Ready to throw in the towel

Posted by scottbeammeup @scottbeammeup, Jul 19 6:50am

I'm 60 and was diagnosed as Gleason 7, T2B. Was given Lupron, 5 sessions of SBRT and they want me to continue Lupron for a year. I just got my second six month shot.

I honestly don't think I can make it. I worked REALLY hard to stay in shape but now my arms and legs are like toothpicks and my stomach is huge. I've forced myself on a 500 calorie a day diet (two protein shakes and a multivitamin) for the past month and it's STILL not getting rid of my belly. I stopped going to the gym because, frankly, I'm embarrassed to be seen there among my old gym buddies.

I had a fantastic sex life with a good number of f***buddies but now it takes so long to get an erection by myself that it's not even worth it.

Worse, though, is that I am SO sad with a grief I have never felt in my life before--not even when my parents died. I feel like I am underwater looking up at a hazy world. I cry or feel sad at least 4-5 hours a day.

I sleep, at most, four hours a night even though I take a double dose of Xanax (2 mg total) and two Benadryls. The drugs knock me out but I wake up at 2 or 3 AM and can't go back to sleep.

Today, I casually told a nurse I can't wait for the next six months to be over because that's the end of Lupron and she said it's going to be more like 18 months to get back to normal because Lupron takes a very long time to leave the body. Hearing that made me want to hurl myself off the roof of the medical building--I just literally froze with fear.

I'm technically "alive" but there is no quality to anything. My day consists of faking my way through work, then coming home and crying on the couch and staring into space. Sometimes my heart will start racing at 150-180 bpm for a few minutes and I pray I will just have a heart attack and die.

My friends and family have given up on me, and I honestly don't blame them. I also got tired of their "you need to be positive," "you need to have a positive outlook" bull****.

I guess what I'm asking is how the hell do so many other guys do this and still have any kind of a life. I feel like I'm 100% destroyed inside.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@northoftheborder

There's also a loss of identity. You probably thought of yourself as the fit guy at the gym with an active love life, and that's been taken away from you. I was a private pilot and small-plane owner for 19 years. and while I still have my license, I can't use it without a current medical (they told me they're never likely to approve one again).

These are real losses, and it takes time to grieve for them — for months. I cried every time something reminded me of the plane. But (to use a flying metaphor) you can eventually break out above the clouds into the sunshine.

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I know in my head that you're right but don't feel that way in my heart yet, though I do know from life experience that eventually you can get used to just about anything so we'll see. Just out of curiosity, why can't you fly a small plane, even solo, if you have prostate cancer?

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@scottbeammeup

I know in my head that you're right but don't feel that way in my heart yet, though I do know from life experience that eventually you can get used to just about anything so we'll see. Just out of curiosity, why can't you fly a small plane, even solo, if you have prostate cancer?

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In the U.S., I could fly a tiny ultralight solo, because you don't need a license for that, but I still couldn't fly a cross-country plane Cessna or Piper — it would be like being able to drive an ATV but not a car (so not all that useful). In Canada, you need a medical even for an ultralight. The general rule of thumb for any serious cancer in either country is 5 years cancer free and not on active treatment for an aviation medical, which isn't ever likely with stage 4.

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@scottbeammeup

Thanks, I think I do need some mental health help and will try to find it. My concern about taking a depression med is that I've heard they make sexual side effects even worse and I'm at least hoping *something* will come back in that area in the future.

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@scottbeammeup
It is why you need to discuss with medical professionals not only physical but psychological issues you have. It is extremely important to be truthful. They have heard it all. They can advise you on medical and pscycological facts and and research for any concerns and you not having guess what is right or wrong information.

My anxiety and depression medication has no side affects on ED. It does change some heart electrical signals and my psychiatrict specialist worked with my Heart Failure and EP.. They all agreed the anxiety/depression medicaion would be a greater benefit to me than the low risk of side affects.

There are many ED medicinces out there that can help. Months ago on MCC I asked about dry orgasms after proton radiation. I was embarrassed about this and sure helped to read that it is a common side affect after radiation treatments and what others expressed on the long term affects. I used this MCC information to asked my doctors who all concurred what I was being told. MCC is such a great source of others experiences and knowledge.

Please do seek assistance. There should be NO shame in seeking mental health assistance. Doing so shows you are taking care of your mental health as well as physical health. There is NO shame in not seeking assistance. The shame is not doing it.

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@northoftheborder

In the U.S., I could fly a tiny ultralight solo, because you don't need a license for that, but I still couldn't fly a cross-country plane Cessna or Piper — it would be like being able to drive an ATV but not a car (so not all that useful). In Canada, you need a medical even for an ultralight. The general rule of thumb for any serious cancer in either country is 5 years cancer free and not on active treatment for an aviation medical, which isn't ever likely with stage 4.

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Sorry to hear that. It sounds unnecessarily strict especially if you're not in a big city and just in the more open parts of Canada.

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@samadhi

Did you ask the doctor if Anti Androgen is required? You G7 T2B seems low grade.

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He said it was standard of care and I'm being treated at an NCI facility so I assume they know what they're doing. Besides, just got the second 3 month shot so there's nothing I can do about it anyway.

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I would suggest addressing the emotional issues with a counselor.
Perhaps begin with the medical professional prescribing your Xanax.
The medical treatment piece seems to be in place for the next 6 mos with the recent Lupron injection.
Address the emotional aspect now, as that sounds like the most immediate issue.
There are information strings on this site about men dealing with ADT/Lupron side effects which may be helpful.
And other resources, such as the Prostate Cancer Foundation, that address nutrition, physical and emotional aspects of PCa and treatment.
Best wishes.

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@scottbeammeup

He said it was standard of care and I'm being treated at an NCI facility so I assume they know what they're doing. Besides, just got the second 3 month shot so there's nothing I can do about it anyway.

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Wonder if Decipher Molecular assay may help determine role for Androgen Deprivation therapy. Best wishes..

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I went through the same thing with my Eligard injections.

When you say that you “worked REALLY hard to stay in shape…” what does that mean? Were those significant resistance-training (weightlifting) multi-joint exercises that utilize the body’s largest muscle groups (mainly squat, deadlift, bench press, row, overhead press, and lat pulldown)? Or were they just regular, easy, low-level exercises that people generally do?

Also, there is no need to go to a 500 calorie diet. Besides being very unhealthy, it’s unnecessary. It’s almost always about calories in vs calories out. In my case, in addition to weightlifting, I had to add alternating days of running 5Ks with swimming 35-45 minutes of laps every week.

Did you hire a physical trainer specializing in resistance-training prostate cancer/hormone therapy patients?

We often hear about the physical benefits of exercise to minimize the side-effects of hormone therapy (https://m.youtube.com/watch?v=YE61HSAsFb0). But, there are also mental health benefits as well: https://m.youtube.com/watch?v=8n0cIhamFvo

Many cancer treatment centers have counselors to help patients and family members in dealing with the emotional and mental aspects of prostate cancer and hormone therapy. You should consider reaching out to them.

Having heard in a PCRI Conference presentation that resistance-training helps to minimize many of the possible side effects of hormone therapy, I ramped up my strength-training program prior to my first injection.

As a result, my side-effects from Eligard were minimal - just minor “warm” flashes and muscle atrophy (resulting in about a 30% loss of strength). I did have a loss of libido, but no ED. No mood swings, emotions, fatigue, forgetfulness, confusion, memory loss, insomnia, night sweats, weight gain, etc., things (“male menopausal”) that are typically mentioned.

(By not starting a robust weightlifting program prior to starting on Lupron, you put yourself way behind and will have much to make up. It will not be easy.)

As for the loss of libido (with my testosterone level dropping to 3.0 ng/dL), everything still worked. (I was not going to take this lying down, if you’ll pardon the pun.) So, that loss of libido did not prevent me from maintaining the physical relationship with my wife. There was no desire, but I went through the motions anyway. Sometimes you simply do what you have to do. Life is that way sometimes…… The relationship survived without issues. I simply had to lift some weights and push through it.

Now with 20/20 hindsight, my Eligard experience was just a mild annoyance. Just as was presented in the PCRI Conference presentation, very intense resistance-training was the key.

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@scottbeammeup

Sorry to hear that. It sounds unnecessarily strict especially if you're not in a big city and just in the more open parts of Canada.

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I'm considering fighting it. I talked to a good aviation lawyer recommended by COPA, who said I'd have a chance (maybe 50:50) of winning some concessions from Transport Canada.

The cost estimate isn't outrageous (about the same as owning and operating a small plane or a pickup/SUV for a year), but I have to decide if that's where I want to invest my precious time and energy.

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Also, would you consider trying a gratitude journal? Every day you write down little things that bring you joy (e.g. a nice piece of toast, hearing your favourite song, a call from a friend). I did a version of that when I was paralysed in a hospital bed for a few months, and it helped "rewire" my brain.

You might also enjoy this thread:
https://connect.mayoclinic.org/discussion/what-brought-you-joy-today/

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