Finding consensus on treatment and side effects

[Willie51]

As per earlier posts I’m 72 yrs old with Stage 4 Gleason 9 with some spread outside of prostate. I started ADT treatment in April and finished 4 weeks of radiation therapy on July 5. Statistically I think I’m doing well. My PSA went from 8.4 to .012 in two months. Until recently I had really no side effects. Then, 2 weeks after finishing radiation I finally started having the expected side effects, extreme fatigue every afternoon and moderate hot flashes. The fatigue is really debilitating! On top of the fatigue , my chronic insomnia has gotten worse. I’ve heard differing explanations. My questions : Are these side effects attributed to radiation only or a combo of radiation and ADT? I’ve heard they might last about 3 months after radiation stops. After the 3 months do the side effects go away almost permanently? I was lucky enough to really have no side effects from ADT to start. Are there side effects to expect after each Lupron shot? Also, is this Lupron + Abiriterrone + one time RT still state of the art treatment for my condition? How often and in what form do recurrence issues happen? Thanks for your advice.

[Tall_Allen]

Here's what I know about radiation-induced fatigue. The best thing you can do to make it go away quicker is exercise more.

prostatecancer.news/2017/11...

[Segway]

Hello Willie - my case is similar to yours - the cancer spread to my seminal vesicle. I finished 25 RT sessions on July 18th. I've received 2 shots of Lupron so far and my Radiologist wants me to continue monthly for upwards of 18 months. I've experienced lack of sleep (lucky if I get 4-5 hours), general fatigue, increased depression, complete loss of libido, weight loss, skin dryness, negative change in BMs and increased urination, and general feeling that my body has negatively changed. I'm not sure if these side effects are from RT or the Lupron. The loss of libido came right after the first shot of Lupron. My Radiologist isn't clear on which therapy caused the side effects. He said we can't tell if these therapies are working until late fall. That seems strange to me and I will review this with him when we meet in a couple of weeks.

I am trying to deal with this situation as best as I can and do understand it sucks.

My best to you - Rich

[Willie51 in reply to Segway]

Thanks. I get tested every 6 weeks for PSA and that’s how I know it’s working. I think that’s typical. Also I only get a Lupron shot every 3 months. Also similar that there’s differing opinions about which therapy caused side effects.

[EdinBmore]

Hey there,

There are a ton of posts here re side effects of ADT and other PCa treatments; none of them is pretty. BUT, different men react differently. A friend shrugged and asked what the big deal was. I, on the other hand, was devastated by Lupron. Obviously, we do not know where you'll fall on the continuum. I suggest you read "Androgen Deprivation Therapy: An Essential Guide for Prostate Patients and Their Loved Ones." It's an easy read and offers suggestions for dealing with side effects. Exercise is essential. Also, ADT can and will affect you sexually. Make sure you keep your parts well exercised...even when you are not in the mood. I used a penis pump and other toys and am very glad that I did. Six yrs later, I can get and maintain an erection, orgasm (no ejaculate, of course), and enjoy being a bottom. At the time I was going through treatment, I felt/feared that my sex life and enjoyment were behind me (no pun intended). I am lucky. Hope you are too.

EdinBaltimore

[JohnGelder]

Hi Willie. Everyone responds differently to the list of potential side effects. I kept a daily diary listing the side effects and the impact they had on me, such as fatigue, sleep etc. This enabled me to have definitive discussions with my oncologist. My side effects are as expected and caused little concern, if any, to the oncologists. That way I knew my body was responding as expected and that there were no surprises along the way.

As others have said exercise is important, even if you can only manage a short walk as this really does help with fatigue. Penile exercises are also very important so use a pump and toys, and masturbate, even if your libido is telling you you're not interested! I also took Tadalafil 5mg prescribed by doctor as this helps to ensure nocturnal erections. There is a real risk of penile shrinkage from both radiotherapy and ADT. I did all the exercises and took the meds daily and at the end of 18 months there was no penile shrinkage. Then within four weeks my penis shrunk by about a third, quite a shock. So there is no guarantee it won't shrink but if you do the penile exercises etc., at least you know you did everything possible.

I had (and continue to have - see also below) hot flushes. I now take Evening Primrose Oil capsules 1500mg and Sage Leaf capsules 1140mg. They don't stop it but I think they reduce the hot flushes by about a third. I have flannels to hand to wipe my arms and forehead and thankfully they only last a few minutes.

I had (and continue to have) fatigue and it sucks but I try to look at it as my body telling me its time to rest and do something else. For years I'd been saying I wish I had more time to read or watch certain tv programmes, now I do! I know the fatigue kicks in at about 4.00pm in the afternoon, so I try to plan my day to get things done in the morning or early afternoon. Shopping for groceries can take it out of me, so I treat myself to a bun or cake (I have a sweet tooth!) and have that with a cup of coffee when I get home, to rest.

I also had (and have) brain fog, which is very frustrating. I have to develop techniques for remembering stuff and now always carry a notebook and pen around with me. When I tire from using the PC, running a volunteer programme or doing family history research/writing, I have to stop (around 4.00pm) and leave it at that, rest, watch tv, read or doze.

After completing 18 months ADT (including 20 radiotherapy sessions) I stopped in August 2022. The hormones continue in your body and reduce while the testosterone returns and increases. It's like being a teenager all over again! I had penile shrinkage (see above) and my libido returned. Hot flushes reduced and fatigue got less and less. It took about six months. Managed to sustain an erection for up to ten minutes and have dry orgasms.

Having quarterly blood tests during this time was very important. My PSA doubled every time I had a blood test and after nine months the oncologist and trial coordinator (I am on a medical trial) were concerned enough to send me for an MRI scan in July 2023. This showed the prostate was free of cancer, so the treatment had worked. However, it also showed that it had spread to my lymph nodes (some of the cancer cells must have escaped from the prostate between diagnosis and radiotherapy!). As the consultant said, we are now in the business of managing it, not curing it (Advanced Prostate Cancer). They threw everything at me, double steroid therapy, chemo therapy (now completed) and two lots of ADT, which continues indefinitely (Darolutamide 600mg tablets twice daily and Decapeptyl injection every three months). Note I live in the UK so medication will be different to what you have in the States. With no chance of coming off the ADT I have to live with little to no libido, small erections and only being bottom.

Not sure if your treatment is for a fixed period or indefinite. Good luck and hope you manage to live with the side effects, temporarily or indefinitely. John.

[Willie51 in reply to JohnGelder]

Thanks John. All information is helpful but I do see already that everyone’s experience can vary. I’m less than 4 mos into treatment and have had very few negative reactions until last week 2 weeks after finishing radiation. Because I had some spread to lymph nodes I understood from the beginning it would probably be treatment from now on (Lupron + Abiraterrone). My PSA is good now but no telling yet how things will progress…no discussion of chemo yet. I am curious if my side effects (primarily fatigue) will abate over time or be continuous or sporadically come and go. So far the fatigue seems to have faded after 5 days. I have always had sleep issues and now they’re worse. And when I get up and move around I feel a bit wobbly. No brain fog yet. I guess we’ll see. So far I’ve managed to keep a mostly positive attitude.