Nelson Vergel
Founder, ExcelMale.com
I wanted to share someone's story (I have a HIV forum also called [email protected]). He has had no testosterone (Lupron blocks it) for almost 5 years. I do not have his pics but the ones he showed me show he has been able to retain his muscle. A true fighter!
"Hi all,
I’ve told this story before. But I haven’t updated it for a while. So I will give you a brief background, and let you know how I’m doing right now. I am a GWM who has been HIV poz for 33 years. Almost 5 years ago I was diagnosed with advanced prostate cancer (metastasized to the bones, such as shoulders, spine, rib cage). My PSA had gone from 3 to 43 in a year and a half, and I had been ignoring signs like: difficulty ejaculating, pain in my shoulders in the morning, and once, when at work, a dull throbbing pain in my right rib cage.
The literature I read stated an avg. survival rate of 2-3 years for advanced prostate cancer. Grim! Reminded me of when I was first poz, and AZT was the ONLY drug available. For my cancer, I started on the injectable Lupron, and when my PSA started to double, a year and a half into it, I was put on Xtandi. This drug has proven to be a lifesaver (literally!) for me.
It won’t work forever, and I am probably nearing the end of its effectiveness for me, but I am still on just the Lupron and the Xtandi. My oncologist, at Princess Margaret Hospital here in Toronto says that by now, for most guys, she would have had to have thrown more at the cancer (e.g., chemo). So, she is impressed with how things have gone, and is happy to monitor things as they are. She doesn’t want to use chemo until we need it. I only have 3 options left: chemo, a drug called Radium 223 and whichever trial drug is available at the time I will reach “no other options”.
Interestingly, when as analysis was done of Xtandi, by the lead pharmacist at Toronto General, she concluded that it was not a drug that should be used, given the HIV drug combo I am on. (BTW, due to all the resistance, my combo is the ONLY combo that will work for me.) I insisted that I wanted to take advantage of this drug, and she and my specialist found a way to modify my combo so that I was able to take Xtandi. (E.g. My ritonavir dosage was doubled.) I accepted that a write up be done about our experience, and it is now published: AIDS 2018 Vol 32 No. 17 pp2640, 2641) The concluding statement is:
The use of therapeutic drug monitoring to manage drug interactions has been well documented in patients receiving antituberculosis or transplant medications with ART. We report successful long-term treatment of advanced prostate cancer with enzalutamide (Xtandi) in a treatment-experienced PLWH using modified ART dosing supported by therapeutic drug monitoring. This strategy may be helpful in other situations where significant drug interactions involving unstudied combinations are a concern.
I know I will be among the 10-15 per cent of men who survive until the 5 year mark. Only 4 per cent make it to the 10 year mark. But, a lot of money is being devoted to treating prostate cancer, so who knows?
We will all die some day, and the spirit world is a beautiful place - we have been told by those who have crossed over, then been sent back. (I’m serious. Check testimonies on Dr. OZ, as an example.) BUT that said, I’m really enjoying life at the moment, here in the physical world.
I am a foodie and love trying new recipes with my Instant Pot (a Canadian invention, BTW haha). I do 3 workouts at the gym every week (weights followed by 16 minutes of high impact interval training at the end of each workout. 180 calories/3300 metres in 16 minutes.) I recently showed a trainer at my gym, who competes in physique competitions, photos of me when I competed at the ages of 36 an 37. He said: You look like that now. He’s seen me in the change room as well as on the workout floor, so he is in a position to compare. Haha.) My weight is the exact same weight (154) I was when I competed.
While I can’t gain weight/muscle (I have had NO testosterone for almost 5 years due to the cancer hormone therapy), I have maintained my muscle, which is something. Also, have not gotten fat, which is part of the metabolic syndrome associated with hormone therapy. But I have become diabetic, due to the hormone therapy and consquent lack of testosterone. I’m on metformin for that, and it is controlling my blood sugar very well.
Most of the time, I feel pretty good (in spite of the fact that the major side effect of Xtandi is extreme tiredness.). And my latest blood work has me at an impressive 540 CD4 count, 22%. It has been 10 years since I’ve seen numbers anything close to that. I’m enjoying the small things in life. I have a hobby (song writing and learning to play the keyboard), and have a fit, healthy 84-year-old mom to keep an eye on. So, although now retired, at the age of 59, I’m rarely “bored”.
I’ve told this story before. But I haven’t updated it for a while. So I will give you a brief background, and let you know how I’m doing right now. I am a GWM who has been HIV poz for 33 years. Almost 5 years ago I was diagnosed with advanced prostate cancer (metastasized to the bones, such as shoulders, spine, rib cage). My PSA had gone from 3 to 43 in a year and a half, and I had been ignoring signs like: difficulty ejaculating, pain in my shoulders in the morning, and once, when at work, a dull throbbing pain in my right rib cage.
The literature I read stated an avg. survival rate of 2-3 years for advanced prostate cancer. Grim! Reminded me of when I was first poz, and AZT was the ONLY drug available. For my cancer, I started on the injectable Lupron, and when my PSA started to double, a year and a half into it, I was put on Xtandi. This drug has proven to be a lifesaver (literally!) for me.
It won’t work forever, and I am probably nearing the end of its effectiveness for me, but I am still on just the Lupron and the Xtandi. My oncologist, at Princess Margaret Hospital here in Toronto says that by now, for most guys, she would have had to have thrown more at the cancer (e.g., chemo). So, she is impressed with how things have gone, and is happy to monitor things as they are. She doesn’t want to use chemo until we need it. I only have 3 options left: chemo, a drug called Radium 223 and whichever trial drug is available at the time I will reach “no other options”.
Interestingly, when as analysis was done of Xtandi, by the lead pharmacist at Toronto General, she concluded that it was not a drug that should be used, given the HIV drug combo I am on. (BTW, due to all the resistance, my combo is the ONLY combo that will work for me.) I insisted that I wanted to take advantage of this drug, and she and my specialist found a way to modify my combo so that I was able to take Xtandi. (E.g. My ritonavir dosage was doubled.) I accepted that a write up be done about our experience, and it is now published: AIDS 2018 Vol 32 No. 17 pp2640, 2641) The concluding statement is:
The use of therapeutic drug monitoring to manage drug interactions has been well documented in patients receiving antituberculosis or transplant medications with ART. We report successful long-term treatment of advanced prostate cancer with enzalutamide (Xtandi) in a treatment-experienced PLWH using modified ART dosing supported by therapeutic drug monitoring. This strategy may be helpful in other situations where significant drug interactions involving unstudied combinations are a concern.
I know I will be among the 10-15 per cent of men who survive until the 5 year mark. Only 4 per cent make it to the 10 year mark. But, a lot of money is being devoted to treating prostate cancer, so who knows?
We will all die some day, and the spirit world is a beautiful place - we have been told by those who have crossed over, then been sent back. (I’m serious. Check testimonies on Dr. OZ, as an example.) BUT that said, I’m really enjoying life at the moment, here in the physical world.
I am a foodie and love trying new recipes with my Instant Pot (a Canadian invention, BTW haha). I do 3 workouts at the gym every week (weights followed by 16 minutes of high impact interval training at the end of each workout. 180 calories/3300 metres in 16 minutes.) I recently showed a trainer at my gym, who competes in physique competitions, photos of me when I competed at the ages of 36 an 37. He said: You look like that now. He’s seen me in the change room as well as on the workout floor, so he is in a position to compare. Haha.) My weight is the exact same weight (154) I was when I competed.
While I can’t gain weight/muscle (I have had NO testosterone for almost 5 years due to the cancer hormone therapy), I have maintained my muscle, which is something. Also, have not gotten fat, which is part of the metabolic syndrome associated with hormone therapy. But I have become diabetic, due to the hormone therapy and consquent lack of testosterone. I’m on metformin for that, and it is controlling my blood sugar very well.
Most of the time, I feel pretty good (in spite of the fact that the major side effect of Xtandi is extreme tiredness.). And my latest blood work has me at an impressive 540 CD4 count, 22%. It has been 10 years since I’ve seen numbers anything close to that. I’m enjoying the small things in life. I have a hobby (song writing and learning to play the keyboard), and have a fit, healthy 84-year-old mom to keep an eye on. So, although now retired, at the age of 59, I’m rarely “bored”.
It has snowed overnight here in Toronto. Haven’t had much snow so far this winter, so I’m looking forward to getting out in it soon, while it is still white. Love it, really I do. haha Cheers! Brian"
