I've been considering doing a clinical trial or just starting on Nubeqa. The trial includes a pretty high dosage of hydroxychloroquine (HCQ), along with Metformin and Sirolimus. I'm trying to figure out if the trial/HCQ has a significant chance of causing heart disruptions/issues. I am cautious because I had heart PVCs/palpitations for 2-3 months after taking Levaquin two years ago, then the same thing happened last year, after my 2nd CV shot (2-3 months also). I resolved the palpitations by taking Taurine morning and night. Hydroxychloroquine is known to cause QT prolongation in some people, especially when the dose is higher (ordinary dose is about 200-400 mg a day) (1,200mg daily in this trial). Someone on this site, also said yesterday, that they recently showed QT prolongation on a heart ECG, and they noticed that Orgovyx lists QT prolongation as a possible side effect. I have been on Orgovyx since March of 2021.
Here are the precise dosages in the trial:
Arm 1 (which I'd be in):
Hydroxychloroquine 600mg twice daily Metformin 500mg daily for 7 days, then increase to 1000mg daily Sirolimus 0.5mg daily
Arm 2:
Hydroxychloroquine 600mg twice daily Metformin 500mg daily for 7 days, then increase to 1000mg daily Sirolimus 0.5mg daily Dasatinib 20mg daily
Feel free to chime in about any of the drugs listed in this trial, or about Nubeqa. Always good to hear personal experiences. I did read all the online reviews on drugs.com, webmd etc about Hydroxychloroquine but most of those folks have Lupus, Parkinsons or Rheumatoid Arthritis etc., so their reactions might be different than men without those diseases. Plus, those folks aren't receiving ADT simultaneously with the Hydroxychloroquine. Maybe some of you have taken this drug for other treatment reasons.
If I don't do this trial, then I'll probably start on Nubeqa in a few weeks, since I just became castration resistant and current PSA .14. Nubeqa comments are welcome as well.
thanks,
George
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GeorgeGlass
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QT Interval prolongation is a risk which is real in people who are on multiple meds including psychiatric meds which tend to prolong QT interval.A plain EKG can tell what your QT interval is. High dose Hydroxychloroquin has adverse effect on Eyes and to lesser extent on heart. Standard dose Hydroxychloroquin is used by hundreds of millions of people in developing countries every year where Malaria is endemic and has not been found to have serious side effects in people with normal heart function. This is prescribed in children as young as 3 years old during rainy season when mosquitoes abound. You might have to carefully monitor QT interval thru EKG and notice any unusual symptoms. Just like Ivermectin, Hydroxychloroquin does have Anti Viral and Anti Cancer properties. ( BTW.. I just got back from an overseas vacation)
Thanks LA, good info. I'm concerned about the 1200 mg daily dose of HCQ because its three times higher than normal dose.
Where did you go? I used to travel the world a lot but not since 2018 in Barcelona and Valencia. Going on a 7 day cruise on Saturday. First trip since I got covid in January 2020, coming back from a cruise. 20 something on the plane coughing next to me the entire trip. Bastard screwed up the entire year for me.
This trial is at a major medical center. There was a trial in 2013 through NIH which studied HCQ and chemo vs chemo alone. The study was halted from lack of success with the HCQ. However, they only used 600mg daily. These two show promise in vitro as well - Sirolimus 0.5mg daily Dasatinib 20mg daily. Sometimes combinations achieve something that individual items cannot. I just don't know if I am going to be able to stand the combo without bad side effects. I could wait to see if they have success and then do it later possibly, instead of being the test-person.
Darolutamide is well tolerated but I had some problems. I had more fatigue, muscle pain and articular pain. My osteoarthritis got really worst. I had minor problems with the blood pressure. The worst was the fatigue and the joint pain.
It is effective in controlling the cancer (nmCRPC). I had a run of 27 months without radiographic progression of the cancer. Progression was oligometastatic (2 small lymph node mets, no bone mets) in a PSMA PET/CT. Most probable not detectable in a regular bone and CT scans.
After two years on Daro. you didn't end up with heavy mutations like nuero-endocrine cancer etc? Sorry to hear about the side effects you had. I held the box the other day but have not opened yet. Oddly, I had knee joint pain and felt weird all over. I wonder if there was powder on the bottle from when it was made and shipped. I know that sounds weird, but it happened. What do you mean by articular pain? What was your blood pressure? How long did it suppress your PSA? originalText hope you are still doing pretty well Tango. What treatments did you start on after the Darolutamide?
By articular pain I meant joint pain. BP got to the 160, eventually controlled by adding carvedilol. PSA went down to 0.2 and stayed there for 23 months.
The treatment for the oligomets has been direct treatment with SBRT, still waiting to measure PSA and see what happened.
I don't think the cancer mutated to NE. PSADT still the same than in 2004, about 3 months.
Next month will be 20 years after initial diagnosis and 17 years after salvage radiation failed.
How the heck did you keep your cancer suppressed since 2004? A doctor I spoke to today said he could do a psma pet scan and then SBRT, if they can get a clear shot at the cancer. The NIH and MUSC didnt think they could get a good shot at it, so I dont know why this doctor thinks his radiologist is better than the others, but maybe he is. What was your experience like with the SBRT treatment. When did you do that?
Thanks Smurtaw. I'm talking to several doctors this week. My PCP is of no value on most things. I'm meeting with a urologist cardiologist and another oncologist this week. Will decide after that.
yes, just today in reviewing studies of RT + ADT, in one study adding ADT(or long term ADT vs short-term?) to radiation actually DECREASED overall survival......in a sub-group including men with certain co-morbidities !!! Does the average RO consider that when advising ADT with RT??????
It is a combination of autophagy selective therapies. If we can induce somehow a sustained authophagy process, theoretically cancer cells will end up consuming themselves and finally tumors will be gone. However, in realty I think this is challenging to achieve.
The main activators of mTOR are a variety of amino acids, especially leucine and the hormone insulin. So, a protein-restricted diet may have a synergistic effect with mTOR-inhibiting drugs.
That is a very interesting, and quite strange protocol for a clinical trial. No placebo + darolutamide arm? So they are comparing the same combination with or without the daily dasatinib? I presume they are using an LHRH ADT drug as well?I don’t see how they will be able to sort out meaningful statistical results from this. And hydroxychloroquine can be a confounder.
Nevertheless, I am interested in how they chose this combination otherwise. I personally take Metformin 1000 mg/day ( not diabetic, for metabolome effects), and Sirolimus but at 3 mg once weekly. And I use dasatinib 100mg/day for 3 days only, with Quercetin and Fisetin, every 3-4 months as senolytic regimen.
Might not be a bad choice for you personally if they are going to pay for everything. And no worry about being in a placebo arm. Just check an EKG at start and after a few weeks on HCQ to rule out Q-T prolongation.
Nubequa looks like the best of the AAR drugs. But uncertain if it should be first or reserved until another fails. As following showed.
Got your message. So the study does not actually include Nubequa. Nor does it require ADT.And one component of the various "cocktails" also includes HIV-1 protease inhibitor Nelfinavir. Too much all-over-the-road-map for me. No logic or foundation for these combinations that I can perceive. Would talk with the lead investigator for insight into what I cannot perceive. (Having an open mind. But we have but one life to play out.) 🤷♂️
Thanks Paul, I just sent you the more detailed plan for the study, in a link. Would like to hear your thoughts on that. I think they may have used this combo on mice and had great results, but who knows how that will translate to people. I think the idea is to weaken the immune system to a certain level, so that the other drugs can kill the cancer from the inside out. I will never be smart enough to understand the science behind it though. My biggest concern is my heart (CAD) and my current blood levels, which are already low, and I don't know why other than previous radiation. Maybe they have always been lower than average. George
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