My husband's PSA is doubling on Zytiga and he cannot go back on Lupron due to the severe cardiac risk. Options given are an orchiectomy or back on Lupron. They are also looking for a genetic possiblity. He's been off Lupron since June of last year and on Zytiga alone. Last three Psa levels are doubling, but CtScan and bone scan from four weeks ago look clear (clear meaning no new bone mets, healing of bones taking place - he has several to ribs, pelvic, sternum, etc)
Is there another way to go other than the options we've been given? MO thinks at this point degarilix will post the same cardiac risk as Lupron.
Grateful for your input!
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Hello, please check out the post I just made this morning referencing Tom Keane's video/discussion of Firmagon vs Lupron. It specifically discusses cardiac risk and it is most definitely lower on Firmagon than on Lupron according to the information he presents. Best of luck to you and your husband.
That is good news. My doc, Richard Lam of Prostate Oncology Specialists gave me an int-ital Firmagon shot and when I asked him if I could continue those instead of following up Lupron, he agreed.
I will. I did watch a point/counterpoint video Keane did on the role of antagonists vs agonist sometime back when trying to connect the dots why my husband went from mild clacification to severe in 3-6 month while on Lupron. He had the inital firmagon shots then they switched him to Lupron, now that the damage is done they seem to think there would not be much difference between the two. Had we been part of the decision making at the first go around we would have stayed with firmagon...we didn't know.
It really is incredibly frustrating how hard we have to work to get the best information for ourselves and to be given such different recommendations from apparently equally qualified providers. If I am reading it correctly the switch back may still provide some benefit to your husband. How long was he on Lupron?
I have had to look at every decison being made and speak up if they do not address the issue at hand. He had two, three month Lupron shots, then the scans showed severe calcifications. At that point the MO suggested we get a cardiologist on board (by law he didn't even have to tell us). It was at this point I began to research the drugs he was on and found quite a bit as to the cardiac risks from Lupron. The six week follow up with MO, we refused the Lupron. A long-short hard few months to getting a cath and realizing he needed a quadruple bypass but was turned down because of extensive bone mets to the sternum and manubrim (he made it all the way to surgery then turned around to meet the surgeon in his room). I told each cardiologist/surgeons time after time he had the mets...none of them took the time to look at the scans..NOT ONE until the ER surgery was scheduled because of the extensive disease. Had I not spoken up he would have been in quite a mess in trying to heal with such a surgery, what a shock the surgeons would have had opening him up...Surprise! 😳 We now have a new cardiologist (truly providential!) who was not intimidated or afraid by the two, 95% & one 75% blockages in the Left Main and the one 95% & 75% in the LAD. He had the stent procedure done about a month ago, five stents total and they left one artery in the back of the heart untouched (75%) for the time being. All of the professionals are shocked my husband is still alive. So, no more lupron...firmagon still concerns me. The cardiologist has him on 80 mg. of Avorastatin to keep the LDL as low as it can go. All levels were in normal range even on ADT...but still, the calcifications developed quickly.
We are in a rock and a hard place...I'm just wondering if there are any older drugs that could possible help but leave the heart alone. One can hope.
I think he's giving his hypothesis, rather than facts, unless you've seen the data he's referring to? There is an ongoing trial comparing degarelix and leuprolide in men with pre-existing CV conditions:
There are more than a few docs with the same thoughts as Keane...we don't have many choices at this point. Do you have any info or experieince with the PRONOUNCE study, I was going to ask you about it. It's ADT or an orchiectomy? That's it?
Degarelix may have advantages over Lupron or similar. There are some data suggesting that Degarelix could offer a better control of hormone sensitive cancer. Degarelix can reduce the FSH (Follicle stimulating hormone) more than Lupron or similar and perhaps surgical castration. FSH seems to have a significant role in the development of the negative metabolic, cardiosvascular, skeletal and cognitive complications associated with castration.
I am certainly no expert and I am not as good at reading research as well as many on this board, but If I'm understanding Dr. Keane I believe it is indeed possible. As of yet Firmagon is only available in monthly doses, but honestly the injection site discomfort was only really remarkable for the first couple of shots. They don't really bother my husband anymore.
Thanks for this. I will do the same. My husbands issues from the Lupron that NO DOC is even talking about or addressing is the high blood sugar number and triglycerides. All pointing to metabolic problems. He is also having issues with the brain fog. His PSA went from 72 down to .34 on Lupron over 7 months. Then the last 2 months it has started to creep up. .38 and the last is .54. He’s Gleason 3+4=7 with seminal ves. Involvement and 3 pelvic lymph nodes near the prostate. He wants to do proton radiation. Waiting for insurance appeal at the moment for that.
I’m sorry his PSA is creeping up. I think it’s worth talking to the doctor about trying Firmagon. I don’t see how it could possibly hurt. Do you know what his testosterone is and where it was when he started Lupron? My husband’s testosterone was630 and PSA was 24 when he started Firmagon after RP. Last measurements were Testosterone at 18 and PSA at 0.01. It was 0.02 for two months then dropped last month to 0.01.
I’ve been really naggy about monitoring testosterone at each monthly shot when they measure PSA. And I had to ask about getting the lipid profile six months into ADT and I requested the other levels like alkaline phosphatase, calcium, estradiol, and glucose. It seems like regular monitoring of those things for them when they’re on ADT would not be something we would have to request. Especially with the weight gain that often accompanies it. It’s all pretty frustrating. My best to you and your husband.
So he’s not even getting the convenience of three month shots which was the main selling point they gave us when it was suggested he switch from Firmagon to Lupron.
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