I began EBRT treatments (72 Gy in 40 fractions) combined with 6 months of ADT (Lupron every 3 months and Bicaludamide) last March. I'm tolerating the radiation well, with only minor urinary and bowel issues, but the ADT is throwing me for a loop. I'm trying to maintain some level of sexual function with the help of PDE-5 inhibitors and bimix injections (10 ml), but maintaining any kind of ongoing relationship on ADT seems impossible. To complicate matters, my wife died last Oct after her own long, drawn out miserable battle with cancer. So I find myself alone and depressed, with severe mood swings, crying jags and 10 to 12 hot flashes a day. If the EBRT doesn't work, and I have to go on ADT permanently or even just intermittently, until I become castrate resistant, I really don't know what I'm going to do. If I didn't have two high school aged kids and no other immediate family, I think I'd gladly check out. But under the circumstances that isn't even an option. I already exercise, eat well and maintain my weight. Any suggestions?
Suggestions on Tolerating ADT? - Prostate Cancer N...
Suggestions on Tolerating ADT?
I used to take soy supplements for hot flashes. But since then some studies show soy is bad for Pca. Taking soy never hurt me, I have survived for 27 years. Go figure.
I am so sorry for your situation, particularly the loss of your wife. ADT is indeed a difficult treatment. I've been on it for six months and it's no fun. Please keep exercising and eating right, and do the things that give you pleasure. But also, I wonder if you could enlist a friend to help you get through this -- to be a sounding board, even to accompany you to some doctor appointments. Going through this alone is very difficult, even if your kids are supportive. You need a copilot. Is there anyone in your world who could do this?
Good suggestion. My friends and extended family continue to inquire about my welfare and offer support, but I just hate to burden them with the details of my treatments and my dark mood. I keep hoping that things will improve at some point. I'll make more of an effort to reach out to them.
You've been through a lot - it has been described as similar to PTSD, and grieving takes its own time. Some men find it helps to join a support group for men with prostate cancer (I belong to two, myself), or to get private sessions with a psychotherapist (I did that too). The antidepressant Effexor (venlafaxine) may do double duty for you. It has been used by many to get relief from hot flashes, and it may help with your mood. Deal with what's on your plate at the present moment - it's 6 months of ADT - that's all you know for sure right now There will be time to build new relationships afterwards. The future is unknown and uncontrollable.
Tall: I've thought about psychotherapy, myself, but need someone who is specifically focused on the needs of cancer patients. Any advice about how to find someone with that bent?
Thank you for the kind words and suggestions. I will inquire about Effexor. An anti-depressant might help, and I would welcome relief from the hot flashes. I am not sure about the psychotherapist, but I think I would benefit from talking with a behavioral psychologist, one who specializes in cancer patients. I'll try to focus on the next three months of ADT, and not obsess about what's coming after that. The good news is the radiation has been much better than I anticipated, and is almost over.
I think that jazzy53 and Tall_Allen have made some excellent suggestions. Here are a couple more for finding in-person support groups:
malecare.org/support-groups...
If you find a support group that you can meet with, ask other members if they know a particularly good psychologist, social worker, or counselor who understands and helps cancer patients. You may establish a friendship with one or more of the members themselves that will be helpful to both of you. You can also try posting your location here to see if anyone knows someone in your area.
Most hospitals have clinical social workers on staff who are experienced in helping cancer patients. You can try calling around to see who might be available. I have a lot of experience with social workers (my wife is one.) In my experience, some are not particularly good. Some are good, but only with some kinds of people or problems that might not include yours. Some are just terrific. If you don't feel a connection with the first one you see, try calling some others before you give up.
Please don't despair. Keep looking for ways to reconnect with the things in life that have interested you - your children, relatives and old friends; the books, music, movies, or other things that interested you; community organizations and social media; whatever it is that you've enjoyed in the past. You've had some terrible losses and it is in the nature of all of us human beings to become depressed and to despair in your circumstances. It is only natural for you to feel that you have nothing to live for, but remember that you also have nothing to die for. We each get only one life and you still have a chance to add more meaning and more value with and to that part of yours that still remains. Try for it. You really have nothing to lose.
We're all behind you.
Alan
Thank you for you reply and heart felt suggestions. You are a kind and generous soul. I am being treated at Memorial Sloan Kettering in West Harrison, NY. I meet with my medical oncologist and clinical nurse tomorrow for a second shot of Lupron. While I'm there, I'll be sure to inquire about a psychologist or social worker on staff that I can talk to, or a support group that I can attend. This website and this forum have turned out to be a good first step.
I do get a great deal of joy and satisfaction from my kids. They're definitely what keep me going. Through all of this (losing their mother and having a father who is ill), they continue to soldier on. They maintain wonderful friendships, are active in their school and community, and do well academically and athletically. They never seem fall into despair or depression, or turn to bad influences. I don't feel as though I can rely on them for support; they have their own lives. But I should hold them up as examples and take their lead.
Thank you again.
It's good that you can enjoy your kids on the wake of your wife's passing. They must mean so much to you.
Fortunately you only have six months of ADT! I'm slogging through 18 months (in month 12).
Use it or Lose it. This is key. You need to use all means necessary to cope with the treatment-induced ED. And the mechanism for coping is: keep the erections going! Every day if possible.
In Sept the Giddy is debuting: a small sevice that treats ED by use of a simple principle: pressure yes, constriction no. Don't inhibit blood flow, like a constriction ring does, to keep blood in tbe penis for intercourse.
In the meantime, I invented a device called The Loop, which works on the same principle but is something anyone can make themselves in 5 seconds.
Go to my post, in the big group, "Here is the file -- Loop Instructions", and find the link to the instruction document. Just try adding the Loop to your ED Toolkit! Best of luck.
I've already read your post about the Loop, and have given it some thought. But my issue isn't complete ED; it's more of a lack of interest. As I said before, with the use of PDE-5 inhibitors and bimix injections, I can maintain some level of sexual function. Rather, my issue seems to psychological and hormonal.
First, it doesn't help that I'm a sweaty mess in bed due to hot flashes. But also, I just don't seem to have the same animal magnetism. While I still crave the intimacy, sex has lost a great deal of the passion and pleasure for me. Sex has become mechanical for me, and it apparently is very evident to my partners, and is not a turn on for them. Not only is testosterone a critical component for me in bed, it also seems to be a critical component for my partners in bed.
You know the old cliché where the woman complains, "Oh, all he wants to do is jump on me. I need kissing and cuddling."? Well on ADT, I seem to have achieved a complete role reversal. While I would be content kissing and cuddling, it's my partners who want to get jumped. It's depressingly ironic.
I guess the bottom line is, you can't fake passion.
None of this would be an issue, if I were still with my wife of 23 years. I'm sure my wife and I would have found a way to cope. But trying to establish any kind of a new relationship on ADT seems to be extremely difficult. As a result, I find myself alone and depressed a great deal of the time.
Murph,
I am so sorry for your loss - all of them. I cannot imagine what it's like to be you right now. And, am glad that you've got your kids there as a support. So important.
Although I had read about ADT (get a copy of "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones," I had no idea of the impact it would have upon me. I was given an injection of Firmagon - one month, followed by 3 injections of Eligard/Lupron - 3 mos each. Treated with EBRT and bracyboost concurrently. The treatments themselves were a piece of cake compared to ADT. The depression, sadness, grief, unexpected crying jags, thoughts of suicide - I just had to keep telling myself "it's the drug, it's the drug." For me, the grief - the sense of loss of who I was as a gay man - was awful. Combined with the other side effects of Lupron - wt gain, higher BP, bone density issues, shrinking testicles...the list goes on- ugh. Oh, and the lack of sex drive - as in ZERO - makes it very difficult to pursue any intimacy or sex at all - even masturbation is a chore and a drag. But, as others have said, try to keep it in use (ask your uro for script for tadalafil or other ED med) So, I guess I'm just trying to say, I know what the meds can do to you. And, I feel your pain. It ain't fun.
The only thing that has helped me is exercise. I force myself to go to the gym and use machines and to get some cardio exercise on the elliptical and treadmill (I have to be careful with these because of the Lupron induced osteopenia. Great, huh?) And, I can tell you that the effects will get less (perhaps we just get use to them?) over time.
And, as others have suggested, support groups and/or counseling provide can be great sources of comfort; a chance to express your rage and grief. It WILL pass.
Oh, btw, Malecare has advertised a study out of U of MN re rehab of sexual and urinary functioning. I joined. It's worth a "look see."
So, keep on chatting - that, too, helps.
Good luck to you.
EdinBaltimore
Yes, sex has become a chore and a drag. The sexual health team at MSK tells me I need to have sex in one form or another three times a week to preserve healthy tissue. Three times a week??? I'm lucky if I force myself once a week. And even then it is joyless.
And as I said before, sex with actual living, breathing women is a disaster. It only takes one time, and they're running for the exit. And who can blame them?
I am happy to hear that the side effects might either become less over time or else we become use to them. I'm certainly not there yet, but it gives me hope. Thank you for your reply.
I hear you on zero libido! It's the strangest thing to lose that drive that's always been there, fueling the desire for, and ability to have, sex.
I often have to force myself to think sexy thoughts. But the Loop works for me (also taking daily 5mg of Tadalafil)
without much if any help sometimes from libido. If you can have some kind of neutral-to-positive attitude that helps. But it appears that the Loop works essentially without libido driving you forward, because the real "game" is about creating or enhancing blood flow.
Once a week erection isn't enough penile exercise. Use it or else! Even if you tried the Loop before, try it again. I love Method #2 (cinched up) where it creates pressure around the package and perineum. Best of luck to you!
Now you have two FDA-approved ED devices: Giddy and Xialla. They are probably superior to my homemade invention. I hope they help you. Hang in there!
I am a survivor of 16 months of ADT (and max EBRT).
It drove me nutz - I desperately wanted 'off'.
What I never was able to do was control the hot flashes.
I would suggest trying to find something that helps to reduce and / or block them.
I suspect that the solution might lie in drugs / patches that deal with menopause.
Hopefully, you'll find an answer to that problem.
Next, IF possible, you'll reach a low nadir (PSA count) for at least 3 cycles, that would allow for intermittent ADT treatment. Intermittent treatment is becoming more common, for all kinds of reasons. After 6 months of withdrawal, I'm starting to warm up (emotionally and physically) and see light at the end of the tunnel.
In terms of ED / libido, Mine was quashed completely. I'm still trying to recover sensations and erections. I have a plan to deal with it - I have seen some improvements while consulting with a specialist.
The mental fog also caught me by surprise. I found that I needed to get more organized and consciously focus on things I was doing to try to keep my frustrations and emotions from taking over.
The diet / exercise thing is really important - that improves moral and keeps the body mass and weight gain issues under some semblance of control.
I've heard from some patients that the side effect diminish over time. Hopefully, that will apply to you.
In the meantime, recognize the triggers that make things worse -it could be that cup of coffee or tea - perhaps that time spent in the hot sun - maybe that spicy taco - who knows, but there are things to avoid and prepare for.
Wear layers of clothing that can be removed quickly, to deal with the extremes.
I also needed towels in my bed to soak up the night-sweats.
Try to find other posts that document how others coped with ADT.
At the end of the day, IF ADT is working on the disease, you'll need to tolerate it - at least for a period of time. It is the lesser of the evils to manage.
Acceptance of that fact will reduce the stress.
We wish you well ....
Thank you for your post. You make many good suggestions. I spoke to my clinical nurse yesterday about seeing a psychiatrist for some kind of anti-depressants. She mentioned Effexor also. And said that it might help with hot flashes. I've never been a big proponent of anti-depressants, but under the circumstances, I'm going to give it a try.
I will look for the things to avoid. I've already given up caffeine, sugar, alcohol, red meat, spicy foods, and reduced my fat intake.
Yes, the mental fog is another huge issue. My attention span and concentration have been reduced to seconds. It makes it very difficult to work productively.
I am glad to hear you are on an ADT holiday, and are warming up. Enjoy!
I'm counting the days until this six months cycle is over. I know I can make it through three more months of this. The good news is that my PSA has fallen to undeductible levels, and I pray that it stays there after the EBRT and ADT treatments are over. I really don't know how I'm going to deal with more ADT, if it comes to that. I admire your courage and resolve, and everyone else's on this site.
Oh...and, yes, to the mental fog and short term memory issues with ADT. I laugh at myself often - forget that I started x, turned to do y, and then, walk back in the room and find x unfinished. Use to annoy me no end. Now? I just laugh, finish x and forget about y. LOL
Seriously, this shit is awful for many of us. I've read posts from men who have been "on" ADT for 10+ yrs. I'm sure one adjusts, but just shoot me in the head.
And, I guess one of the frustrating things about it is that it really doesn't "kill" the cancer; it starves it of its "food supply," testosterone. Not sure I understand all of that but so be it.
Anyhoo, Murph, it sounds like you are coping well and taking control of the hand that you've been dealt - that alone - feeling more in control, is vital, I think.
Will be thinking about you.
EdinBaltimore
If you are having radiation you should suppliment with some form of iodine - organic sea kelp (not too much just a spinkle) is a good choice this will keep your body topped up,with good iodine, the body can't tell the difference between good and bad iodine so if you are deficient in iodine your body will lap up the radioactive iodine when exposed,to it . But if you have optimum iodine your body will reject the radioactive iodine because it is replete.
I was very sad to read about your wife dying and I send you a big hug for sticking around for your children you are such a hero God Bless you x
Murf: One good thing, relatively speaking, is that you are on ADT for "only" six months. It may seem like an eternity, but the time will slip by and then you'll be off the hormonal therapy. Once you're off, the side effects should subside and go away. I've been on it six months but have another year and a half to look forward to due to my high Gleason score. Some side effects started right away (hot flashes) but others are just creeping up on me now (swollen extremities and some others), so maybe you'll be done in time to avoid some of the worst effects. In any event, try to hang in there and do things you enjoy. Soon, the ADT will be a thing of the past.
Jazzy...yes, I am acutely aware of the fact that I've only been on ADT for three months, with three months to go, while many or most of the members of this site have been on ADT for much, much longer. I deeply sympathize and empathize with you and everyone else on this site.
And I think that's what has me so depressed and flipped out. I am in dread that my treatments will fail. The doctors at MSK cannot find the source of my rising PSA. The hope is that my cancer is still at the cellular level and is still regionalized, confined to the prostate bed, and will be knocked out with salvage radiation and ADT.
But when I had my RP, the tumor had become extracapsular. The surgical margins were negative, and my surgeon took dozens of tissue samples from the area and removed many pelvic lymph nodes, all of which tested negative, making my cancer T3bNo. Because my pathology report was good and no cancer was found in the region, the concern is that the cancer is not regionalized, but has become systemic, and will eventually metastasize in distant locations. The other concern is the immediate biochemical recurrence after surgery, and the aggressiveness of my cancer which had a two month PSA doubling time, before I began ADT.
I have run all my statistics through the Stevenson nomogram, which predicts the success rates of salvage radiation with ADT. The results show a 59% chance of no disease progression after 6 years, which gives me hope. But so far, my cancer has been defying the odds, and not in a good way.
Anyway, to make a long story short, my fear is that my current treatments will fail, my PSA will return, I'll go on ADT permanently until I become castration resistant, at which point my disease will metastasize to my bone, lungs and/or liver, I'll go on chemo and more radiation, but will eventually succumb to a slow painful solitary death. And as I stated in my original question, if that is the direction that my treatments are going to take, I wouldn't mind checking out sooner rather than later. Except there is the issue of my children...
Bicarbonate of soda - a teaspoon every day in water is supposed to help stop any spread of cancer
I hear you, Murph, and share many of your fears and concerns. And I hope I didn't come off in my earlier remark as minimizing your 6-month course of ADT just because I face 24 months. Far from it. I was just trying to give you hope that when your six months are up, many of the side effects will diminish and fall away. Each of us, however, has a different scenario -- different Gleason scores, PSAs, side effects, family situation, etc. -- so we all face our separate struggles. I hope you can find a way to cope, and if you find any secrets to that, please let me know. I could use some help myself. The only advice I can offer is to find some enjoyment every day -- no matter how small -- and try like hell not to look too far ahead.
My reaction to ADT was identical to yours, right down to suicidality, held in check only be the existence of loves ones; without them, there is no way I wouldn't have blown my brains out. When I was finally able to get on antidepressants, I found they worked very well, much to my surprise. Be sure to get a DNA test prior to starting, as only a small percentage of these drugs match your genetic make-up.
Murph , has m do sorry about your wife. That’s f n horrible . I was in your shoes , and in even worse shape physically 41/2 yrs ago. By I had my strong wife to pull me thru .. I went crazy with double adt and tubes out of my back . Spouted suicide even pointed and cocked my 39 at my head . Guys that float easily down this river are either very lucky or just stoic . Hang in there .. in time you can adjust .. it ain’t no pleasure cruise. The kids need you and yours need you to hurdle the adt bull shit . If we weren’t in pandemic I’d come take you out for a spin .. At some point hints should get better . This is a true test for fellows running on an empty tank with no t .ots kind of like putting water in our gas tank . Just make thru this worlds bs and these next few months. For me at 53 I was I was a fall from grace I want prepared for in any way . No on is prepared for this . It’s Abby normal its a weird existsnce at leas . Like getting hit by a two hour across the scull . Keep rollin Murphy . I want you herein September singing a different song. You done what’s necessary to survive . No recovery heal . It take time . Be well friend. The world needs you here . Kids need you too . Be well Papa . Hang tuff , this adt life is not fun or a joke . You can do it . If I can
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