1. Do you regret it?
2. Did your cancer begin growing again? And or did it metastasize elsewhere
3. By taking a vacation did it extend the life of your medications?
4. Did they treat new lesions with radiation
5. What other benefits did you get?
6. How long did you go on “holiday”
I got a hint two months ago that I might be a candidate for this. Thank you for your comments!
Hi TuffNuttoCrack,
I didn’t exactly take a vacation but chemo, radiation and two years of Lupron and Zytiga combined with some unfortunate events had me so broken both physically and mentally my doctor agreed me stopping ADT early.
1. Do you regret it?
No. I would never suggest a vacation to anyone else, but I really didn’t have much of a choice at the time. Also, it gave me a year of feeling normal, a chance to recover - and a year of mostly fantastic QoL.
2. Did your cancer begin growing again? And or did it metastasize elsewhere
Yes. It’s active in my prostate again and spread to three new lymph nodes.
3. By taking a vacation did it extend the life of your medications?
Don’t know. I’m on Xtandi since only three weeks.
4. Did they treat new lesions with radiation
No. I’ve been maxed out with radiation in the area according to my doctor.
5. What other benefits did you get?
My body and mind recovered, muscles came back (with lots of training), sexual function almost back to normal and QoL improved greatly.
Again, I wouldn’t recommend vacations to others because of the dangers, but for me it was the right decision and even though it meant the cancer started again I still don’t regret it.
Thank you Mike. Everybody’s situation is different, our cancers mostly differ and you did what was right for you and your options were very narrow! Nobody can disagree with that. Of course I would like everyone to see all the good things happen that you mentioned during your vacation happen and not lose their place in line while continuing to get treatment. I believe it’s a given the cancer will restart. I was told that if it did, they would zap them with radiation when PSA started rising. PSA is an invalid marker for me as the height of my cancer it was measured at 6.
Yeah I have the same effects everybody else does, but am apprehensive that sitting back and waiting for them to start multiplying doesn’t make sense to me. The problem with androgen depravation therapy is you never know when it’s going to stop working. That is unsettling to me but it is what it is.
I’m a sceptic still.
Thanks Mike for your candid answers!
1. Do I regret it? Yes
2 Did the cancer begin growing again? Yes..first time in my bladder neck, second time on a vertebrae
3. Did it extend the life of your medications? Don't know for sure
4. Did they treat the new lesions with radiation? Surgery and Radiation
5. I felt much better w/o all the ADT/Zytiga side effects...however, looking back on it it was the wrong thing for me
Ron I am so sorry that it worked out that way. I can’t imagine the pain you were in with it jumping to your vertebrae. All the best as you continue treatment! Fight hard with everything your body will allow!
Apart from the "all or nothing" there is the "meet at half of the road" concept. That is, an adaptive ARSI dosage.
I don’t think my husband regrets the vacation but he has an appointment today to discuss going back in the drugs and perhaps radiating the one new met (on his first PSMA scan). I will try to remember to update this later after we know something.
Thank you and looking forward to your update!
He needs to go back on ADT and a second drug. Nubeqa was recommended. If they can safely radiate his one new bone met ( Near the field where they radiated the prostate ) and if his PSA returns to undetectable, he can try going off the meds again. If no radiation, no break from drugs.
I don't remember all the details of my 9 year cancer experience but I don't regret the vacations. Each vacation ended with cancer recurrence. The first one was a long vacation I think for two reasons: The one metastasis was radiated and I took enzalutamide plus leuprolide for about 22 months. The treatment was devastating and it took over a year for my testosterone to recover but the vacation lasted about 18 months. I had about six good months.
The last two or three vacations have been short, about six months each, but I've enjoyed my life so much more than when I'm on treatment. I don't know and likely will never know if the vacations prolonged effectiveness of the medications. This question can only be answered by some good quality prospective studies. It will probably be answered eventually.
I'm at the end of my current vacation since my PSA has been rising for three months. I'll get another PSMA PET scan in a couple of weeks, hoping they'll find a met that can be radiated. If the cancer is in the same area previously radiated to the max then it is possible I'll either be done with vacations or they will have to be shorter.
Vacation or no vacation is a personal decision you'll have to make with your physician but for me they are well worth it. Good luck and best wishes!
Very good insights that you can continue to come back and live a decent life!
1. Do you regret it? No
2. Did your cancer begin growing again? And or did it metastasize elsewhere. So far, no
3. By taking a vacation did it extend the life of your medications? Don't understand the question.
4. Did they treat new lesions with radiation. No
5. What other benefits did you get? Feel somewhat better.
6. How long did you go on “holiday”. Since April 2020, on Erleada and Lupron. Temporarily stopped Lupron July 2023. Three consecutive years with no tumors on scans (2022, 2023, 2024). Still taking Erleada.
Wow, that’s great! Thank you for sharing!
1. Do you regret it? Not one bit. My body was falling apart after 2.5 years on ADT and my thinking and cognitive abilities had been impacted as well. It took about 3 months to regain insulin sensitivity and 9 months to before I was able to write programs as efficiently as I formerly did before treatment.
2. Did your cancer begin growing again? And or did it metastasize elsewhere? Yes a metastasis was found in my shoulder blade after 12-13 months of vacation. However who knows if it was already there before but too small to detect.
3. By taking a vacation did it extend the life of your medications? No idea and I do not see how anyone would know for certain one way or another.
4. Did they treat new lesions with radiation? Yes I received 3 sessions of radiation to the shoulder blade.
5. What other benefits did you get? I was able to reverse most of my treatment induced issues and regain most of my muscles that I had lost despite having never stopped training.
6. How long did you go on “holiday”? It lasted 13 months.
Thank Mascouche. Your comments are very helpful to us who may be presented with a vacation option.
I'd say vacations are okay, but must be carefully monitored, if you have undetectable PSA and no serious metastases, like to bone or organs. However, you must realize that this thing is going to grow with or without ADT. It is a monster and must be treated as one.
1. Do you regret it?
Not yet!
2. Did your cancer begin growing again? And or did it metastasize elsewhere
Not that we can detect in PSA or scans thus far. I'm coming up on 12 months off treatment. I plan to talk to my MO about liquid biopsy, but maybe it's too early for that??
3. By taking a vacation did it extend the life of your medications?
As others have mentioned, this is a hard question to answer. No data for me on this yet.
4. Did they treat new lesions with radiation
No new lesions yet. I had RP, recurrence, and then triplet therapy. Mets were one bone and one pelvic lymph node, followed by IMRT radiation both to pelvis and original bone met. Was on Abi/Pred/ADT for 24 months.
5. What other benefits did you get?
My time off treatment has been great. T started returning after 3 mos and is back to normal levels now. QOL is completely back to normal other than dealing with Lymphedema in my left leg, and not being quite the runner I used to be.
6. How long did you go on “holiday”
12 months so far. Hoping for more
Praise the Lord that you are doing well! Due to scoliosis/other spine stuff I can’t run but boy can I walk! I Really happy to hear your positive results!
Liquid biopsy is meaningful if your PSA is above 5. I myself would not pay 5000 dollars. If your insurance pays than that is different.
Thanks Seasid.
My story, 10+ years since diagnosis...study of one...
I don't count the time after surgery or SRT as treatment breaks, so twice:
1. Do you regret it? No, life off ADT is definitely better, the side effects of fatigue, muscle and joint stig=ffness, hot flashes and genitalia shrinkage gone.
2. Did your cancer begin growing again? And or did it metastasize elsewhere Yes, still, confined to PLN system, no bone or organ
3. By taking a vacation did it extend the life of your medications? Well, I have yet to become castrate resistant...
4. Did they treat new lesions with radiation. Yes.
5. What other benefits did you get? Just the afore mentioned ones, relief from the side effects
6. How long did you go on “holiday”
First time after completing triplet therapy in May 18, resulted in roughly a 4-1/2 year off treatment.
2nd time after completing doublet therapy in April 2024. Too early to tell the 2nd time, labs coming up in early October...
For me and my PCa, I have been able to make decisions about defined treatment periods based on clinical data - PSA response, imaging.... The opposite is true, when I am off treatment, I actively monitor and have decision criteria to go back on, three or more consecutive PSA increases, PSA between .5-1.0, imaging results...
I have also factored in the goal of not becoming castrate resistant by staying on ADT indefinitely.
Will my decision making work for oths, given the heterogeneity of PCa, not sure.
Kevin
I’m very grateful to you Hawk 56 for sharing your experience which are very positive. I will see my oncologist Tuesday. It’s a tossup for me as my cancer is so rare and aggressive. I want to thank you and all of our members for sharing, and the experiences of nearly all seems overwhelmingly positive. Thank you!
When is it time to quit treatment?
Xtandi, how long could it take to work?
How long did ADT work for you? How long did Xtandi/Zytiga work?
vacation away from treatment 
Dental work + Delayed treatment
