Just got my test result, non-detectable again. Next test will be two years of non-detectable. The combination works.
RESULT:
NOT DETECTED
Result for previous samples:
2023-01-16 Blood NOT DETECTED
2022-10-03 Blood NOT DETECTED
2022-07-21 Blood NOT DETECTED
2022-04-04 Blood NOT DETECTED
2021-12-06 Blood NOT DETECTED... (truncated)
Reference purposes: https://cmlsupport.org.uk/post/56873
I believe Sarah63 also had similar results (see linked post or search on her name), not sure if anyone else out in the CML world has tried it.
I switched back to my original Oncologist a while back because the new one (who prescribed the Misoprostol) wanted six month testing and I wanted 3. My original doctor still does 3 months. He also sits on the board in the US so he gets all the latest info and has some input. He mentioned that no one on the board has even made mention of this combo and the topics they discuss presently have to do with dosage reduction. I also talked to the scientist who had the idea for this and he mentioned that he has been unable to get funding for a trial.
The pharmaceutical industry is blocking this, they stand to lose billions of dollars, so I am sharing to help others circumvent the immoral system. If anyone needs help getting Misoprostol, direct message me.
I reached out to my Oncologist to request a prescription after reading this but he was not comfortable prescribing it at this time. He did say it was interesting research and that I should seek out a clinical trial to see if they needed anyone. I emailed one but have not heard back. I would venture to guess that Novartis and others will do everything in their power to keep this from going mainstream as it would not be good for swaths of people to come off of TKI after going NED for a good while. Hope I am wrong about that last part.
"If anyone needs help getting Misoprostol, direct message me." ;)
Also, I found that pulsing seemed to be working well for me. What pulsing is: Stop taking your medicine for 3 days, then hit it hard with maximum dosage of TKI and 800mcg of Misoprostol. Only do this if you are MMR or below, if you are on the higher side of MMR, I would suggest just taking Misoprostol in addition to your TKI. See my old post for side effects (mostly it is diarrhea).
"See my old post for side effects (mostly it is diarrhoea)." Is this particular side effect dose related? The most common side effect of bosutinib is also diarrhoea but can be managed and is time limited, so I imagine it is possible to manage this effect of Misoprostol.
Thanks again for bringing attention to this combination on this forum- it is certainly at the very least interesting. Getting funding for a clinical trial is challenging at the best of times, especially as this combo would not be attractive to Pharma funding so would need to be clinician/research instigated and therefore research organisations- like CRUK here in UK.- would be a possible avenue, but that would be a long journey.
Sandy
Diarrhea is also common with Imatinib, but once you combine the two, it is much worse. I recommend taking it at night and not having to go into work the next day.
I think he, and possibly most Oncologists tend not to prescribe anything that has not come out of clinical trial and approved for use in the scenario intended. I found the place where one of the doctors in the mice trials works and emailed him. No response yet. So to answer properly, no, I have not found a clinical trial.
Thank you for sharing the info. I tried 400 mcg a day for 2 months and did get much better results than with just Dasatinib. It was difficult to tolerate it and 2 x 200 was much less problematic than 400 at once. I'm off now and will be on IP6 for a couple of months then I may go for another round. I also stopped all supplements except magnesium as I realized that anti-oxidants actually protect CML.
My numbers were improved while I took Omeprozol (Nexium) a few years back while on Imatinib.
I was prescribed the Omeprozol because I developed serious acid reflux from dissolving my Imatinib in water and drinking it in an effort to bring my number down.
I think I read somewhere that some Japanese doctors discovered this too.
Thing is I don’t think taking Nexium long term is a good idea.
