My Journey so far...

[FSMBeerMan]

My diagnosis goes back to June 1st, 2009. I was 42. Biopsy showed all 12 sectors with 4=3=7 Gleason. July 23 had prostate removed. The pathology came back with Stage IV (pT4 N1 MX) PSA did drop to .2 after surgery though. Because of my younger age the treatment plan was Chemo 1st, then radiation and evaluate. No change in PSA after chemo, after radiation dropped to .1. PSA was unchanged for about 1.5 years then started rising at .1 increments every 3 months. When I hit .1 was put on Casodex which worked for about 2 months. The side effects were terrible for me, especially sore breasts. From there we decided on more watch the PSA every months and when there was a spike to go evaluation and new treatments. Fast forward to the present I am now 50 and PSA spikes have occurred and the only option at this point is ADT. I was told the ADT has to stop working before trying anything else. Luckily no bone metastasis is showing yet but there is concern for the lungs right now with abnormalities showing up. The first month showed a considerable drop in PSA so I am continuing with the treatment. The side effects are terrible to me though. Hot Flashes galore, no interest at all in sex, zero, none. Occasional fogginess and a definite loss in physical fitness and weight gain. I am quite healthy and ride my bike a minimum of 24 miles a day at 20+ mph average. I was given 3 options for help with the hot flashes, however I can't use them. 1 was an anti depressant which I tried in the past and did not take to well, the second was an appetite stimulant which is no good, I don't need to gain more weight and the 3rd was BP lowering medication. MY BP is already low due to my level of fitness and lowering it more is unsafe. So that is my story to this point. Any suggestions for successful management of the Hot flashes, loss of libido and fogginess are appreciated.

[pjoshea13]

Hi FSMBeerMan,

You might think about Gabapentin, based on this study:

ncbi.nlm.nih.gov/pmc/articl...

My wife was hospitalized for 4 days in 2015, due to shingles pain. The only thing that helped with her vagus nerve pain was Gabapentin. The shingles was brought on by a plasmacytoma, for which she was treated with Velcade. After the chemo, there was 6 months of intense neuropathy pain. She could only get through the day via 100 mg Gabapentin every hour. I mention the high dose since my wife tolerates almost no medication. She had no issues with Gabapentin.

...

Have you had your estradiol [E2] measured? It needs to be at least 12 pg/mL for bone health. ADT can drive E2 down too far. The remedy is a low-dose E2 patch (Vivelle-Dot Transdermal). Might that help with the hot flashes?:

ncbi.nlm.nih.gov/pubmed/106...

-Patrick

(Intrigued by your moniker - are you a Pastafarian?)

[FSMBeerMan in reply to pjoshea13]

Yes I am, Ramen!

[AlanMeyer]

About physical fitness:

I was not able to maintain the same level of fitness on Lupron that I had without it, BUT, I was able to maintain some fitness by working hard at it. It will be a challenge and you'll have to set your sights lower than they were, but I think you'll still be able to enjoy a fair number of miles per day on your bike, though you might have to drop down to 15 or even 10 miles per hour. You might even be able to go a few miles at 20 mph. If you can't, well, you can't. But whatever you can do will still be satisfying and still make you a lot healthier than you'd be if you cut out exercise. In fact, I think you'll still be in better shape than most people who don't have cancer or Lupron.

About sex:

I was only on Lupron for about five months at age 57 but, after the first 3-4 weeks, my libido, like yours, dropped to zero. I could look at a beautiful woman and see that she was beautiful, but have trouble remembering why that meant anything to me.

Sex seemed to be gone for me but I decided that it was just wrong for me to abandon my wife, whom I still loved. I decided that I would try "outercourse", oral and manual sex with her to try to bring her to an orgasm. After a while, she got more and more aroused. To my total surprise and amazement, I did too. The whole thing was an amazing success. From then on, I still had zero libido. I still had to force myself to have sex for her sake. But I did it and I got a tremendous kick out of it every time.

I'm not the only guy I know who has had this experience. I've seen postings from quite a few other men who have reported similar effects. So I say, force yourself. Do it for her. You'll be surprised at how much you enjoy her response and how much it stimulates your own.

Best of luck.

Alan

[Hidden in reply to AlanMeyer]

I like your attitude !

[FSMBeerMan in reply to AlanMeyer]

Thank you for the insight Alan. The sex thing is going to take some work on my part, I will heed your advice.

[Billash]

You might ask your oncologist about provigil. I have been on casodex and Eligard since last Oct, bad hot flashes (which I tolerate with fans) and debilitating fatigue. I am 77 and have been trying golf again, quit 25yrs ago. Very fatiguing just hitting balls. The provigil is amazing puts off the fatigue and allows activity. Removes the fogginess as it increases dopamine.

Best of luck

[FSMBeerMan in reply to Billash]

Thank you, I am going to ask my DR.