Looking for some feedback your thoughts and opinions of taking a vacation.
2021
September - PSA 16.2 - GLEASON 7 (4+3) - RALP - EPE - SVI - PNI - TERTIARY 5 AT THE BLADDER NECK AND 36 LYMPH NODES CLEAR
2022
PSA .1 ON 4/29/2022
PSA .3 ON 6/20/2022
PSA .4 ON 7/15 2022
PSMA PET ON 6/30/2022 SHOWED:
INDEX LESIONS:
Lesion #1: Right deep pelvis/posterior obturator lymph node, image number 236, measuring 0.5 cm, SUVmax 2.3, ordinal uptake score 1 (>/= blood pool, less than liver intensity).
EQUIVOCAL OSSEOUS LESIONS:
Lesion #1: Lucent oval osseous lesion left posterior T10 vertebral body, image number 137, measuring 0.8 cm, SUVmax 3.0, ordinal uptake score 1 (>/= blood pool, less than liver intensity). (Possibly degenerative).
Lesion #2: Groundglass lesion in the left iliac wing, image number 206, measuring 1.0 cm, SUVmax 1.8, ordinal uptake score 1 (>/= blood pool, less than liver intensity). Lesion is stable since CT 9/15/2021 series 601, image 64/111. (Possibly fibrous dysplasia).
Lesion #3: Subtle lucent lesion in the lateral left 5th rib, image number 117, nonmeasurable, SUVmax 2.2, ordinal uptake score 1 (>/= blood pool, less than liver intensity). (Possibly traumatic/inflammatory).
This was all followed up with Lupron Depot in July 2022 and 33 rounds of EBRT to the full pelvis and a boost to the lymph node that was 6 weeks from mid July to the end of August.
I have been on the Lupron just over a year and took my 3rd shot in July. I also started taking abiraterone in January 2023.
What are your thoughts about taking a vacation from the Lupron and the abiraterone starting January 2024?
Thanks for your feedback and insight!
Written by
Cyclingrealtor
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I think first and foremost you have to establish a long period of undetectable PSA. You won't know til you're there. More importantly, how long did your Doc say you should be on ADT?
I have been undetectable for the year of Lupron and abiraterone at this point.
This last Lupron will give me 18 months of adt by the end of the year - 2023.
The side effects of muscle loss and strength, shrinkage of my junk, a dead sex life, I'm sure some mild depression, significant joint pain now after strenuous activities, fatigue, all wear on me. Along with the fact that after 12 months on adt the chance of natural recovery of testosterone drops quickly.
I was only 53 and in a brand new relationship of 6 weeks when this started. I am BEYOND grateful that my girlfriend is the person she is; it has been a crazy two years. I have NEVER been on meds in my life until this mess. I have a good diet even prior to the PCa. I hike, practice yoga and cycle - so my lifestyle is in line to mitigate side effects. But they still persist.
I have Kaiser Permanente for health insurance. Because of their practices they typically don't have younger guys in their treatment. With that said the MO stated 2 to 3 years as there were no studies beyond that.
I see many guys on HU who have docs that discuss a strategy. My KP MO just says do what you want, it's a QOL issue. He doesn't discuss long-term metabolic issues or anything like that to build into the treatment.
I remember when this mess first started and reading a statement, you'll probably know more than most docs before long. And there are some super smart guys in this group. With KP, I don't have much faith.
3 Years on ADT before you can think of taking a vacation.
This is a controversial area among the relevant specific medical professionals.
Remember to gather the positive and negative experiences of others taking vacations- and the views of their MO’s- before taking the opinion of any one layman, stated as if fact.
I was 56 when it started. I was on for 2 years. Stopped and T returned in 3 months. Was off meds for aityle over a year. Had recurrence and back on ADT and restarted Zytiga. I tried Xgandi and hated it as much as it hated me. PSA back to .04 as of yesterday. Also on Kaiser and my doc is similar but will do what I want as far as blood tests etc. and I am ok with that. Saw my RO alot right after recurrence and decided to keep seeing him for his input. PET found some spots in upper spine and lymph nodes. He was going to radiate and then changed his mid, deemed to hard to hit them all with enough radiation.
My MO plan is 2 years on ADT and then reevaluate. Pretty sure I am on it for life.
I am still active but don't have painful joints. Maybe the Boswellia extract I take, maybe just lucky. I shoot for over 100 miles a week on 3 or 4 rides so maybe you ride more. I also play pickleball, hike. Do lots of yard work. The only thing that acts up is the damage from gout in my right foot and the arthritis in my right knee occasionally.
So as too vacation the choice will always be yours. My suggestion is if you do it have a good idea on what to do after you stop. Will you wait for PSA to hit 2 and then get scans? Thats what I did. At this point I am on the fence if it was risky ot not. Other options are to start ADT again at say .5 for example. The return of T is a double edged sword. If it returns quickly and you not cured the cancer will return with it. So hopefully your cured. My stopping was because my treatment was with curative Intent. Clearly I am not cured but responding well to ADT for now so life is good.
It ultimately comes down to whether the quest for improved QOL is worth the risk. I’m on my third vacation so I guess I think it’s worth the risk, at least for now. I don’t think I’m doing something that’s terribly risky, though some would certainly disagree. When I am no longer willing to accept the risk I’ll stop taking vacations.
If you’ve been undetectable for over a year I think it’s reasonable to consider it. Understand that the vast , vast majority of vacations eventually end. And your testosterone level may not come back or it may take several months for it to come back and your SEs abate, possibly only giving a couple of months of relief before you have to resume ADT. It can’t be accurately predicted.
Personally, I think your MO should give some input to your decision, particularly their assessment of the risks involved in your individual case.
No "vacations"!!! The adjuvant ADT is part of a curative therapy approach. Stopping and restarting ADT is like stopping and restarting antibiotics for a bacterial infection - it selects for the most resistant bacteria and guarantees a worse infection than you would have otherwise had. Similarly, a vacation from ADT before you've killed off the most resistant cancer cells assures that when it recurs it will be ADT resistant.
That’s how I feel about it too… it doesn’t make sense but I am not the person enduring all the side effects of those meds. I can understand why a vacation would be tempting.
Are you saying no vacations period or no vacations until a longer period of undetectable? If the later, how long ? Dr Scholz suggested 25-30 months adt and Zytega and 18 months undetectable.
So, what would be the marker for success and stopping ADT in his case ? It appears this is salvage RT + adjuvant ADT.....studies for situations such as his?
I'm tending to agree with this, although I'm not eligible for a vacation until another 18 months, at least. If I were younger, maybe I'd want to bring back my sex life. At 72, I'm willing to let it go. Exercises are important to keep the muscles and the bones strong, and it's not like I'd slack off on that just because testosterone was coming back. And it's been pointed out that it can be slow to build again.
I agree with TA on this, every time I had a vacation from these drugs the beast within came back stronger & I have been on this trip for 12 years now. ADT or T2 patches or gel for life now.
Never have, never will, the beast is locked up, if you let it out it will kill you. You might feel bad now, but you will feel worse when it revisits you.
I'm about 10 years in, all the things you describe are what we all experience, but you're keeping it at bay.
Hi, I don't think they've got worse, in actual fact I am dealing with it much better now. I do get tired particularly just before the Lupron jab is due ( 3 monthly ). I have osteoporosis and osteoarthritis. But I'm very active, I don't carry any extra weight, I walk daily, I'm always on the go.
It takes a long time to start to build up your stamina again. I'm on Zytiga 500mg per day, 5mg of prednisone + the Lupron.
People think I'm cured 😉, but they don't see behind the scenes 🙄. I think it's a mental thing, you must stay positive and not be impatient.
5 years in, from memory it took me about that amount of time to start to feel human again.
I am in my 10th year of Lupron injections (3 times a year). Fatigue is worse than earlier but I am 10 years older (78). Hot flashes vary but seem less intense and less numerous than in early years. I exercise and maintain my weight. Mentally I think I'm OK. I am enjoying life.
I have been on Lupron for 11 years and on Abiraterone for most of that time, except for 3 vacations I took during my first 3 years of treatment. For me, I think the side effects have not gotten worse and may have actually improved a bit. I don't get hot flashes as often nor as intense as I did early on. And- likely as a result of my recent Pickleball addiction, I have lost about 5lbs of the 20 lbs I put on very quickly when this odyssey (15lbs of which I gained in the first 6 weeks when I went from 150lbs to 165 )all began and I think I have more energy too. Good luck!
as far as muscle loss and junk schrinkage, there is a plan. Weight training to all Muscle groups for minimum one hour three times a week. . And viagra three times a week and give yourself an erection one way or the other while on viagra. I have followed that plan and no shrinkage and no muscle loss. Others here have done the same. Takes dedication but it’s worth it. As far as vacations, I’m on my second one. When and how long is a discussion to have with your MO.
Try it . But be prepared for the worst. You will feel better almost certainly, in the medium term.
Im 56 and healthy. PSA nadir of 9 with an intact prostate. 3 months off Eligard saw my T rise to around 850. My PSA also rose to 48 in that period of time. Groinal Lymph nodes got a little swollen but I felt fine.
After 4 months I thought it was time to Inject Eligard to see my response. PSA went from 47 to 27 to 16 to 10 over 2 months. I still feel fine.No worse then before Eligard vacation.
For me it was an interesting experiment with no negative consequences, so far.
Its Russian roulette. Is it a game you like to play?
Tadalafil 5mg twice a day may be more effective than sporadic Sildenafil combined with exercise with your girlfriend.
Making the distinction between a ‘vacation’ from lifelong ADT and quitting early on curative intent ADT matters. Your first shot at eradication is always vastly superior.
Still there is no consensus, because of the QOL issues. Data may support 2-3 years for curative intent and no vacations but the health of the patient factors in strongly. Any and all aspects of poor health are greatly exacerbated by ADT and should be considered.
Patients often make it quite clear they want out of ADT, and as time goes by more doctors are endorsing stopping early or IADT despite the risks.
I stopped a 2 year ADT protocol at 18 months on the recommendation of my MO at a major center of excellence, despite that I was tolerating it well. I am doing fine but time will tell if it was a mistake.
Regardless of what path you choose, you need to lift weights regularly.
My opinion: just don't. If it's really warranted talk to your oncologist about intermittent ADT, which means decreasing the dosage temporarily. I'm hopefully going to do that if I get another set of clear scans. I don't understand the medical terminology you're using but the only reason to cut back or stop ADT is if the side effects are debilitating. Are they?
I wouldn't recommend a vacation. My husband received a 6 month Lupron shot after his RP in April of 2021. Nothing else after that. He had a great 2 year run and his testosterone recovered. However, the beast reared it's ugly head again and now the cancer is in lymph nodes as far up as his neck. He is on Eligard, abiraraterone and prednisone now.
In my opinion it just isn't worth it to take the risk. I was never comfortable with him taking the vacation, but his MO at Mayo recommended it.
Which Mayo do you use? My son is transferring to the Phoenix Mayo due to a job change. I thought with your screen name DesertDaisy you might be using Phoenix too. Thank you.
RP in Nov. 2020, Gleason 8. One Lymph node had cancer. 2 years ADT with 18 months or so with Abi. Also had 39 radiation treatments. Have been been >.01 since the surgery (four tests prior to Lupron started and have stayed that way. Off now ( Dr. proscribed) and will see what happens. Still have the SEs and will be interested in October to see PSA and if any T is back. 71 so not real hopeful on that. Hope that ADT is not a lifetime presence.
It's an interesting topic, but I don't think anyone here knows for sure. I think the eligard / zytiga-prednisone and xgeva generate a lot of $$ for those prescribing it, as well as those providing it. The PATCH study seems to indicate similar results WITHOUT the horrible side effects, and it's about 1/10th the cost.....in my humble opinion, I think that's why doc's don't talk about it or recommend it.
I would say, that given your medical history, that you should not even consider a vacation until discussing this with one or two knowledgeable oncologists on the subject and also reaching undetectable for a long while.
We just had a individual ask about ADT vacation and he was on 1st and 2nd level ADT. Look for his recent post.
You need to come off ADT to see if the radiation worked and killed all your PC, otherwise how would you ever know.
So first are you using ultra sensitive PSA tests, you need to at this point or you have no idea how low your PSA goes. So first start getting regular ultrasenitive PSA tests. LabCorp goes to 0.006
The old PSA tests that measure to 0.1 don't tell you much. It like burying your head in the sand, get the ultrasenitive to 0.006
If you're getting down towards that low number (if you had prostate removed ) you'll need to come off ADT after significant time on ADT, and 2 years was recommended in the past but I too believe that has changed to 1 and 1/2 years. The 18 month period certainly has been the recommendation for a few years.
Testosterone should begin riding but it may take several months to stop the hot flashes and may take 6 months to get your T up to say 90% of what your normal T was.
Look for the recent question on this site in the last few days and see the attached link. It showed adaptive ADT resulted in longer life. Better QOL as well. Than continuous ADT.
We are all in a conundrum as more trials and data is needed to make best decisions based on a personal level. Good news we have many more treatments, not do good is sci h one is best for me? I don’t think anyone has the answer yet. Do what you feel is best for you within reason, it’s your life!
when the pre radiation treatment for pelvic nodes is low (<.5) then the benefit of longer adjuvant ADT over 18 months or two years is not so clear. Perhaps 6 months is sufficient. Have to weigh the harms of ADT over time vs any possible marginal benefit. It is a personal decision not religion.
I was in the same position and opted for just six months ADT with SRT as it is very difficult and harmful for me. It seems you are already at 18 months ADT with abi.
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