I hate Lupron

Thanks, TA.
I'd be interested to know what the longer term outcomes are...especially for couples where a stretch of ADT has been involved. Which side effects fully reversed/partially reversed/didn't reverse at all, and what the lasting relationship effects were. It's one thing to endure a tough year expecting a high likelihood of recovery...and yet another to really think this might be a new normal.

I wish I had a better understanding for what to expect when Lupron is finished...which side effects generally completely reverse, how quickly...which ones partially reverse, which ones never really return to normal. We aren't yet in full bloom with SE's, but there are enough that I'm already wondering if we've hit a point of no return.

Mtnwife-

please know you are not alone- your description is so true to my own experience of late.

tomorrow is May 5- I count that as my diagnosis day because it was my first appointment with my MO in 2016. On May 9, I got my first shot of Lupron. 1 year now. Things still worked at first for about 6 months, but I had to start increasing Viagra from a 25 mg dose. Eventually that failed. Injections- never really worked (and I tried diligently) and just unpleasant.

I think muscle deterioration in my shoulders is causing loss of some motions due to pain. Still, I walk four miles often and fast and feel real good about it. I might even try a fourteener this summer.

I have found it difficult to be the lecturer I know I was as this semester winds down. Not able to expound and expand with "stories" and connections that used to flow... I just can't find them. Still, I know I have good teaching moments with my students, and in the mornings I seem able to bring energy to intellectual tasks.

I have no hair on my chest anymore and look a bit Pillsbury doughboy with my shirt off, but I sport this new mass of thick wavy salt and pepper on my head, mostly a compensation for losses elsewhere, but also, whoever this new person is with a soul patch and a shock of white on the chin, I see a handsome devil in the mirror.

I have so many mystery and phantom pains- they usually show up strong at first, fade slowly gone by about 3-4 days; rarely anything that pushes me to an NSAID. Joints, skin surface, bone aches, toothaches, visceral aches.... always a reminder lest I forget.

I have been married forty years this June. My daughter marries this June.

Sometimes I feel like the whole world has changed around me, but mostly I know it to be the other way. It is very hard to mourn the loss of before, when intimacy made my heart sing, because it always draws me to this infinite well of sorrow, where I see in reflection my wife watching me fade even now, and then some day..... It is like I could fall into the well forever, so I try to stay clear.

Still, I cook dinner for my wife most nights, make music everyday, struggle to remember all the bills I have to pay, and try to plan to do some big things this summer while worrying about simplifying things going forward, all the time.

It is ironic that I almost always forget to include my Lupron when confirming a medication list for a new medical adventure (and my oh my, don't we get a lot of those...every weekday morning these days I lie on a slab for ~8 minutes, listening to a monotone that conjures images of burning rays of death slashing through my prostate... and I smile a bit).

I am still me...

Yeah I hate Lupron.... when I can remember to think about it.


Thanks WifeofPie for starting this thread, and thank you all for sharing.

rf

yah, but not this week anyway, I am pretty sure...

Yup, this is a good thread. I go back six and half years and wish I'd known what the outcome was going to be so we could have had some "honeymoon" sex before the stuff hit home. We were certainly not counseled very well on the expected side effects.
The oncologist has been so "hohum" about the SE's. When Gary mentioned the loss of energy, he basically said to "get over it", women live without T and get by just fine. Great.
Then there is the "before chemo questionnaire" that asks if the treatment has affected his sex life. Where is the Not Applicable choice?
Gary used to put next to the gender question: Sex ____ "yes".
When Gary was at his lowest weight and had to get the shot where there was no fat to inject in his belly, it hurt so much. If there is anything I want him to quit doing when all options have been exhausted, it is the lupron. I have suggested it more than once. He has been on it for so long that I can't see his T coming back anytime soon.
Thanks to wifeofpie for starting this thread. Sometimes the guys joke a little bit about it, but not too many actually write about what it does to them and their wives when they are stripped of their masculinity.

This is a great thread, one I am following with huge interest. I can relate to so many of these feelings that other wives have so eloquently expressed. Thank you for starting it and sharing your feelings. It's comforting to know we're not alone. Sue

a few more thoughts for the Lupron trip.....I was lucky as it didn`t effect me as far as fatigue, emotions ....25 lbs.added which I NEEDED...so a plus there. But the hot flashes did hit hard after 6 weeks and now at the 11 month mark are still around , but lessening for sure. I feel like I have experienced some brain fog over the last year though , and for towards the 6 month mark of the Lupron , many aches and joint pains....now lessening .......I self medicate ....live goes on .....~ David

starfinder, that's a great perspective. Any treatment for any physical ailment should be a net positive. So, sometimes even if the treatment sucks, it sucks a lot less than the actual ailment! Something to keep in mind.

Few would go on hormone therapy without good cause. Given the side effects though, it's also understandable that some people would prefer to let non-symptomatic (biochemical only) PCa carry on without intervention until symptoms become a problem. Before the PSA era, that was probably the only time people went on hormone therapy.

Thanks Starfinder. The thread has just been so depressing for me. I will be starting ADT by the end of the year and I will be on it for the rest of my life. I have no problem accepting the loss of libido - the surgery already took care of that. I'm concerned mainly about my ability to continue working. I had just so hoped to hear a few guys say it wasn't as bad as they thought it might be.

Redwing's point at treatment needing to be at a net positive (which we would hope lifesaving measures are a net positive) are I think part of where my conflicted feelings lie. My husband had no symptoms at all. He felt fine, all functions were working as always. He went from having no idea anything was wrong to a routine blood draw at a random physical leading to a diagnosis of high risk disease. Of course the good news with that is that we don't have evidence that it's advanced disease...just high risk disease with a high volume of cancer in the prostate bed...but it's been a sea change around here to go from asymptomatic to where we are now just based on test results only.

I feel terrible for feeling so crushed by all of this. I feel like this treatment is taking away some of my favorite parts of my marriage (and I don't just mean sex...I feel like even some honesty between us is gone because talking about openly it is so potentially hurtful to him). And I'm trying to have hope that we'll get those parts back (at some level, anyway), but that seems to be a crapshoot as well.

WifeofPie - I can totally relate to the shock of the diagnosis. Give it some time. Maybe your hubby won't have to have long-term treatment and this will just be a blip in the scheme of things. I'm looking back at a year of various treatments, doctors, scans and meds and it gives you a different perspective. Good luck to you both and don't hesitate to get some counseling or talk to your doctor about some medication if you need it. Give him some time too. Dan didn't do much talking about it for a while either. He'll come around. Just be there.
Mary

mattamx said...
... I'm concerned mainly about my ability to continue working. I had just so hoped to hear a few guys say it wasn't as bad as they thought it might be.

That will depend somewhat on what work you do. While the ADT did bother me quite a bit, I never stopped working. My job is in engineering management, running a Tier 1 automotive supplier's test labs for the Americas. Significantly demanding job mentally, and sometimes physically. Couple million dollar budget, a dozen or so employees, multiple lab sites, global company with global engineering teams. Several disparate product lines, supporting Ford, GM, and Chrysler vehicle program teams. So, yeah, fairly demanding.

All of that is only to say even with all of that, ADT never stopped me from working. I'm pretty confident you can do it. You just do it; lower the horns, charge on. It's harder, and takes some effort to find coping methods, but overall my work never suffered. At home though, by 8:30pm I was crashing hard every night (like, lights out). Not getting home until 6:30pm didn't leave a lot of personal time with my sweetie during the week!

The downsides we've been venting about on this thread are much more personal, much more intimate, and nothing anyone I work with needs to know about!

WifeofPie, when my husband had his RP, I was the same age you and my husband was the same age as your husband so I can certainly relate to your frustrations. (Crazy, huh?) One of the hard parts being so young is that you don't know anyone else going through this to talk to. There is only one other guy we know under 70 with prostate cancer. And most of the guys diagnosed are the “one and done” types who had initial treatment and never had a PSA recurrence of more than a few digits to the right side of the decimal point. So it’s tough to find someone who can relate at all.
We went to a therapist but I basically just sat there being sympathetic while my husband cried. It helped him, and he just started going to a support group that he liked so that’s good. My earlier comment was really the first time I ever said how awful your sex life could (will?) become based on the procedures, drugs, etc. I think my husband thought I was one of those wives who lost interest in sex… and I didn't have the heart to tell him otherwise!
And the Lupron brain? Ugh. (I say Lupron but my husband ended up getting an orchiectomy because the Lupron shot his sugar levels to the sky and his BP to 195/110. He’s also on casodex. ) I just found a bottle of soy sauce he put away in the garage…
The other part that's hard for me is what dyank and mrs. George alluded to. It's been six years and my husband’s health has significantly declined, but life goes on and everyone moves on with their own lives. Our social life is a skeleton of the past mainly because my husband is asleep by 8 or 8:30 and has little energy to go out. So people stop inviting. We also don’t entertain nearly as often as we did in the past and I’m not sure why. Probably what I refer to as The Dark Cloud of Cancer sucking the energy out of our house. I do the things we used to do together by myself or with other people (bike riding, hiking, travelling, climbing 14ers (for Rockypeak—You Go! I’ll be at 15,000’ next month on a hike on another continent), etc) because he can no longer do it. He sits on a bench if we are out and people watches while I go and do other things.
So our relationship has definitely changed. It’s different. There are positive things for sure, and it’s the new normal, but we would much prefer to rewind the clock to healthier days!
This article really sums up a lot of my thoughts from the caregiving side:
www.smh.com.au/national/health/so-what-if-my-results-say-im-doing-better-im-still-dying--just-not-right-now-20170323-gv4hfk.html

WifeofPie,

Thank you for this thread. First, I should point out that husband has almost exactly the same stats as yours. He is now 61 and was diagnosed two years ago in March 2015. It feels like a lifetime ago because we have been through so much. It was a real sucker punch at first. We had always defined ourselves and our relationship in many respects by our sex lives. We both had wonderful appetites for it. And still do, it's just different.

My husband was on Lupron for 16 months. His last shot, a 6-monther, ran out in February of this year. During the whole Lupron course we made a true effort to remain intimate. While he did not have physical desire his intellectual desire remained intact. It was enough to continue with weekly sessions and sometimes Viagra still worked (to some degree). Now that the Lupron is wearing off we have incorporated Trimix and it is working quite well ;;;;! Hurray! However, given the seriousness of my husband's diagnosis I'm worried that this is going to be a short reprieve. We test PSA again this month and we will see where we are.

I'm so thankful for this chance at "normal sex" again. But at the same time, I think both of us are cautiously optimistic. I think and hope we are going to be better equipped to handle the next phase when it comes. Considering how devastated we were at first, we've surprised ourselves at much more resilient we have become. We may be singing a different tune in a month or in a year, but for now we're having fun.