HealingWell
Search Close Search
☰

ADT Duration for High Risk PCa

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/28/2013 8:19 PM (GMT 0)
I started Lupron in January 2012 prior to 45 IMRT treatments for a Gleason 9, T3B biopsy/diagnosis. I was told by my Radiation Oncologist that he wants me on Lupron for three years after the end on my radiation, putting it out to May 2015. I read a recent study that suggested for PCa, 18 months of ADT is basically equivalent to 36 months as far as “outcome”. I talked about this with my RO and he basically dismissed it and is still sticking to his recommendation. The side effects of ADT continue to be extremely debilitating for me. I have therefore made a decision based on quality of life vs. long life to potentially stop the Lupron after 2 years in January 2014. That is still 7 months away and I realize things can change. Am I making a choice that I will regret? Does anyone have any thoughts on this?
Posted 5/28/2013 8:37 PM (GMT 0)
Buckeye,

I had a similar discussion with my Medical Oncologist about that study. He has me on two years of ADT following my adjuvant IMRT. I pointed out to him that the study showed that three years wasn't provably better than a year and a half and I asked if we couldn't shorten my sentence to 18 months. He replied that the study was small and because of that the error bars were large. If you look at the raw data you will see that three years was noticeably better than 18 months but the error bars overlapped so the study failed to prove that three years was better. Neither did it prove that 18 months was just as good. He says he is confident that a larger study with more participants and smaller error bars would show the same difference and prove it, too.

That said, I hate my ADT and am very sympathetic with your decision to call enough enough.
Posted 5/28/2013 8:46 PM (GMT 0)
When did the more severe SE hit?

Mel

Posted 5/29/2013 12:55 AM (GMT 0)
Buckeyelover,

I'm a Gleason 9 as well, although with a smaller volume of G9 cancer. (Yet with a higher pre-treatment PSA if I'm reading your sig correctly.)

For my part, my medical oncologist has me on 12 months of ADT and mine was in conjunction with HDR brachy and IMRT. 12 months is on the short side compared to most, although I'd have to say my oncologist is one of the top prostate cancer specialists in the country so I'm comfortable with his recommendation.

There have been other posts on this topic on this forum and, like pretty much everything involving PC treatment, there's no definitive answer. Some here have chosen to stop early for the very reasons that you're stating--it's severely impacting their quality of life. Hopefully they will weigh in.

I'm only six months into my 12-month sentence and it's no walk in the park so I can only imagine what you're feeling after being on this much longer. I don't think you're necessarily making a wrong decision, but it will be interesting to see what some of the more experienced members here will say. All the best.

Michael
Posted 5/29/2013 12:54 PM (GMT 0)

Mel….My side effects started about the 4th month with hot flashes. This was just after my 2nd 22.5mg 3-month Lupron injection. Every month from there, additional side effects along with the severity have increased.

PeterDisAbelard, Michael, and Southern Comfort…..I really appreciate you giving me some insight and advice based on your experience. Thanks very much. The best way to sum it up appears that I need to stay the course until it gets totally unbearable.

Here is a bit more detailed info with regards to my experience with the evil witch concocted drug called Lupron:

I’m experiencing all the typical side effects of ADT therapy with the exception of enlarged breasts. Hot flashes (40+/day), loss of muscle mass and weight gain (Despite strength and aerobic training 4 times/week.), total loss of libido, bone density loss (Despite Vitamin D and Calcium supplements.), joint pain, periodic cognitive issues, insomnia, fatigue, and depression.

No issues with ED until October 2012, then completely lost all ability to get an erection. Radiation oncologist suggested that it was IMRT related and prescribed PDE5 oral meds. Daily 5mg Cialis, 100mg Viagra for intercourse, and use of VED for “penile rehabilitation”. No response initially, but ability has begun to return after 6 weeks.

It's now May 2013, and my PSA continues to drop. 0.01 with T of 12.8. ED and depression are still an issue, but it is getting better. Still using daily 5mg Cialis, but have added weekend 20mg Cialis, and 200mg Viagra along with daily VED use. This still allows Mr.Happy to come out to play but requires very precise prior planning. My counselors and psychiatrists are working wonders. The anti-depressants of Wellbutrin, Zoloft, and Trazodone are certainly help too. I now feel like I have more energy despite ADT!!! Urologist has also put me on monthly Xgeva injections to combat bone density loss and I am tolerating that very well.

Posted 5/29/2013 3:58 PM (GMT 0)
Buckeye:

Thanks for the reply. I am 2 1/4 months since my initial 4-mos Lupron shot (plus taking Casodex).

So far, I have sensitive breasts and some definite fatigue, usually in the form of waking up in the morning but not feeling well rested. So far, no weight gain, cognitive issues, emotional issues. I am getting the hot flashes, probably 1-2 per hours, but it's not terrible.

But I am finding the SE really sneak up on me. Very subtle.

Anyway, I'm sure I have plenty to look forward to! Craps.

Also, getting major blood tests tomorrow for routine physical plus that all-important PSA.

I guess I'll see how things like my liver, etc., are doing!

Mel

Posted 5/29/2013 5:18 PM (GMT 0)
Mel,

I'm glad you are getting some blood work done. As part of my company's annual physical I too had some blood work done and was able to compare the 11 months on Lupron in 2012 to no Lupron in 2011. Here are the significant findings:

RBC DOWN 4.58->4.14

Glucose UP 88->103

Cholesterol UP 205->244

Triglycerides UP 113->152

HDL cholesterol UP 49->64

LDL UP 133->150

While the good result is my HDL improved, everything else is going the wrong direction despite a huge increase in exercise and a total change in diet. (No red meat, no white anything-sugar, rice, potatoes, increased fruit and vegetables.)

You are spot on with regards to the SE's sneaking up on you. Some were very subtle as you mention but others were an absolute smack upside the head. I remember my RO asking me if I wanted a presription for Viagra. (This was 5 months post IMRT and 10 months on Lupron.) I quickly told him NO, I didn't need it. He then asked my wife if I needed it. She answered NO too, but said why don't you give us the script anyway just in case. Well, 2 weeks later...BAM! Total ED comes and the Viagra didn't worked. Back immediately to a different RO in the same group. She matter of factly says that she's surprised I lasted this long...and by the way...it's permanent due to the radiation!!! She then finishes with, "No worries. You can always get an implant!" Holy crap I balled like a little baby in front of her and my wife. I'll never forget that "caring" chat with my RO!!!!! Luckily the RO was wrong and I have recovered with the help of massive quantities of PDE5 meds. This has been my saga all along with both my URO and RO....No warning about SE's, and then during my follow up visit every 3-months it's..."Yes, some men MAY experience that." Well no crap doc...when are you going to give me some warning???

Another thing you may want to ask your doc about is getting a bone density scan like a DEXA scan or similar. I made the mistake of not demanding a baseline, only to eventually find out that osteopenia was setting in. Hence now the monthly Xgeva shots. (At $4,000 a pop! Thank God for insurance.)

Hope this helps...Buckeye

 

Posted 5/29/2013 5:41 PM (GMT 0)
Buckeye:

  • I did get a dexa scan before starting HT and it did show osteopenia in one spot

I am starting fosamax this weekend.

 

I have a degree of ED (since surgery, actually). Frankly, given the fast-rising PSA with my PC, the ED  situation has been on the back burner for both of us.

 

I strongly suspect my HT SE situation will worsen significantly.

 

BUT my PSA has gone from 17.55 pre-HT to 0.57 a month after my Lupron shot. As I said, my next PSA is coming up (give blood tomorrow, see doctor for all the results on Monday).

 

I suspect we will be adding a statin soon!

 

Mel

Posted 5/29/2013 5:58 PM (GMT 0)
I am only in my first 4-month Lupron that was given March 28, 2013. Will take the second 4-month treatment on August 1, 2013, the day I am Medicare eligible, only 3 days after normal July 28 renewal date.

Not sure if was just a target to see where I stand then or a firm treatment plan but the current plan is 18-24 months on Lupron, possibly adding Xgeva after my recent DEXA bone scan is analyzed for osteoporosis.

After 18-24 months assuming no alternate pathways independent of testosterone, we will evaluate to see if Intermittent HT is an option.

I suspect a lot will depend on future bone scans to see if bony mets remain <=5 in number and whether they are shrinking. Ditto for my prostate @ 48.4 cm.

So not really far enough along to answer your question other than what the forecast du jour is.
Posted 5/30/2013 1:47 AM (GMT 0)
G9(all 6 positive cores out of 12), , cT3a (PNI, EPE, etc.)

My RO recommended 2 years of ADT, Lupron monotherapy, started 8 weeks before IGRT, and ending 2 years from initiation (not from end of IGRT).
Posted 5/30/2013 12:59 PM (GMT 0)

Michael_T said...
Buckeyelover,

I'm a Gleason 9 as well, although with a smaller volume of G9 cancer. (Yet with a higher pre-treatment PSA if I'm reading your sig correctly.)

For my part, my medical oncologist has me on 12 months of ADT and mine was in conjunction with HDR brachy and IMRT. 12 months is on the short side compared to most, although I'd have to say my oncologist is one of the top prostate cancer specialists in the country so I'm comfortable with his recommendation.

There have been other posts on this topic on this forum and, like pretty much everything involving PC treatment, there's no definitive answer. Some here have chosen to stop early for the very reasons that you're stating--it's severely impacting their quality of life. Hopefully they will weigh in.

I'm only six months into my 12-month sentence and it's no walk in the park so I can only imagine what you're feeling after being on this much longer. I don't think you're necessarily making a wrong decision, but it will be interesting to see what some of the more experienced members here will say. All the best.

Michael

I'll comment on Michael's update because we have so much in common. I too was given a lengthy initial ADT sentence and decided to go with the 12 month duration. So far so good!
Posted 6/1/2013 6:04 AM (GMT 0)
My RO wanted 2 years on HT..But after 14 months and an undetectable PSA, I talked him into letting me off the hook..Six months later, with my testosterone amazingly back up to 580, alas, my PSA moved up to 0.5 and I am back on the Eligard for the duration...Would have staying on the HT for the full 24 months made any difference? Who knows......
Posted 6/1/2013 10:56 AM (GMT 0)

Fairwind said...
My RO wanted 2 years on HT..But after 14 months and an undetectable PSA, I talked him into letting me off the hook..Six months later, with my testosterone amazingly back up to 580, alas, my PSA moved up to 0.5 and I am back on the Eligard for the duration...Would have staying on the HT for the full 24 months made any difference? Who knows......


Man, I guess the second guessing will never end with this disease. There are so many conditions, so many treatments, and so few clear projected outcomes, that it seems impossible to ever be sure you're right about anything.

What a mind-trip. My intent is to commit to this treatment plan, and ride it out with a forward focus. As an engineer, we always review our decisions so the next time we make them better. In my individual case, there won't be a next time so reviewing like that is not productive for me. It may help others, so documenting is great, but it's not helpful for me to question my decisions. We all make the best decision we can at the time with the information available. Later events may prove we could have made a better choice, but we can't know that at the moment.

I'm on a 2 year ADT plan. Is 3 better? 18 months good enough? "Permanent" ADT better? No one can say, apparently. Studies give indications on populations and percentages, but nothing seems to define it for any individual.

You pays your money and you takes your chance....
Posted 6/1/2013 1:24 PM (GMT 0)

Fairwind said...
My RO wanted 2 years on HT..But after 14 months and an undetectable PSA, I talked him into letting me off the hook..Six months later, with my testosterone amazingly back up to 580, alas, my PSA moved up to 0.5 and I am back on the Eligard for the duration...Would have staying on the HT for the full 24 months made any difference? Who knows......

Really.....my T levels are still on the low side(according to my Family Dr) 12 months later and because your PSA spiked(which that say is normal) to 0.5 you were put back on HT?
Posted 6/1/2013 4:16 PM (GMT 0)
Dr. Lam seemed to indicate about 8-12 months and then go intermittant if my PSA behaves!

Mel

Posted 6/1/2013 9:33 PM (GMT 0)
Zufus

You always seem to mention this or that EXCEPTION.

I would be hesitant to drop ADT based on this or that exception.

Mel
Posted 6/1/2013 11:09 PM (GMT 0)
I was failing on ADT3 did you miss that?  Will remove my blasphemous posting (lol).

Post Edited (zufus) : 6/1/2013 5:18:02 PM (GMT-6)

Posted 6/1/2013 11:51 PM (GMT 0)
Z:

Were you talking about yourself in that post?

No need whatsoever to remove your post.

I'm just pointing out that the exception should not create the rule.

Mel

Posted 6/2/2013 1:57 PM (GMT 0)

compiler said...
Dr. Lam seemed to indicate about 8-12 months and then go intermittant if my PSA behaves!
Mel

or did you mean misbehaves?
Posted 6/2/2013 3:29 PM (GMT 0)
I did 12 months of ADT3 before going intermittent. I had 3 recommendations for HT with SRT, one 3 month shot of Lupron, 2 years of Lupron starting with 30 days casodex, and 12 months ADT3.
Posted 6/2/2013 3:44 PM (GMT 0)
FOX:

Definitely BEHAVES!

Mel

Posted 6/2/2013 4:18 PM (GMT 0)
Buckeye,

I stopped after 19 months and my RO and URO wanted me to stay on for 24 months. i am on vacation now but I will send you two studies that show 9 months and 18 months have the same outcome as 36 months? If I could turn the clock back I would have stopped after 12 months.

Good luck,

Dave
Posted 6/2/2013 4:33 PM (GMT 0)

compiler said...
FOX:
Definitely BEHAVES!

Mel


Really? I would have thought the opposite.....if your PSA behaves(as in a low normal status) do nothing and if it misbehaves(as in begins to rise and not just a spike) go back on HT(as in intermittent)
Posted 6/2/2013 9:32 PM (GMT 0)
Right now, I am only 3 months into HT, so BEHAVES is what I want...for now

Mel

SEMANTICS!

✚ New Topic ✚ Reply