Start radiation in 2 days, but Eligard is driving me crazy.

I start radiation in 2 days and I am scheduled for another Eligard injection in about a month. Has anyone stopped these injections. The side effects, hot flashes, night sweats, mood swings are driving me crazy.

[Tall_Allen]

You can talk to your doctor about managing the side effects. One of the best remedies for hot flashes is acupuncture. It's done in the ear, and you can be taught to self-administer it. An estrogen patch or a Megace patch will control the hot flashes. Estrogen may also help mitigate the mood swings and maintain bone mineral density. You may want to take 10 mg tamoxifen with it to avoid gynecomastia.

Increase your workouts. That will help avoid lean muscle tissue loss and fat gain. It helps with the mood swings. Perhaps more importantly, it helps the radiation kill the cancer better, protects healthy tissues (including blood vessels supplying the penis!), and helps prevent radiation-induced fatigue. Exercise is the single best thing you can do for yourself. I increased my workouts (both cardiovascular and weights) during radiation and have no lasting side effects.

[Hidden in reply to Tall_Allen]

Thanks for the reply. Insurance will not cover acupuncture. So that is not an option. Also I am not going to take anymore drugs. PERIOD. My question is about stopping the hormones. I am concerned about long term effects of them. If they can cause these side effects, I can't imagine long term. I do not have the option of taking time off work during radiation. I am not someone who deals well with medical issues. I had never had a prescription refilled until about 16 months ago. Had no idea how to do it. I am 56 and had not been to a doctor at all in over 12 years until then. I am just not geared that way. So my question is strictly about stopping hormone treatments, nothing else.

[Tall_Allen in reply to Hidden]

The effects of hormone therapy wear off after you stop them when your testosterone comes back, which it usually does. You did not say why you are taking adjuvant Eligard and how long your RO recommends you take it - I assume it is because you have high risk PC for which the recommended duration of ADT is 2 years after IMRT.

You also did not say what kind of radiation therapy you will be having. There are certain kinds, like high dose rate brachytherapy or SBRT, that may not require as much hormone therapy to be effective.

[Hidden in reply to Tall_Allen]

I had surgery last summer. PSA had doubled on my second follow up. 2 injections of Eligard, 3 months apart. I have had one. I am having 39 external beam radiation treatments.

[juliekeith_lewis in reply to Hidden]

Hello not sure if this will help .. my husband feels and felt exactly the same way as you .. he had never been ill

Never had time off in 53 years he got to the stage he could hardly walk in a morning so he stopped injections and they wanted him to go on tablets he said no so at min his on nothing and he seems to be slowly getting back to himself but he has started to have other problems... go see your doctor at the end of day they will still support you regardless of treatment you decide to take wish you all luck and care x

[Tall_Allen]

That helps. There was a randomized clinical trial that looked at using 6 months of hormone therapy along with salvage radiation. Among the men that got it for 6 months, 5-year progression-free survival was 80%, but only 62% without the hormone therapy. Some studies suggest that every month of additional hormone therapy lowers the risk of progression by 10%.

pcnrv.blogspot.com/2016/08/...

It is possible that an anti-androgen like Casodex might work as well as Eligard, but I don't know if the side effects would be much better for you - and you would certainly want to take tamoxifen with that.

[spencoid]

i understand your avoidance of doctors and drugs. i am 62 years old and take just one prescription drug. i avoid prescription drugs as much as possible. it is really easy to fall into the habit of most Americans of taking drugs of every type for ever problem minor to major. that is not my style.

when i was diagnosed with PC i was very lucky to have a whole staff of doctors i could trust. my urologist is a great guy (just had a follow up visit and got the results of a PSA test two years after initial treatment at .1 NDGDL) whom i trust completely. my brachytherap doctor was one of the best in the country. i also had IMRT and Lupron treatment for a year or two. the statistics for my particulars suggested that the best treatment was doing all three. gleason scale was 9 and PSA at diagnosis was something like 22.

ADT (Lupron in my case) was really awful. The one thing did not get was tits, but every other "side effect" from weakness, dizziness, hot flashes to the point of not being able to sleep.

acupuncture is not that expensive but no one suggested it to me. i can't remember the drug that was prescribed for hot flashes but whatever it was helped somewhat. if i were to do it again i would probably try estrogen and or maybe cannabis,

i really do trust the evaluation made by Dr.Peter Grimm whose statistics made it clear that my best chance was doing IMPR brachytherapy and ADT. it was not fun but i am alive and in relatively good condition 2 to 3 years later. Dr. Grimm died (last year?) so his council is not available. I was very lucky to be one of his last patients. I really believe he always had his patients best possible chance of success primarily in mind. While suffering the effects of ADT I just accepted that I made a decision about treatment based on the best available council and that as awful as it was, I would stick with it.

Years from now if you are suffering from metastatic PCA, it will be too late to change your mind.

[Hidden in reply to spencoid]

I chose to cancel the radiation therapy and all future appointments with RO and Urologist. I regret the surgery, which I had because I absolutely did not want radiation. I was told after surgery that they got it all. LIE!!!!!

[billd9946 in reply to Hidden]

Wow... your story sounds so similar to mine. I was preparing for radiation therapy and got one shot of Firmagon. The same day I received the shot, I had this sinking feeling that I had made a mistake. Six months later and after not continuing with further injections, I am still having hot flashes and mood swings... Miserable! I recently had my testosterone level checked and it's about one quarter of what it should be to get to reach the lowest, normal level. In addition, the idea of radiating the entire pelvis and possible side effects are scary. I've read that even if you get through radiation well, several years later there can be adverse side effects surface. So, I'm in a holding pattern right now. The best thing I did for myself was purchase a battery operated miniature fan that can also be plugged into any usb port. When I feel a hot flash coming on, I turn the fan onto my face. It really works to calm the effect and the hot flash quickly subsides. Good luck with whatever your decision... I believe quality of life may be more important than quantity.

[Hidden in reply to billd9946]

I had the exact same sinking feeling after my Eligard. I was in total panic mode within hours. I was to start radiation today, but cancelled it and all other appointments on Tuesday. I am very lucky and have a loving partner. His tears were more than I could handle and I rescheduled radiation and am starting on Monday. But I am scared to death of the side effects. There will also be another Eligard injection in a month. I guess I will know in a few months if I made the right choice. Things will either be better or I may feel my insides are an overcooked Swanson Microwave dinner and sex will be something others have. But I am not someone who can go for tests every few weeks and wait for another bomb to drop. So this either fixes it or not.

[billd9946 in reply to Hidden]

My decision to wait was supported by the one medical oncologist I finally went to see at Hopkins. I had my prostatectomy in July 2015 and had been monitoring my PSA every three months. For the first year we were doing the regular test, which only detects PSA value once it is greater than .1, and mine remained undetectable. I kept reading about a post prostatectomy test online and finally convinced Hopkins to order the ultrasensitive / post prostatectomy test. The first result came back .04. The second and third tests came back .05. Some doctors say the best time to start ADT and RT is when the PSA exceeds .03, because there is a study or two that seems to support this. However, my oncologist believes it is too soon to draw this conclusion. He advised that there is no overwhelming evidence, yet, that starting so early is beneficial. Many still follow the rule that RT be started at PSA around .2. I'm not sure what your level is, but I guess it's best to follow your gut. You'll still need to be tested ongoing to make sure that your PSA doesn't begin to elevate again, unless you opt not to. Anyway, good you have a loving partner to see you through and support you in whatever your decision might be.

[Hidden in reply to billd9946]

My PSA was .26 on second surgery follow up, after being .08 at first follow up from surgery. Surgery was 6/13/16. I was a Gleason 7, 4 cores positive, 2-4+3 and 2-3+4. I prostate had one area barely in the margin. Surgery was nerve sparing. So I am a little unsure what is up. Nothing shows up on MRI, scans, etc. So they are going to radiate the prostate bed. Seems like a crap shot to me.

[spencoid]

future effects of the radiation i got are something i try to not think much about. i do feel that i had the best advise and chose the best treatment for my particular case. now, probably three years after ADT i have about as much sex drive as before. not having a working prostate certainly changes things but this would have been that case with surgery too.

there are few perfect cancer cures, most are a compromise.

i think you are making the right decision to resume radiation and ADT. once the ADT wears off, you and your loving partner may need to be more creative sexually. think of it as a challenge

[EdinBmore]

Sorry for your bad experience with Eligard. It appears that there is a very wide variation in response to these hormones. I had an injection of Firmagon 3 wks ago and, overall, ok (depression and fatigue are my major complaints). I'm supposed to switch to Eligard in November. Your response to it is of def interest and I'll discuss with RO before proceeding. Good luck with the beam.

[EdinBmore]

I feel your pain. I had one month Firmagon injection in September. Docs switched me to 3 month Lurpon injection. No boobs, per se, but most of the other side effects hit me like a tidal wave: no sex drive, zero ejaculate, mood swings, hot flashes, depression, shrinking testicles, and so on. Am completing 25 IMRT (45 Gy total). To be followed by LD brachtherapy. I am hoping doc says hormones for 1 yr total; I think I can survive that. But, to answer your question re stopping hormones, it's tempting as hell but, of course, I fear that if I do, I may jeopardize whatever progress I've made. Really tough call, Hidden. And, I, too, would be so hesitant to take more drugs to counter the effects of the hormones. I understand completely. I guess I've resigned myself to trusting the docs I have...but with a dose of skepticism. Keep asking your questions. Tell them your concerns/fears. Read the literature and make as informed decision as you can. There's a lot of science to this but there's also a hell of a lot of art and, alas, luck.

[Clark6965]

My husband found caffeine in Coffee triggered his hot flashes. Also, chocolate and some wines.