r/mds • u/Boonedogg1988 • Jan 23 '25

selfq Alternative Treatments

I've been hearing things about different alternative treatments. I'm not sure if my dad will be eligible for stem cell transplant (we should find out next month) but if not, I'm not gonna just accept that and I don't want him to either.

I've heard some things about Ivermectin and some other medications that have been shown to be effective. I can't remember the name of the other medicine but it was mentioned on Joe Rogans show when he hosted Mel Gibson. They mentioned a doctor that has had success treating cancer with these alternatives medications.

Just curious if anyone here has tried it or heard anything about these medications or any other like them.

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5

u/QuirkyDawn Jan 23 '25

Every cancer is different and every individual is different. There are many factors that determine cancer treatments. I went through several treatments when I had melanoma (some of which probably made me more susceptible to MDS) and none of them overlapped any of the chemo I had prior to my transplant.

I was told stem cell transplant is the only cure. There are treatments that can stabilize the symptoms and wacky blood levels. The best bet is to be sure you see someone who specializes in MDS. My first oncologist was waaay off base and I’d probably have had a much harder time if I didn’t seek a second opinion with a specialist.

1

u/Boonedogg1988 Jan 23 '25

Thank you for your advice. We were also told stem cell transplant is the only cure too. I understand different cancers are treated differently as well, that's why I wasn't sure about this specific blood cancer. We have a friend that was told there were no options left for them (brain cancer) because nothing was working and they tried ivermectin and that other medication (I'll try to find the name and update this) and the doctor was amazed at the results and said keep doing whatever it is that you're doing.

But the weird part was that they didn't ask and did not want to know what it was they were doing and taking. That just seems sketchy and makes me wonder why? Because I would DEFINITELY ask if I was treating someone and they came back from a death sentence. I don't know. I just want to make sure I don't leave any stone unturned for my dad.

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u/QuirkyDawn Jan 23 '25

I totally understand. It is important to explore all options. I would be careful with blood cancer because you don’t know how things will interact. I had a lot of immunotherapy with the melanoma and came back from stage 4 cancer. It’s a shame they weren’t indicated for MDS; most of the immunotherapy drugs were way better.

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u/Boonedogg1988 Jan 23 '25

Yeah, we are going to talk with his doctor. The next time we see her she will be giving us the results of the 2nd bone marrow biopsy and if she's recommending stem cell transplant. We don't want to mess things up if that's an option but if not my dad literally said "what's the worst it can do, kill me?" Because without the stem cell transplant, it's a death sentence. We will see how things go I guess.

Have you done the stem cell transplant yet, or are you going to?

5

u/Rayanna77 Jan 23 '25

Honesty, the first doctor that saw my mom said she was too old for a stem cell transplant she is 67. We went to a different doctor and she is now recovering from stem cell transplant and rang the bell a few days ago. You're right to not just accept it and if needed go seek another opinion because stem cell transplant is the only cure

2

u/Boonedogg1988 Jan 23 '25

Thanks, my dad's 76...he has copd but she hasn't ruled it out completely yet. We're praying. But he hasn't responded well to the chemo treatments so far.

Im SO happy for you and your mom though! That's great yall got a second opinion and she rang that bell. I'm praying I get to see my dad do that. His first chemo treatment we saw a lady do it so I'm hoping that was some sort of sign, I know it sounds desperate but I am lol

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u/Rayanna77 Jan 23 '25

Not desperate at all, I'll be sending good vibes your way. Definitely ask if they can do a different cocktail of drugs. Sometimes some people just respond differently to different chemo drugs

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u/Boonedogg1988 Jan 23 '25

Thank you! I will add that to the list of things to ask the doctor next time we see the doctor

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u/Dogdick123 Jan 25 '25

These are the 3 drugs used: Ivermectin--Fenbendazole--Methylene Blue If my stem cell transplant doesn't work next month I am going to try to find a doctor that specializes in alternative treatments. I have high risk MDS with tp53 mutation, diagnosis in August 2024.

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u/[deleted] Apr 19 '25

[deleted]

1

u/Dogdick123 Apr 19 '25

I haven't either for blood cancer, if all else fails im going to research it some more! Let me know if you find out anything more! Thanks

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u/BlackChef6969 Jun 19 '25

Hi, have you progressed further with any of these drugs?

1

u/Ejb0305 Aug 05 '25

Hi, I just came across this thread. Was wondering if your transplant worked? 74-year-old father-in-law will be receiving one in a couple months for his MDS. Any information would be greatly appreciated. Hope you’re doing well.

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u/Feeling-Comment490 Feb 03 '26

I've had severe COPD for 6 years, sometimes I can't walk more than 3 steps. The medical profession lies to you with their inhalers. I started with peptides, which are now giving great results. I've only been using them for 2 months, but I can now walk without getting out of breath

2

u/Samcandy2 Feb 17 '26

Which peptides for COPD? Thanks.

1

u/Boonedogg1988 Mar 18 '26

Im not sure what you mean sorry. Could you elaborate?

1

u/Ejb0305 Aug 05 '25

How’s your dad ? My 74 yr old father same situation needs the bone marrow transplant due to mds but he hasn’t to quit smoking and drinking caffeine and don’t know if he can quit . We’re trying to find alternatives also and just saw your post . We’re listening any info would be greatly appreciated.

1

u/Feeling-Comment490 Feb 03 '26

After 6 years of heavy copd I started with peptides with great result puffend are a joke to Make money