Hello all - I’ve read this site for about a year but this is my first post. I’m grateful for your collective wisdom and experience, and for your willingness to share both.
Here’s my story: married dad of four in the Northeast. Diagnosed at 53, February 2019. Gleason 3+4, 11 of 12 biopsy cores cancerous with 60 to 80% involvement. PSA 38. Scans clear of distant Mets. RP on May 17, 2019. Cancer extracapsular, in seminal vesicular, nerves, bladder, and in 5 of the 17 lymph nodes they removed. pT4N1M0. Post-surgery PSA never went below 2. No radiation due to risk posed by ulcerative colitis. Started Lupron September, 2019, shots every 3 months. PSA and Testosterone undetectable in December, 2019. Started Lupron vacation in June, 2020. Treating at Dana Farber, Boston, with Dr Sompavdeh. Side effects are typical: weight gain, constant fatigue combined with insomnia (which is a heck of a combo), zero libido, and difficulty recalling words. In the last 30 days, noticeable increase in swelling in hands, ankles, and feet, and a lot of muscle and joint pain regardless of exercise level.
Next dr appt mid-June. Plan is to start Lupron vacation. Dr says that overall survival isn’t different whether one stays on Lupron without a break or one takes a break. So, night as well get a break from the side effects.
Any thoughts? Make sense to take a vacation, assuming the blood tests come back as usual? Many thanks for your advice.
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Dadof4
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The thing about vacations is that sometimes the testosterone doesn't recover fast enough to give you a real break, although in younger men like yourself, it often recovers faster. Some doctors believe that using a stronger hormone therapy (e.g., adding Zytiga, Xtandi, or Erleada) during the "on cycle" may result in a longer vacation - but I don't know if you will get as long a break from symptoms that you want. It was once thought that Casodex could extend vacations, but that was proved to be incorrect.
Another strategy is to go after the symptoms. Estrogen patches can lower testosterone, reduce hot flashes, raise libido, increase bone strength, and help preserve lean body mass. The lack of sleep and loss of memory are likely related. Talk to your doctor about sleep aids.
Some men have been on Lupron for a decade or more. I’ve been on constant adt five years now . I did orchioectomy 9-17 to stop Lupron shots .Im still on a pill form of adt that stops adrenal production of t. Many side effects from no t. For me it’s a trade off for more time walking the planet. The first two years were the worst for me . Good luck with professional help taking a vacation.🌵😎
You don't recover from Lupron instantly. By the time your "T" recovers to the point you start feeling better, vacation time is over..Also, if your cancer comes back aggressively, it can be difficult to get the monster back under control...
IMO...Its a good idea to go for Intermittent androgen therapy....with close monitoring of PSA and T dynamics.
More studies are now indicating that Intermittent ADT prolongs time to developing castration resistance. And over a dozen well crafted clinical trials have revealed that
Intermittent ADT is NON INFERIOR to Continuous ADT. There is no significant difference in OS, CSS and PFS in these studies.
I am on Intermittent ADT with my first OFF cycle and it is 6 months today after my last luprolide Inj. ADT side effects have gone down about 50% and energy level has improved.
PSA ,T ,ALP, Albumin, Hb, LDH, CRP etc are being monitored every 2 weeks. Last PSA 0.2, Total T 2.0
Planning to consult Dr JingSong Zhang in Tampa . Dr Zhang is top researcher in this area of Evolutionary dynamics in treatment of PCa.
How did it go with zhang. I had an appointment with him 3 years ago but moved away. I take breaks but go to to PSA arrive 13 after 6-7 months then go back on lupron.
I have not consulted Dr Zhang yet. My PSA continues to remain 0.2 but Total T have started creeping up ..last week it was 9. I have already completed 7 months of OFF period and not being on any ADT . Will keep monitoring closely every 2 to 3 weeks.
Not on any ADT/AntiAndrogen meds...just diet full of veggies (cruciferous veggies, tomatoes, Ginger, Turmeric, Onions ,garlic and so many others) Ionic Zinc with half cup of Onion juice, (quercetin)
I'm not sure how your T is under 10 if you are not on any ADT. When Im off ADT, my T goes above 500 before I go back on the ADT. Those healthy eating habits will help.
You have aggressive cancer. You can try intermittent adt for at least 13 months but it’s unlikely to work. I tried it and PCa shot up every time I stopped it. Then I had scans which found mets. See my profile. I switched to estradiol in 2/19 and have stayed in it since then with few side effects recognizing I couldn’t stop systemic treatment due to my aggressive cancer.
It’s aggressive because it’s high volume and outside the prostate in SVs etc. plus fast psa dt. SSo it will need constant treatment. Mine is aggressive because it is G9, inSVs and fast dt but low volume.
Check my profile. I was on adt off and on since 2014. I could not stay off due to fast doubling time and I hated the side effects of Lupron. That’s why I switched to estradiol.
So you are still hormone sensitive, correct? Do you need to be hormone sensitive for estrodial to be effective? If estrodial stops working then does that mean Lupron will likely be ineffective too, and vice versa?
I was “castrate sensitive “ ( below 20) until May when T was 80 but psa was still <.1 . Not sure what I’ll do next when in August I get another blood test if psa increases. My urologist isn’t worried about my T level.
I don’t think your memory issues are from a lack of sleep as mentioned above, I experience the same along with cognitive issues no matter how I sleep, which is usually pretty good. Memory issues are pretty common with ADT. I’ve been on Lupron for 6+ years now and Xtandi for close to 5 years. My cancer is more advanced and aggressive than yours so my docs have recommended continuous ADT. I tried stopping Xtandi once for relief of SE’s only to see my PSA rather quickly leave undetectable status, I immediately resumed Xtandi and rejoined the < club.
I’ve used estradiol patches for years and they do provide relief of hot flashes and help maintain bone health as well as another layer of HT. As for the rest - libido etc, nah.
Getting back to the sleep issue, I often find that the caffeinated products I use during the day to help manage fatigue can have an big impact on sleep. I have learned through trial and error to avoid any caffeine after about 1:30 pm. I also avoid naps in the late afternoon, instead opt for just closing my eyes for a bit and resting.
Alas, I do not know what the research says about ADT holidays; it seems risky to me.
And, as someone noted, it takes MONTHS for the ADT (i.e., Lupron) side effects to begin to subside (my last injection was in May 2019; 3 mos duration. So, in theory, my T should have returned - it's been 9+ mos - but, no. Came roaring back (LOL) and now is at 107 (was 70 in Feb 2020). Side effects were devastating for me. Hope not so for you.
The only things that seemed to help me were exercise and medical marijuana. No gym bunny here but forced myself to go 5-7 times/wk. No physical results that I could see but just made me feel better emotionally. And the medical marijuana has really helped with sleep; don't like to smoke so suck on a gummy before bed. Have actually slept through the entire night!
Anyhoo, good luck. Hope you're feeling better soon.
You have good advice here on the ADT question. I second the suggestion of estradiol patches (or topical gel) to supplement for the physiologic as well as symptomatic benefits. You could even continue the estradiol while off the ADT drug. It can work to extend the time of castrate T while still feeling pretty good. Research "PATCH" on this site.
On another consideration. If you still have no evidence of disease outside the pelvis (by repeating the best available scans) then perhaps you could re-consider SRT to prostate bed and pelvic nodes. I understand the ulcerative colitis substantially increases risk. However, the added visceral fat you accumulated from ADT may actually provide some protective separation of colon from nodes. This could be discussed with your RO for feasibility. Would have to consider that worse-case may require colectomy, which is often the outcome with UC anyway when severe. I am not recommending, just opening it for consideration of possible risks and benefits.
Sorry to hear about the tough experience with Lupron. Vacations are popular but potentially ineffective and risky for the reasons mentioned here. I’m not telling you to not take one but you can understand why some would advise against it.
The addition of other drugs to combat the sides and assist treatment may be helpful it’s true.
However, I’m one of those on Lupron (started last September as you) who has no fatigue, no hot flashes, no weight gain memory issues or anything else other than loss of libido and some genital hair.
I credit my exercise level, particularly weight training. Many others say the same thing. Extensive proof in studies bears it out as well.
You say you have all of these sides ‘regardless of exercise level’. No offense but this may or may not be true.
If you are honestly working out as hard as you safely can then fine, do what you can otherwise. My experience with friends, family etc-especially those who are older-is that they’re simply not nearly as dedicated as they need to be.
My older brother is a newly retired doctor. He’s brilliant, father of 5, long and successful career. He walks and nothing else. I tell him he’s weak and needs to intervene. He says I know and laughs it off.
I can’t imagine letting Lupron do it’s business without hard exercise, the consequences are vile. Just be sure you’re doing all you can.
Intermittent ADT isn't inferior to continuous, though, as others have mentioned, the length of vacations may not be very satisfying.
People at Johns Hopkins are studying bipolar ADT (testosterone replacement to commence the vacation) with great success. This prolongs the vacation considerably and is believed to "fool" the cancer better than IADT, delaying castrate resistance.
From what I read, you are undetectable with medication. I don’t know if a vacation is wise. However, you won’t know until you stop medication. Be sure and have monthly PSA and T tests if you stop. Then you can be on top should your cancer rear it’s ugly head.
Withdrawal from Lupron is surprisingly, relatively long in duration.
I'm on an ADT vacation now -which started in 2018. It took nearly 1 year before my numbers started to move from post treatment into 'normal recovery ranges'.
1.5 years later - my 'T' is in the lower normal range and my PSA keeps climbing (last count was 1.3 about 3 weeks ago)
I was undetectable when I started the vacation.
Don't know if I'm still good to go or will be back into treatment due to a recurrence - but the
holiday was good - hope to do i again if I can cycle .....
Greetings Dad of 4, "Hello all - I’ve read this site for about a year but this is my first post." Hate to break it to ya but you owe us a year's back rent.....
"In the last 30 days, noticeable increase in swelling in hands, ankles, and feet, and a lot of muscle and joint pain regardless of exercise level."
Why don't you call your Onco and inform him of this issue... don't wait until the middle of this month.
Sleep issue - do what I do.... build a log cabin in your head when you lie down to sleep.. piece by piece.... I never get past the first floor... catch those zzzzzzzzzzzzzzz... Mind over matter...
Hi there. I'm on my second "holiday". First one lasted about 8 months. This one about the same. There has been new science on this saying its a good thing. I love it. Gives me time to detox. Nice to have testosterone. I am trying the COC protocol Beginning next week. Also check out BAT therapy as well. Good luck.
So no bony mets huh? Well I was diagnosed with metastatic prostate cancer at 43 and did all the usuals too. Not saying my decision is right but I took a 1 year break from everything and it was wonderful! No erections as they have to remove 1 nerve due to local infiltration but having testosterone again was a joy. I travelled all over the world and even made it to the top of Mount Kilimanjaro. My PSA was undetectable after my RP but was positive after 6 months and then positive scans at 11 months. So likely my disease came back quicker by PSA and radiographic evidence than it would have if I just stayed on Lupron by in the end most metastatic disease progresses to be smarter and resistant to depriving testosterone so I have no regrets. It a tough decision by if your oncologist is promoting it then heh...good luck warrior
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