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Stage 4 Pancreatic cancer and supporting my son's choices

Pancreatic Cancer | Last Active: 2 days ago | Replies (13)
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@suelannon

Thank you for your very honest reply. I have been following many of your remarks for the last couple months. Would you let me know how long you have been dealing with Pancan ?
Mt husband was diagnosed last July after months of testing and finally doing Distal Surgery.
they found a large tumor in the body and tail of the pancreas. He is stage 4 with metastasis
to the lymph nodes and the lungs. He had several setbacks with staff infections, pneumonia,
collapsed lung and drains for over 6 months. This has left him very weak and tired. Oncologist will not give him any treatment unless he gets stronger because she is afraid that
the Chemo would kill him. He also had Renal Cell Carcinoma 6 years ago and has heart issues.

I did a lot of research on Ivermectin because my daughter in Law suggested it to us. Oncologist told us she did not believe it would help at all. There appears to be so many
possible side effects with the Ivermectin that I am afraid to let him try it.

Did you have any side effects when you tried it ?

Thanks for any info you can give me.

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Replies to "Thank you for your very honest reply. I have been following many of your remarks for..."
markymarkfl | @markymarkfl | 4 days ago

@suelannon , sorry for the slow reply; I've been out of town a couple days.

Dealing w/ pancan since initial stage-II diagnosis 3 1/2 years ago. Six months of Folfirinox, then had the Whipple 3 years ago, reported all clear post-op, but had a recurrence that went metastatic 4 months after that. I've been on Gem/Abrax/Cisplatin the last 2.5 years with good control, except for the 4-month clinical trial break during which the disease advanced rapidly.

I only took "a tiny dose" of Ivermectin (12 mg) on chemo day in January and February, which was once every two weeks, and experienced no side effects, but my CA19-9 remained stable under 100 during that little two-month experiment. My CA19-9 has risen to about 500 in the two months since I stopped, and MRI this week found evidence of disease progression. Despite some correlation, I can NOT claim this is clear cause and effect -- it was not a well-controlled experiment, and I can identify several factors that may have had a role in my status changing.

Regarding dosing, the above amount (12 mg) comes to 0.16 mg / kg given my body mass of approximately 72 kg. And to repeat, that's only once every two weeks.

Some of the biggest Ivermectin proponents on the web are pushing doses of 1-2 mg/kg (which would be 72 mg - 144 mg every day; yes, that's 6-12 times the dose I took, and 14 times more often, so it's a significant increase with all sorts of potential side effects.

Some of the biggest Ivermectin proponents on the web also appear on https://quackwatch.org/ , so beware!

Since I have ZERO MEDICAL TRAINING, I won't recommend this to anyone, FULL STOP!

I've run into obstacles getting my own prescription refilled, so I have ZERO experience with it other than the small dose and short-term use cited above.

But I'm also running into obstacles with clinical trial applications, and being stage-IV with disease progression and chemo resistance, I remain open-minded about taking the risk FOR MYSELF, and I commit to posting the good, the bad, and the ugly if I get that far.

Stay tuned! 🙂

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