Hello, writing on behalf of my husband. Diagnosed less than a year ago, and being treated with Firmagon/Xtandi. Though the urologist tells us he is in remission with a PSA currently <0.13 the ADT is causing a poor QOL due to extreme fatigue, weight loss, muscle loss, nausea and food tastes bad, chronic sinus inflammation and just general misery. From reading this forum, we understand the importance of exercise in offsetting these side effects. But his is already so tired and weak it is difficult to start. He is scheduled for a PSMA pet scan soon with the possibility of radiation to the two mets that would possibly allow him to take a break from the ADT. Curious if Estradiol patch or prednisone could give him a bit of a jump start on regaining some strength. Honestly I am afraid if the radiation adds to his fatigue, he will be unable to handle it. We currently have no oncologist on our treatment team, though I have requested one. We live in Wisconsin but are willing to travel to Minneapolis or Rochester, Minnesota to receive the best care. Recommendations will be appreciated.
Didn't expect this: Hello, writing on... - Advanced Prostate...
Didn't expect this
If his QOL is that bad maybe he should switch to abiratorone.
Is he castrate resistant? If not, I would try to stop Xtandi for a while or reduce the dose to see if things improve. I've read that the side effects from Xtandi can be pretty rough. And as Magnus has said, Abiraterone should work just as well, but generally has less side effects. This is based on my limited knowledge.
IMO radiation of the 2 metastases has to be in addition to radiation. Radiation of metastases doesn't cause fatigue. Charles Ryan at the U of Minnesota is one of the best. Way better than anyone at Mayo.
If he needs a break from ADT, he can choose to take an ADT vacation.
I also had a rough time with the combination of Firmagon/Xtandi (although it did a great job at lowering my PSA). I had to take a break from Firmagon/Xtandi, and when PSA started rising again, I started back with a new combination, Orgovyx/Nubeqa. So far the Orgovyx/ Nubeqa has been much more tolerable, and still seems to be bringing down PSA. However, I am not sure the drug overlords would allow your husband to take Nubeqa due to his rib mets. For some dumb reason, it is only "approved" for non-metastatic use. He may still want to look into the Orgovyx because it is basically the same type of drug, only in a pill form, and it seems to come with much less fatique than Firmagon.
For me, "holding down" PSA because of ADT+, felt like kicking the can down the road. With 5 or less metastatic sites (Oligometastatic), focused on adding radiation treatment (RT).
My PSA was starting to creep up after about 9 months of ADT vacation. So, when my PSA hit 2.17 from holding <0.02 for 9 months, got RT and reluctantly restarted ADT+ as well.
Now, PSA 0.13, but don't know if this level be the same without restarting ADT+. Anyway, there's studies that demonstrated combinational treatment (ADT+ and RT) resulted in favorable outcomes.
It is possible the symptoms result mostly from the Xtandi itself, and not so much the ADT. Perhaps drop the Xtandi and see?
I was on Firmagon alone for a few months with no real problems, and when I added Zytiga I actually got a real energy boost for about a month (probably from starting prednisone, I imagine).
I actually became more active than I was prior to starting ADT. Problem was, the prednisone also immediately boosted my appetite. Within a few months, the energy was gone but the increased calorie consumption remained. (Your husband's mileage may vary.)
Also, if he appears to be clinically depressed in addition to generally fatigued, consider an antidepressant like wellbutrin... it has stimulative effects for many users (unlike some SSRIs like Paxil, which put me right to sleep). For many depressed men (like myself) exercise becomes one of those MANY things you know you should do, and possibly can do, but just simply don't DO until your depression is addressed.
Well he's lost about 40 lbs, so stimulating his appetite would be a good thing right now. He probably is depressed, but is very reluctant to add any more drugs because everything seems to initiate another unpleasant side effect. Thank you for the suggestions - will discuss with him and the doctors.
Sorry, I missed the mention of weight loss. Many men can experience the fatigue, muscle loss, and general misery of ADT and quickly GAIN 40 lbs... like me.
I understand the concern about med side effects and interactions, for sure. The weight loss is a concern. There is research showing that by changing the timing of drug intake from morning intake to just before sleep, the distaste of food that Xtandi can cause is reduced in some men. So maybe take in pm... or maybe not at all?
Just one last thing I would mention is, be sure his PCP and other docs do not just assume all the aspects of symptoms are directly related to either the cancer or the cancer treatments. But to me, sounds like the Xtandi. Best of luck to you both.
A few points. I often get little sleep due t frequent need to urinate and hot flashes. For some reason always seem to be able to sleep once the sun rises and I could easily stay in bed all day but I force myself to get up and get going. Same with exercise, I could accept defeat and ust pass on it but I don't. I bicycle when I may be having difficulty walking due to muscle loss and sleep deprivations but tell myself that if I don't get the minimum of 3.5 miles of steep mountain riding I might as well give up.
I think I have fewer side effects (no T is no T) after an orchiectomy compared to firm is gone. I think I am less tired now?
Also have all your blood levels checked including vitamin B and D. Don't over supplement either of these because of possible effects on PC but if either is very low consider supplementing.
Xtandi is tough. See if he can switch to abiraterone for sure.
As has been said, radiation is unlikely to add to his fatigue, it’s nothing compared to the firmagon and Xtandi.
He really needs to move, especially on these drugs. Do everything you can.
Xtandi was extremely difficult for my husband. Therefore, he never got the full benefit because we had to reduce the dosage. Still, he was able to get a couple years out of it before changing to abiraterone. Personally I would stay with Xtandi until progression is seen on a scan. Try a reduced dose to see if his tolerance improves. Also, megace has worked for eliminating hot flashes and as an appetite stimulant.
Charles Ryan who TA mentioned above is at the U of Minn and there has been some recent discussion of him on this forum. He is originally from Wisconsin. There is also another group in Minneapolis that Mayo is referring people. Hopefully you can find this discussion with a search. If you can get in with Dr. Kwon at Mayo he is also highly recommended by many on here.
Agree with spencoid2, need to check vitamin levels. Most people are D deficient.Vitamins D,A,and K2 all work together. I gave my son six months supply in one daily pill available from Amazon.
He may find he feels better if he also avoids vegetable oils.These are pro-inflammatory.
My husband had very similar side effects immediately after starting Xtandi. He continued taking it for five weeks with no improvement in side effects. As it did not bring his PSA down either, the doctor decided to take him off of it. That was 9 days ago and we are still waiting for the side effects to go away. My husband did well on Zytiga. It kept his PSA undectable for two years with minimal side effects. I hope that your husband finds something that works better for him.
hi Battle_on ... i'm on Eligard every four months and Xtandi 160mg once-a-day ... i take my Xtandi anywhere from 8PM to 10PM ... i make sure that i get at least 8 hours of sleep ... i find that i'm blest with much more energy during my waking hours ... best wishes ... Nous 
Hi Nous,
He has been taking them in the evening also and having a snack with the pills to avoid stomach upset. Unfortunately, it did not improve things for him.
Please consider as your first step to find your husband a medical oncologist who specializes in prostate cancer. We all do our best to recommend & make suggestions, however, since each mans cancer is unique a knowledgable MO is your best ticket.
Greetings Battle_on and the other half, How old is your other half?
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 03/08/2022 10:50 PM EST
I chose bicalutamide instead with fewer issues. But try 100mg progesterone gel caps orally. They definitely have helped me as well as 5mg melatonin for sleep. I take both at night before bed. I did add estrogen as well and that did help with libido as well. I would try progesterone fisrt. You might get the doctor to approve androgel but I doubt it. Also look into intermittent ADT or TRT- Testosterone replacement therapy.
Not what you're looking for?
You may also like...
Expectations
Didn't anticipate belly flab
Help on what to expect with this 6 month follow up?
Expectations after six cycles of Taxotere
What should I expect at the end?
I did not expect this..
PSA Expectations after SRT with Concurrent ADT
Life Expectancy 
What To Expect After RP?
EBRT - Is it the right thing and what to expect?
