I am 74 years of age and was initially diagnosed with prostate cancer Gleason 5+4 2011. I did not want and have had no surgery, no radiation and no treatment until starting ADT July, 2023.
March of this year, I was hospitalized for what turned out to be kidney failure do to urine backing up into the kidneys. Putting in a catheter solved the issue and I am continuing and assume will continue indefinitely with a catheter.
I developed bone pain in the across the buttock area beginning January, 2023. I did not realize it was related to bone pain until doctors confirmed that it probably was bone pain. I started on pain meds in April, 2023. The pain increased and pain med were increased as well in June, 2023 and is under control.
PSMA scan done in May, 2023 showed some met to lymphs on both sides of my groin area and one small lesion on my hip.
I started treatment with initial "double load" Degarelix shot July, 2023. My MO retired and the new MO changed from Degarelix to Lupron, the 3 month shot, August, 2023 to be more convenient rather than having to come in every 28 days for the Degarelix shot.
The side effect of extreme (very extreme) sweat episodes and hot flashes throughout the day and nights started within days of the Degarelix shot and continues. MO wants me to add Zytiga and 5mg Prednisone in conjunction with Lupron.
My questions are
1. Does anyone have experience that might shed light on can I expect that the extreme sweats episodes will diminish in time or stay the same?
2. Is the Zytiga with 5mg Prednisone worth it considering the side effects and, if I am reading things correctly, only extends Lupron effectiveness only about 6 months?
Thanks for any insights.
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Falcon10
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I'm on triplet for a year and a half. Did six sessions of Docetaxol chemo. Now it's Zytiga (ARPI) plus Firmagon (ADT). My clinical situation is quite similar to yours. And right now my PSA is 0. As for side effects, I have fatigue, for which I just started Ritalin / methylphenidate. And I spend one day every 28 days sleeping for 14 hours with severe shivers and a fever as a result of the ADT injection. I can live with that. Here are my answers to your questions:
1. Please take a few minutes to find my posts on my circumstances and the meds I'm on, I think you will find them relevant to you.
2. If you can go on Zytiga/Abiraterone, super fantastic. (It must always be prescribed with Prednisone.) Abi is known as an ARAT or ARPI.
3. I don't have any noticeable side effects that I'm aware of from Abi. The flashes are coming from your ADT Lupron/Eligard.
4. The combo of ADT and ARPI is super powerful and validated by massive clinical studies. You should familiarize yourself. Under normal circumstances there should be no question of adding an ARPI to ADT.
5. You can read my discussions elsewhere on the question of making a decision between Degarelix and Lupron on the basis of 30 day vs 90 "convenience"! "Convenience only" is an outrageous way to make a decision. If access to nursing services is difficult there are even some geographies like Australia where lots of people (I've heard) do their own injections (as injections go, it's a little bit tricky). But the two medical technologies are clinically not the same. Firmagon / Degarelix is a GnRH "antagonist" and Eligard / Lupron is a GnRH "agonist. More importantly there is evidence that an antagonist is better for your cardiovascular health. My doctor made the same lazy suggestion to me about convenience. After a lot of research I decided to stay with Firmagon / Degarelix.
I've read the estrogen patch also helps to reverse bone thinning. Is that true? I took your advice and scheduled an appointment at Fox Chase, I didn't get Dr Pilmack, but I am hoping to be cleared to begin the transdermal patch that my current MO is so opposed to. It's a QOL thing for me. The Zytiga, Eligard and prednisone have kept the cancer at bay, but after 4-1/2 years, I'm feeling the effects.
You often deny the importance of anything not supported by clinical trials. Why do you recommend EmbrWave2 when there is nothing but company hype and a few instances of anecdotal claims?
I made a cooling thing that used a power supply so it could cool indefinitely. It did nothing. The watch has a tiny battery and is only turned on after a hot flash starts. I would already be awake. The positive reviews are not very positive. I think that a gentle warming device might actually be better. When I can get my dog to cuddle I have fewer and less intense hot flashes
Seemed to me that TA was just offering options, not vouching for it. However, I am one of those that has offered conditional praise for the EmbrWave2. I say "conditional" because I have not tried it myself, but I know four men in my local support group who use it and say that it has significantly helped them with their hot flashes.
First six months of ADT I was on both Lupron and Zytiga. Hot flashes were regular daily events at 11pm and 4am. The later 4am episode was usually with heavy sweating, so much, that I had to put a towel over the sheets before going to sleep. I stopped Zytiga at six months due to high BP and continued with Lupron alone for another 12 months. The nightly sweating stopped after discontinuing Zytiga.
Thanks for your reply. My light sweats are are at least every hour and heavy sweats are maybe every couple hours during the day and 3 to 4 times during the night.
Zytiga can be wicked costly. But it is available generic for about 1% of the brand name price. See scriptco.com et al (lots of info here on HU about such). Cash-only, have your MO send the scrip there.
Been on Lupron + Zytiga 4.5 years. Took Casodex for a brief period before and during Lupron, which is the usual thing to prevent so-called flare.
For me, night sweats are completely different from hot flashes. Bad night sweats (bedding got soaked) started right away but subsided after a few months. Hot flashes (which can occur at random times day and night, produce some perspiration but I don't get soaking wet, and affect upper body only) came on slowly and I still have them.
Thank you for this info. Yes, for me the sweats are different than "hot flashes" and my experience is similar to yours. Glad to hear about the severe sweats subsiding; I hope that will happen in my case.
Did the Zytiga give you any noticeable side effects by chance?
Since I started Zytiga and Lupron about the same time, it's not really possible to associate side effects with one or the other. Most side effects are simply due to lack of testosterone, and both cause that.
my psa on 4/18/23 was 183 and test. was 321; on 8/10/23 after the "double shot" Degarelix after the 7/18/23 blood test my psa dropped to 16.4 and test. dropped to 7. My first Lupron shot was 8/17/23 and no Zytiga yet.
This is my second time on Zytiga and ADT. I had no sweats the first time and get an occasional one at night now. I am younger than you and fairly active, just finished a 4.25 hr road,gravel,mtn bike ride. Most of the really active people tend to well with effects like fatigue, hot flashes and brain fog. The rest of the physical side effects we all get, shrinking junk, loss of body hair (luckily my head hair is doing fine even better), etc. Weight lifting will help most with bone density loss, something the Prednisone may or may not exacerbate.Good luck I hope your sweats slow down for you and you hit chemical remission and stay there for a long while.
And by the way I feel like a kid again on Zytiga and Lupron after stopping Xtandi which I hated!
At the point I am at I had the choice of Zytiga, Xtandi or Apalutamude. All 3 are listed in NCCN Guidelines for recurrence. I wanted Nubeqa (daralutamide) but my insurance company refused. On Xtandi I had almost every SE to one Grade or another and some troubling ones so I stopped it and told my MO. He tried to get Nubeqa again and insurance said no and I saw no point in trying Apalutamide so Zytiga it was. Having been on it before we were pretty sure I would tolerate it well and I seem to be doing so again. I didn't want it in the first place because of the steroids. My last PSA was .04 and at that time I was only on Lupron. So that kind gave me confidence I didn't need the extra kick of the Xtandi. If I had stayed on Xtandi I would have had to retire and go on anti depressants for sure. Next blood work is next week so hoping all is good. I feel really good. So depending on where your husband is in his disease it may or may not be an option to switch though Xtandi may be doing a better job at controlling his disease so keep that in mind. For me it was the first time I faced a real QOL decision cause mine was very low on Xtandi and I had only been on it a few months.
Thanks...me too but , knock on plastic, no catheter. Simple test for bladder elasticity ?..no Doc mentioned that to me!! One week witha catheter was something I never want to endure again.......needed after my prostate biopsy!!!!!
My husband is 6 years into treatments for his Gleason 9 with mets. Been on lupron for all 6 years. Started with 6 rounds chemo and then started zytiga plus prednisone. Has been on the 3 (lupron zytiga and prednisone) since may of 2018. Hot flashes definitely got better for him. Some fatigue he battles with weight lifting and activity.
You took no treatment for 12 years with a G 9! Well done! Or not, depending on one’s view. Now the bill comes due, so to speak, but it might have anyway. Most would say it’s miraculous the disease didn’t kill you already, but none of this means anything now of course.
How you’ve lived during those 12 years matters a lot now. Are you overweight, any high blood pressure, heart disease, smoking, diabetes or other health issues? How much do you exercise and what kind? Being as strong and fit as possible is the solution to living well on ADT. The Lupron is much more responsible for your side effects than the Zytiga. I would keep the Zytiga.
During the past 12 years I felt really pretty well other than urinary issues associated an with enlarged prostate; no diabetes, I've. never smoked, no heart disease, not over weight but a little heavier than I should be. My life overall was good until this spring with hospitalization for kidney failure. I did develop high blood pressure about 6 years ago. The high blood pressure resolved after the kidney failure incident and subsequent catheterization. Once the kidneys recovered blood pressure was no longer an issue. I will elaborate in reply to Tommyj2 question regarding my not having any treatment over the past 12 years.
Curious,if you care to elaborate,why you elected to have no tx? Side effects? Alternative treatments? You appear to have “lucked out” from a longevity standpoint.
The short answer is yes, the side effects. Quality of life rather than length of life has been my position.
My thought was ,because in many cases it is slow growing, I would like to try to fight this pc being as whole and as strong as possible and not be "wounded" . The stories I heard from people who had surgeries and radiation etc. varied, a few got along ok and many others had real issues with the side effects. I did not want surgery because of the "nerve bundle" concerns, did not want radiation because I was concerned with the effects of having to put a "glow" on the beam and cooking the rectum and bladder. I did receive alternative treatment with naturopathic doctor involving lots of supplements (please don't ask what they were/are too many to go over).
I had several conversations off the record with doctors about if this were you what would you do. Most did not answer but a few responded with I really don't know what I would do; one told me that he and his doctor friends were sitting around the bar one evening and asked each other the same question with the same answer "I am not sure what I would do." I also asked several doctors if they had come across many people who chose not to do anything like myself. I never got a clear answer so I am not sure if there are many out there. That is neither here nor there at this point but I was curious.
Yes, what to do is always there even after multiple treatments. It's difficult enough deciding when the problem comes to a head and really impossible ahead of time, at least for me. I just finished an over two year "vacation" after several radiation treatments plus Lupron and enzalutamide for recurrent sacral mets. Now I have a rising PSA, last one 0.44 with a 7 week doubling time. What to do? I love vacations but I also want to keep the tumor burden as low as possible. It seems to me that the fewer cancer cells present, the smaller the chance of developing hormone independence. Anyway, my new doctor, Sartor, at Mayo suggested abiraterone/prednisone. I started that 4 days ago. So far so good! Hahaha. I'm hoping for minimal side effects but lowering PSA. If that fails probably get another PSMA scan. I've had seven or eight PSMA or choline scans over the last 8 years. Then if there is only one or a few spots probably go to radiation if they are in places that can take it without too many side effects. My sacrum has had all it can stand. Yes, I've read TAs disdain for "whack-a-mole" but it's given me long periods off treatment so I like it.
Your case is very interesting. There many many PC sufferers who will always wonder what if I do nothing or what if I had done nothing. Good luck going forward.
Have done eligard and Zytiga/prednisone for better than three years since oligiostatic met(MCRPC) was discovered in one of the pelvis's Ischial bones(those we sit on). Previously treated with proton beam for Gleason 9 disease, with perineural invasion and a (Partin Score of 94) indication that metastasis was 94% probability already out of the prostate gland. 2years My PSA has remained undetectable since the exponitial doubling times it went from zero to 3.6 in as many months. Hot flashes such but so does dying. I believe zytiga has helped slow the process and would do it again. However, it is vital to keep regular exercise to slow or decrease muscle loss.
After about 3 years on Eliguard, mCRPC was dx'd. In 2 months it will have been 4 years with Zytiga(AA) and prednisone.
Interestingly, I always insist on copies of all my scans, and discovered a new tumor growing on opposite Ischial bone in mirror position of the first mCRPC one. All with undetectable PSA. In hindsight review of CT scans, it took two years to grow from slightly noticeable bump on bone lumen wall, to1 cm in size.
When I brought it to attention of the Dr supervising Magnitude study research that later proved me to be receiving placebo, he denied it was a met because it had not shown up on the bone scans yet.
I asked the bone scan tech, an experience man in his elderly years if he could get a more precise image of the spot of concern, which the Dr had poo, pooed.
He had me sit on the table instead of laying on it, and wouldn't you know it the spot lit up with activity nearly equal to the original met.
The radiologist, failed to note this on the report... Incompetent, or careless, perhaps more so the later.
As a result, I lost confidence in the institution and moved to a well known and respected Oncology practice that covers the whole state.
Another point is that the 2nd Gen antiandrogen can show zero PSA and yet it appears new tumors can form. Be on the lookout for this and change up treatment if ne ones appear. MDT, Chemo, Pluvicto, and supplement with off labeled stuff with some promise of efficacy.
I have struggled with bone pain throughout 4 YR perion of MCRPC.
I have found some things that work to reduce pain and slow growth but not necessarily what they are labeled for. 2years to get to 1 cm is a gift of slow growth in tumor terms. The first met was over 1" at discovery after nearly three years of being castrate levels of testosterone.
Pmsa Pet scan can detect tumors much earlier than Bone Scan/CT regimen. However if tumors have gone Neuroendocrine, they will likely not show. I that case, a fluoride based Pet can still "see", or resolve tumors long before they show up on a bone scan. This is my understanding, Talk Allen seems well versed and may need to set me straight if I have miss-spoken regarding various scan's sensativities, or weeknesses.
Good luck and be ready for the Return of Our Lord and Savior at his 2nd Coming. Then all this drama of evil, sickness, and suffering will be a distant memory as we peruse the Universe throughout eternity forward.
I am on Eligard and Zytiga with prednisone. I did go through a period of hot flashes and fairly mild night sweats. It did disapate over time. I cannot speak to how you would react. However, it has kept me stable for five years. I definitely think it's worth it, as long as the side effects are not too bad. You may also consider enzalutamide as an alternate to a Zytiga (abiraterone).
They do work but they do have complications. Here is one study that compares them. ncbi.nlm.nih.gov/pmc/articl... Unless you dispense with western medicine, or go to clinical trials, those are the current choices.
I had extreme hot flashes for years right after starting Lupron in 2011. I still get hot flashes but very mild. Bothered me for about 5 years then i started on venlafaxine which did help reduce the flashes but still bothersome. I stopped vanlafaxine in 2018 when i got into a clinical trial that stopped the lupron and used on estragen gel (cream). Worked great for me, no hot flashes at all, just my brease a little tender and larger. Unfortunately the company never published the results and so i was back on Lupron in 2019 and back on hot flashes although not very severe. I then started with the estradoil patch and it helps a lot. Took some time to talk my MO into the estradoil but he finally gave in and is now an advocate. Reduces hot flashes and also helps strenghten your bones. So i suggest you get on the estradoil patch ASAP and you s hould feel better. Also there is a 6 month Lupron shot available which i am on. Your still a young man but keep fighting and asking questions. This site is amazing for getting information.
.1mg is the most common I think.My MO who had to be talked into it
Started Mr at .02. Did nothing so moved to .04 and ginally got results at .1mg. Been on that for a couple of years. Good luck, I understand how bad they can be.
We are all different............... I was on Lupron and casodex for about 15 years and never had an issue with sweats or hot flashes...... However I do get hot flashes when I see my ex-wife....
You have what sounds like possibly cancer that is progressing in the face of androgen deprivation. While hormone therapy may be the cause of your night sweats, cancer alone can cause night sweats. The catheter will not control urine blockage if the cancer extends into the bladder trigone and obstructs the ureters themselves. Then you will get nephrostomy tubes directly coming out your back into a bag. I would reconsider local control with radiation or at least talk to a radiation oncologist about your options in addition to getting another medical oncologist.
I pray that it will stay at bay for as long as possible. It will get me at some point but I am hoping to go for as much QOL as possible and at the same time being realistic.
thanks for your info. My palliative doctor wants me to go on a generic of Prozac for the extreme sweats; I am hesitant to go on an antidepressant. I have the rx but have not started.
What kind of if any reaction does Venlafaxin give you and has it helped?
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