What are you taking for your amyloidosis? How long have you been taking treatments. By the way I read an article by John Hopkins' neurology center and they said that mebendazole, a sister to fenbendazole, shows promising success against certain cancers.
I'm not sure why you are convinced that my friend is making a mistake. It seems to be fairly harmless to humans and there is a chance that it might just work. You might want to look at this blog:
https://mycancerstory.rocks/the-blog/
Let me know what you think. If you were an investor and you knew that the investment you were considering was basically risk free and you had a chance of making a million dollars, wouldn't you consider investing or would you think that is a mistake?

March 18, 2023
A MyAmyloidosisTeam Member

I am being treated with Daratumumab + Dexamethasone every 3 months. It is one of the gold standards for treatment for Amyloidosis. I tend to shy away from any unconventional treatment. If your friend is comfortable taking it he is the only one who whose opinion that matters. I was just offering my opinion. I have not felt it necessary in my case at this time. That time may come. I hope that clarifies my post at least partially

April 8, 2023
A MyAmyloidosisTeam Member

Dear Paula,

Thanks for your quick response. I don't have the t11:14 that is best for taking Venetoclax. I'll see my oncologist tomorrow. Hopefully he'll choose the right course that he thinks is best. I know this sounds crazy but a guy in Oklahoma says try dog dewormer. I'm attaching the link to his blog here. Let me know what you think. https://mycancerstory.rocks/the-blog/ My friend who suggested this to me takes it five days a week. Have a great day,
Millard

March 5, 2023

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