More Lupron, or not?

[billfenley2]

Hi friends, A year ago, I had brachy boost therapy, and I'm now on month #14 of 18 months of Lupron. I know some other places give 24 months of Lupron, and I asked my doctor if he thought maybe, given my high-risk status, I should add the 6 months of Lupron (original PSA was 49, Gleason 9. My PSA nadir to date is .2.) He said that though he believes the evidence favors 18 months, he thought 24 months wasn't unreasonable. I've been doing fine on the Lupron in terms of side effects, but I know there are unseen costs. Do you think I should add the 6 months? Thanks!

[Magnus1964]

If Lupron is working for you I would not advise changing. Milk it for all its worth.

[billfenley2 in reply to Magnus1964]

Thanks, Magnus. Actually what I'm wondering is if I should continue on the same thing for an additional 6 months, but thanks.

[Hidden in reply to billfenley2]

I would .. 😎

[Hidden]

I would add the extra 6 months, but then I've already been on ADT for 2-1/2 years so maybe I'm biased.

[billfenley2 in reply to Hidden]

Thanks, Gregg.

[Tall_Allen]

Good nadir! How do you feel about adding 6 more months? It's anyone's guess whether it will make a difference, but if it gives you more assurance and the side effects are tolerable, it's not unreasonable.

[billfenley2 in reply to Tall_Allen]

Wow Allen, my doctor was happy with the .2, but I was worried it isn't undetectable; your opinion means so much to me.

[Tall_Allen in reply to billfenley2]

I prefer to take an optimistic approach -- To me, it's a sign that cancer cells are still dying.

[billfenley2]

I'm also glad you sound 50/50 about the extra 6 months. I'm inclined to do it, but I thought you'd say even 18 months is overdoing it.

[G9doingfine in reply to billfenley2]

Keep in mind, you may not regain testosterone quickly after Lupron cessation . So you may get the 24 months anyway. If you go 24 months on Lupron , and it takes another 6 months for T levels to return , that is 30 months

[G9doingfine in reply to G9doingfine]

But ask a pro ....

[billfenley2 in reply to G9doingfine]

Thanks!

[westof]

Hey Bill,

Dx 1 year ago, Gleason 9 stage 3. Since then I've had 3 quarterly Lupron shots (along with casodex and now Zytiga and prednisone). HDR Brachytherapy (April 26) and completed 25 days of IMRT July 1st.

Upon completion, I asked both of my MSK docs (RO & MO) how long I had to continue ADT. They both agreed on 24 months. I've been VERY lucky! No side effects from anything (except for libido loss and ED)

It is purely coincidental that I read your post today. This morning I ordered a penis pump ( just to keep whats left of the little guy in shape for his triumphant return!). Since March my PSA has held steady at <0.014 and my BMP is better than it was 5 years ago. I (we) just have to wait and see...

Best

[billfenley2 in reply to westof]

Reply below

[jfoesq in reply to westof]

Hey Westof-

Are you treated at MSK in NYC. I have been treated there for 7 years- the first 5 with Dr. Scher and the last 2 with Dr. Rathkoph. I had been on Lupron ( sometimes with Zytiga) INTERMITTENTLY for 5 years but am now on it CONTINUOUSLY (without Zytiga). Just wondering who your doc is at MSK, if you are at NYC.

[westof in reply to jfoesq]

No, MSK has new branches in Norwalk CT and Westchester, NY. I did have Brachy in NYC, however,my IMRT was done in Norwalk. Dr Shasha is my RO and Dr Richard Frank is my MO( He is part of the Whittingham Cancer Center @ Norwalk Hospital and a world class MO).

I believe that Dr Shasha may work in NYC a day or two during the week. He did my Brachy. Both of them work closely together to benefit the patient!

Hope this helps.

[jfoesq in reply to westof]

Thx

[BruceSF in reply to westof]

Hi Westof,

I'm in a similar situation - I had adt+zytiga for 6 months before hdr brachy + ebrt which took another 2 months (G9 + node positive). I figured two years total ADT +zytiga would be enough. I saw my UCSF rad onc last week and he thinks I should have at least 2 years of ADT after finishing the ebrt! Does your guy think it's just 2 years total? My 2 years total will be up in Feb 2020, 2 yrs post ebrt will be October 2020...

Bruce

[westof in reply to BruceSF]

Hey Bruce, I failed to mention I have no mets. However, your RO is giving you the same advise that both of my Doc's gave me. After ebrt both advised an additional 2 years (I already had 3 Lupron quarterly shots). so, if my math is right 3+8=11(I'm not the sharpest knife in this forum's drawer!) your RO is spot on.

Best

[billfenley2]

Thanks westof. Congrats on all your good work (just read your post of 2 months ago) and your good numbers & attitude etc. I'm envious of your quick trip to undetectable PSA, and of your being treated at MSK! I'll consider that two good votes for my adding the 6 months. Best, indeed.

[Hidden]

Some guys have had success with Lupron for 8 yrs. I’d stay on if it were I. Especially since you don’t suffer too badly from side effects . I was on Lupron and a test adt drug for 18 months until I did orchiectomy and stopped the Lupron shots . Good luck ..

[billfenley2 in reply to Hidden]

Thanks Lulu, and thanks for your good H.U. posts and your good cheer.

[Hidden in reply to billfenley2]

We must keep our chins up ,,even through drudgery ...peace amigo🌵

[billfenley2 in reply to Hidden]

You too amigo.. good amigo icon..

[cdwalston]

Greetings! In September I will be completing 15 months of lupron teeatment. My urologists surgeon extended my 12 month treatment to 15 months, and I have no complaints, other than severe hot flashes and fatigue with this last round of shots. My PSA is undetectable at >0.05, and I my RP surgery was in July 2018.

[billfenley2 in reply to cdwalston]

Thanks, CD, and good luck!

[cdwalston in reply to billfenley2]

Thanks!

[Hidden in reply to cdwalston]

Good news🥳

[DarkEnergy]

Hi,

I was gung-ho in taking ADT vacation when my PSA nadir <0.02 after 10 months of treatments. But my Dana-Farber doc said to hold my horses! Suggested another 8 months or more depending on continuing undetectable PSA results.

Current treatments: Lupron (3 months shot) with Zometa infusion, Zytiga/Prednisone and Taxotere. I get a lot of questions here, why we added chemo after successful ADT run.

Anyway, you had brachytherapy and non-metastatic, so IMHO will keep up with the assault for awhile longer.

Gee, perhaps I'm nuts, Dx PSA 1000+ with extensive pelvic metastasis, lymph nodes and vertebral involvement. Yeah, hear you - getting testosterone back overwhelms the mind.

[billfenley2 in reply to DarkEnergy]

Keep up the good work & results, and thanks!

[Hidden in reply to DarkEnergy]

Testosterone is a life force for us men..

[larry_dammit]

Been on lupron/eligard now for 3 years. Working for me 😀😀

[billfenley2 in reply to larry_dammit]

Excellent, thanks Larry, keep it up.

[Hidden]

My md Anderson MO wants me off in 18 months. They go by the results of trials and have no real evidence of what will happen to you specifically so it’s your call. In their defense they know the same about 24 months. I’m using the fact that you will be on it for life when PC reoccurs and am doing the 24. My doc feels that after 24 months if it has not killed it then it won’t ever. I’m including Zytiga along with the lupron. We roll the dice

[billfenley2 in reply to Hidden]

Thanks for writing Carlo. Do I understand that you're taking the Lupron now, and are you non-metastatic but still adding the Zytiga? And you're scheduled to stop the Lupron after a total of 18 months? Thanks, Bill

[Hidden in reply to billfenley2]

I’m on the edge of being metastatic for sure with a tumor outside the capsule. Bone scan showed nothing but they don’t show much. It is in the nerve bundle from an MRI for sure but nowhere else (for sure). They don’t know. I let them drive my psa down before I knew the pet scans could have found out for sure. My MO put me on the Zytiga so I figure he thinks it is. I hate the fatigue but am thinking I’m going for the 24 months of ADT. I’m wondering if they are worried the PC will get around it at the 24 month period on its own. They told me that was about how long it took for PC to get past the drugs when I first interviewed with them. So far psa still 0.0. It’s been a year and two months. Psa was 4.25 at its highest. I’m proof that 4 for a psa can be deadly. My guess is that at 3 the tumor was out of the capsule. At 4.25 it was against my rectum which is what I felt and had a colonoscopy looking for the pressure.

[billfenley2 in reply to Hidden]

Thanks a lot, Carlo. I'm not all that knowledgeable, but I've never heard that about Lupron, getting around the cancer in 2 yrs. My doc, who goes to Europe a lot on business, says their protocol is 3 yrs. Lulu above talks about somebody on it for 8 yrs, and Herb below talks about using it intermittently for 18 yrs! Anyway I'm sorry about your suspected tumor, though I'm surprised you'd have been able to feel it, at this point. Sounds like you'd be staged at T3, maybe, rather than T4. Best of luck to you going forward.

[Hidden in reply to billfenley2]

The two years is just a average for men with metastatic disease. All of it is just a guess because they can’t know in the early stages where it is. Someday the pet-scans will be the first test done to locate any disease so the guessing is at a minimum.

You think I’m stage 111 but what are you basing that on. You can only wait and see if it gets big enough to show up. I’m not impressed with what they do. Treat what they see after it’s too late. I had a 56 year old guy I work with ask me the other day,What’s a prostate?

[billfenley2 in reply to Hidden]

I think Stage 4 is more distant spreading. What's a prostate!

[Hidden in reply to Hidden]

😂😂

[Hidden in reply to Hidden]

Whoa! Painful😫

[Hidden in reply to Hidden]

Let em roll! 🎩

[Hawk56]

After what seemed a very successful surgery in March 14 T2CNoMx, GS8, margins, seminal vesicles and no ECE I had BCR at 18 months. SRT which I started in Mar 16 failed. In Jan 17 I went to Mayo and did the C11 Choline scan, four pelvic lymph nodes but no bone or organ.

Dr. Kwon and I agreed to 24 months of ADT, six cycles of taxotere and 25 more radiation treatments. That was based on the aggressive nature of my PCa, GS8, BCR at only 18 months, PSADT and PSAV...

My PSA dropped like a rock to undetectable and stayed there. I read various articles on time on Lupron and IADT.

I made the decision which my medical team agreed to stop Lupron at 18 months. I was not miserable but did have SEs, penile and testicular shrinkage, hot flashes and bone and joint stiffness.

Last 90 day Lupron shot was May 18. August labs were undetectable which was expected, October labs had PSA at <.1 and T at 135. I could tell!

February labs had T at 482, PSA .36...since then we’ve done more frequent labs.

.36 Feb

.24 Feb

.05 Apr

.12 Jun

.06 Aug

My urologist and I agree to do nothing given the sine curve nature of the labs.

We do have a plan should the labs show a continuous upward trend, image with Aximun between 1-2. Use that to decide on treatment. We agreed to re-initiate treatment at PSA no more than 4.

My decision to stop at 18 months was based on my response and the possibility of reducing the chances of becoming resistant.

My decision has worked for me and the QOL has been wonderful. I think an important factor is to have an active multi-faceted monitoring plan involving labs and imaging and decision points about restarting treatment.

Kevin

[billfenley2 in reply to Hawk56]

That's good pro-active work, planning. Good luck Hawk and thanks for the advice. And yes, I guess the possibility of affecting resistance to Lupron is something to consider.

[RonnyBaby]

Based on what you've stated, I'd continue the Lupron for another 6 months. I'd be rooting for a lower nadir, seeing as you aren't 'undetectable' yet. Maybe it won't go lower, but what if it could ?

[billfenley2 in reply to RonnyBaby]

That's what I'm thinking, Ronny. Thanks.

[herb1]

Bill: I've been on and off Lupron (plus Casodex and Avodart) for 18 yrs. Isn't using the calendar the wrong approach? Shouldn't you and your docs be using your psa and T values and patterns...and your side effects to make the decisions? I graph my psa's and usually stopped Lupron when the curve was not getting better or worse and ~0.1. I restarted when my psa reached a target (4.0) or the plot showed it was going up fast within the next month or so. Should testosterone have been used? Maybe, but I could never get my docs to use it.

[billfenley2 in reply to herb1]

That makes sense to me, Herb, and that's sort of why I'm inclined to extend my Lupron, but I'm glad to have the back-up. 18 years, wow, that's testimony in

itself.

[Hidden in reply to herb1]

Advice from experience..

[GeorgesCalvez]

Here is my PSA history;

8 September 2017 131 Dx

14 Septembre 2017 144,90

Prostatectomy without nerve sparing, 19 February 2018

26 March 2018 2,03 Five weeks after the operation

30 March 1st injection Firmagon

12 April 2018 0,27

15 May Start of 66 Gy radiation

25 June 2018 < 0,03 Cobas Roche electrochemiluminescence ECLIA sandwich (sérum plasma)

2 July End of radiation

26 September 2018 < 0,03 Cobas Roche electrochemiluminescence ECLIA sandwich (sérum plasma)

26 December 2018 < 0,05 Architect Abbott chemiluminescence CMIA ( sérum )

25 March 2019 < 0,05 Architect Abbott chemiluminescence CMIA ( sérum )

25 June 2019 < 0,05 Architect Abbott chemiluminescence CMIA ( sérum )

I had a Gleason 7 ( 4+3 ) with seminal vesicle invasion and positive margins with perineural invasion but without any signs of lymph node invasion.

My urologist is keen to continue for two or even three years but he is French and very conservative with a small c but I have lived a dangerous life so I will be hopping off the bus at 19 months.

For me, ADT has resulted in night sweats and leg pains, insulin resistance and high blood pressure and cholesterol which I am controlling for the moment with a cocktail of metformin, amlodipine and irbesartan and atorvastatin.

I hope that I will see an improvement in my quality of life without a return of a rising PSA that will signal that the cancer is on the move but who can say?

It is a difficult decision, we all want to be cured / go into remission for as long as possible but at the same time we want to maintain quality of life as much as possible.