Radiation treatments and Lupron therapy

[Suds4me]

New to group. I just finished 45 days of prostate radiation with little to no side effects. My Gleason score is 10 and have been on Lupron now for 4 months. Other than higher blood pressure,I don’t have any serious side effects. My doctor told me that it would take around 2-3 years before they know the outcome....is that true and what are some of your side effects and outcomes?

[Jimhoy]

Won’t say welcome..... so Greetings!!

The really knowledgeable members are going to ask you for more info.

I just know enough to be helpfully dangerous.

Standard of care for my Dx was 24mo’s of ADT but that was revised to 18mo’s. Most Dr’s stick with the 24mo as habit / big pharm recommendations!

As for the side effects, they vary by individual from zero to devastating. Most (that I read about) get the typical andropause symptoms and a large portion get minor brain fog later on in the ADT. If you’re 4 months in with nothing(?) and based solely on my experience, you may have dodged the bullet. Mine started almost immediately (the first month or so) and proceeded to kick my ass to date 2.5years)

My best advice (not knowing your age or physical abilities) exercise as much as possible and as often. EVERYONE will tell you that. Your body, mind and faith.

God speed

Jc

[Sandy752]

My Gleason was 4-3. I had 40 external-beam radiation treatments and PSA dropped to .7. I was not on anything at that point. After almost three years my PSA had risen to 3 and I went on Lupron. Radiologist had told me at the start that I would go on Lupron if PSA rose by 2 above the low point as that was an indication radiation treatment had failed.

I have been on Lupron for six years and PSA is now .22 (been steady for 2 years). Worst side effects for me (aside from no sex) have been fatigue which has gotten worse over time and hot flashes which have declined over time. I do a lot of walking and have maintained my weight which help with the fatigue. I just turned 75 and have no complaints and am happy to be here especially considering I lost a kidney to cancer 30 years ago.

[Hidden in reply to Sandy752]

That’s a fantastic story in my opinion . You losing a kidney to c makes you you a cancer warrior .. thanks .. You are amazing 😉

[Sandy752 in reply to Hidden]

I have to admit I got lucky as the tumour on my kidney was the size of a baseball when they found it doing ultrasound for something else. I had no symptoms and it would have continued to grow until I had symptoms and then it might have been too late.

[Hidden in reply to Sandy752]

Whoa nelly! Heavy duty with the kidney involved . Wonderful that you here today .🕊🤙🏽

[Tall_Allen]

Yes, that's true. They have to wait until the Lupron wears off and your testosterone rises back.

[GP24]

Your doctor recommends to continue for 2-3 years with ADT. So you will not know the outcomes before that period. However, there is a new study which has found that 18 months of ADT after radiation has the same outcomes as 2-3 years of ADT. So if you do not want to continue after 1.5 years you may discuss this with your doctor.

europeanurology.com/article...

Read this paper to learn how to manage the side effects of ADT:

[Hidden]

Hey Suds4me.. Good job finishing rt. Great that you have little side effects . I was #4 gl4+4 and I’ve done only rt and adt . I’ve had no signs with an undetectable psa four years now. True ? Sounds like he’s covering himself by giving a wishy washy answer like that . If you had scans and such prior to try and adt . Soon after they should scan and compare you to those . We want the psa to stay undetectable for as long as it can .. There is no one cookie cutter answer for us all . But we can relate to each once we go through treatments . The fine folks here will tell you more than most doctors will. The goal of adt is to chemically castrate us .. I did orchiectomy 9-17 and that permitted me to drop the lupron shots . There are many pathways we take to healing. I went on an all out holistic diet and nutrition plan under advisement of a natural psychic oncologist ... that’s my story . I wish you we . Welcome 😎

[jfoesq]

FYI- I have been on ADT for 7+ years. I have lost my sex drive, gained belly fat (aftre only gaining 15 pounds from age 17-54, I gained 15 pounds in 6 weeks with ADT and now then went up another 5. I have swelling in my lower legs and manboobs. Boy- do I hate those manboobs. My concentration may been affected and I think I am more tired and more lethargic. I hope you an other bear it better and respond well.

[VHRguy in reply to jfoesq]

Estrogen patches can help with most of your symptoms. Manboobs and sex drive won't be helped, but you can feel *far* better in every other way. Dr. Snuffy Myers suggested them, the 0.025/day or 0.05 mg/day dose. Patches changed twice weekly. Look for his video about it. Importantly, he addresses the typical outdated objections urologists will state when you ask about this. It is a greatly overlooked way to help guys on long-term ADT.

I

[Patrick-Turner]

Welcome to our group of ppl who have common interest of Pca.

In Dec 2009, age 62, I had Gleason 9 and Psa 6.5, and it was found to be inoperable in April 2010. So Urology doc transferred me to radiology and

oncology, and I began 2 years of ADT with 70Grey of EBRT over 35 days at 8 months after beginning ADT.

ADT reduced size of PG to make it a smaller target for EBRT.

After EBRT I continued ADT, then stopped when the 2 years was done.

But before I stopped ADT, Psa had gone from 8.0 at unsuccessful attempt at RP to 0.08, 18 months after I began ADT.

After stopping ADT, Psa remained low for 2 months because it takes time for testicles to begin making Testosterone again. But sure enough, T went up to normal after a few months , and Psa also went back to 8 after 6 months in April 2013, so my treatment was a failure, and I re-started ADT, and was told I need to stay with ADT for rest of life, and I have, ever since. Psa went to 0.2 low point soon after re-starting ADT, then slowly crept up over next 3 years then rapidly rose in mid 2016, to 5.6 so I had Cosadex added to ADT, and had an additional 31Grey IMRT added to PG . 2 Mets were found, and they were radiated with PG.

6 months later minimum Psa was 0.4, then rose to 5 again and I started taking Zytiga, and Psa went down to 2 then slowly rose, then rose faster to 12 in mid 2018. The 3rd PsMa Ga68 scan showed countless mets in bones and elsewhere. I had 5 shots of Docetaxel and Psa increased to 45 in October 2018, so it was declared a failure. I stopped chemo, and Psa went to 25 after 1 month when I began Lu177 in November 2018. PsMa scan showed I'd benefit with Lu177.

I had four shots by May 2019, and Psa was about 1.6, and I'd started Xtandi in April 2019, and Psa went to 0.32, the lowest level in November 2019.

But now its 1.3, so has risen 4 times in 2 months, and the fight is on again to deal with rising Psa, I have to have scans, deal with expensive experts, and have treatment that is not available in my home city of Canberra in Australia.

I have lasted 10 years since diagnosis with "high risk + aggressive + young man's type pf Pca"

Now the fight may more difficult, and experimental because Pca becomes mutated into more than one type of cancer; some may respond to more Lu177, and some may not, could need PARP inhibitors, maybe Olaparib used for Ovarian cancer, and there's no surety that this would work. The Pca that has survived all my treatments so far may be impossible to stop.

I have never known if I will survive another year since I was diagnosed. So I have never made plans or had a normal life of normal expectations which ppl enjoy without cancer, or some other chronic disease.

But since 2009, I have cycled about 110,000km, just around my town, just to keep fit and life has been quite good. I have not been married for last 42 years so I have had no partner or kids who ever were upset by my medical bothers. So life has been simple, but I found the doctors could not have done much more than they have, and nurses are all angels. I am still cycling, and less than 5 years ago, and slower, but I am 72.

Because of cycling and keeping fit, many side effects of fatigue, weight gain, depression, hot flushes did not happen.

ADT for longer than 2 years begins to make testicles unable to recover to make more T and the Rodger shrivels up to be smaller, and erections are strange because internal sponge tissue gets fibroids, and you could not penetrate a vagina properly. There is not the slightest bit of pleasure possible with any form of penile stimulation, it may be painful and cause skin tears and bleeding.

So by 2015, after 6 years of ADT my Rodger was completely useless, except as a drain pipe. I am fully continent though, and have a fairly normal life as a de-sexed male who is unable to offer any female a future. I soon got used to what I was once and am no longer, with no way back, and caring for myself alone.

Patrick Turner.

[binati]

At diagnosis I was T3CN0M0. My PSA was 250 and Gleason 5+5 with one ECE and seminal vesicles invasion. An initial PSMA Petscan showed no nodes. I have been on Firmagon (Degarelix) for 8 months now. From month 5 onwards I had RT - 39 sessions totalling 78Gy. The only steps to cope with ADT I am taking are one Calcium tablet daily ( I have kidney stones so only one against two recommended) and a vitamin supplement called VRx Gold which is to minimise some of the other side effects. I exercise regularly - walking 40 mins and cycling 10 mins in the gym alongwith a regimen of weight training which takes me 15 mins daily. I do this 4 days a week. On two days a week I play 18 holes of golf - all walking. I am lucky I have had no fatigue either during RT or with the ADT. I had hot flashes but these seem to have tapered off. I am losing some body hair and have put on a little bit i.e. 0.5 kg on the waistline but have lost a total of 2 kg overall through my diet. I am eating lots of vegetable protein including soya. No brain fog so far but I am forgetful though this was there before the ADT. The RT had mild type 1 urinary side effects which have mostly cleared in the month after RT. There is nothing that is bothering me right now. I have been advised PSA and detailed blood chemistry 3 months after RT was over and PSMA Pet Scan after 6 months. My RO says that she wants to keep me on ADT for 3 years at least and see if the PSA will go below 0.2. I might consider orchiedectomy after a few months as getting monthly Firmagon injections is very inconvenient and three days each time are spent recovering from the side effects of the injection. I hope this information will help you. I am hoping after 6 months there will be some indication which way this is headed. Mine was kind of the highest risk case that would have become T4 in a few months.

[EdinBmore]

Yes, greetings from a club member who doesn't want to be one.

25 EBRT/IMRT sessions, plus brachy boost, plus 1 yr+ of Lupron. Weathered the radiation fine but the ADT? For me, devastating. Envious of those who kinda shrug and say, "what's the big deal?"

Might I suggest "Androgen Deprivation Theray: An Essential Guide for Prostate Cancer Patients and Their Loved Ones."? Excellent text about what to expect on ADT, My side effects continue 7 mos post Lupron. Wt gain (10lbs+), hot flashes (every 2 hrs), genital shrinkage, zero sex drive, emotional instability (crying jags, depression, despair, suicidal thoughts), BP increase, joint pain, fatigue, swollen ankles, and so on.

Hoping at least some of these side effects will dissipate over time but becoming less and less optimistic.

FYI: the only thing that seems to help me is exercise and I'm no exercise enthusiast. It seemed to help with emotional stability, most importantly.

Have 6 mo uro/RO apts coming up. Thus far, T came roaring back and is now at 7. LOL Lowest PSA was .02, thus far.

Good luck to you.

EdinBaltimore

[scarlino]

Yes it’s true. I also had proton radiation but experienced failure after 18 months. Side affects vary from person to person so it’s best to discuss anything you experience with your doctor. As with other treatments there is a percentage of patients that will experience failure. I hope that does not happen to you!

[EdBar]

I’ve been on Lupron for almost six years now, PSA has been undetectable for over five years despite being dx G9 stage 4.

Main SE is fatigue, however I also suffer from brain fog/memory/cognitive issues, muscle weakness, aches and pains, etc. SEs seem to increase over time. I was also taking Xtandi for over four years but had to stop due to increasing SEs and it’s effect on BP.

I exercise daily, eat a Mediterranean diet, and use estradiol patches to help offset SEs. I used to get wicked hot flashes until I started using estradiol.

Ed

[Cmdrdata]

Welcome to the group. I read a few comments saying radiation was a failure, etc. etc. I do believe that radiation will most likely fail (PSA rise after 2-5 year) when total Gleason is 7 or more. I also believe that this same failure will happen to those who those who underwent prostatectomy/removal surgery. ADT will help bring PSA down to “< 0.1”, but that will also be temporary. Why? I think the “cat is out of the bag”, thus radiating the prostate still leaves yet undetectable PC cells somewhere in the body that eventually produces the PSA rise. My now deceased Onc was a believer that PC has a chance of long term remission if it is treated early and hard with RT/SURGERY + CHEMO + ADT while the body is still strong and able to fight the side effects.

[Boywonder56]

Fatigue, man boobs severe fog CRS it's a real joy ride don't let the first few months fool you

[billyboy3]

YOU need to do some reading on your disease and current status. My major concern is your very high gleason, that is as bad as it gets, i.e. your cancer is most aggressive in terms of strains, with the least likelihood of long term effectiveness no matter the treatment.

You did not note your psa scores during this entire period and you need to get those for as far back as you can get. I am not sure of what other tests, scans etc have been done and again, you need to obtain copies of your entire file and review it all, ask questions so that you understand where you are at.

Otherwise, we are all guessing as to what you should do next, which could constitute the worst in care being offered, so good luck suds, get more information back to us here.

[j-o-h-n]

Greetings suds,

Please tell us more info about yourself. All info is voluntary but it helps us help you and helps us too.

p.s. Buy a beer comb....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/30/2020 8:07 PM EST

[RonnyBaby]

My Dx was G9, node positive, no distant mets with a PSA above 300.

The DX was in spring of 2017.

I was treated aggressively with the max radiation (included pelvic area at a reduced rate), Lupron (was told to go 28 months minimum) and may have had Apalutamide for the same duration as ADT (part of a clinical trial vs. placebo).

My nadir was undetectable (<-0.002) about 1 year later.

I had a miserable time with the side effects. I won't elaborate much on that seeing as others in this post mentioned them. I quit after 16 months because the worst of them were ruining what I thought was the rest of my 'soon to end' life. I hope that you don't experience the worst of them -the good news is that some men don't have that much trouble with SEs ...

So I took an ADT holiday - which I'm still on.

My 'T' is within normal range and my PSA is rising. That was to be expected. I'll be 68 this year.

Last reading about 3 months ago was 0.20. My MO and GP didn't seem too concerned about that. I'm due for another next week and expect it to be higher.

Even though your prostate has been radiated, if it is still intact, it will produce PSA.

My GP said there is no sign of a significant cancer event happening to me at this point in time.

That's the way it has to be played for now because there are CTCs circulating tumor cells that we know exist because we tested for them post-treatment.

At the time of CTC testing the burden or scale that I recorded was quite low, so I could at least think that I'm still in this fight to try to survive this disease, as best as I could.

Your case suggests to me that you need to fight this disease aggressively. An ADT and radiation combo is probably the best route to go seeing as the current standard of care kind of points to that. Where I see as different from me, was that the 'seed planting' was never considered or offered. (I never asked - maybe I should next time I see him).

That is something that is now being held up as the best / better way to go.

Don't panic - there is enough time left to manage this disease. I recall thinking all kinds of illogical outcomes because I didn't know any better. The fact that I hated the ADT does not change my opinion on the need to take it for at least a specified period of time. Long term use is another question because that might be indicated if the disease would progress.

This forum is a good source of personal information and support. I certainly appreciate the members who share knowledge and compassion genuinely.

Do some reading and researching. It will help with your questions and outlook.

Keep us posted.

[Hidden]

I have been on Lupron for 1.5years with very good results. PSA undetectable. I, too, have been told by my oncologist that “we will have to wait and see” what happens when you stop Lupron in a few months and stop Zytiga and Prednisone, also have been taken for the past 1.5 years.