Brian Nevin
Member
Hi all,
I am a GWM, 59, who has been 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 (arthritis, I thought), and once, when at work, a dull throbbing pain in my right rib cage.
The literature (including a study write-up by my very own oncologist) stated an avg. survival rate of 2-3 years for guys with advanced prostate cancer. Grim! It reminded me of when I was first poz, and AZT was the ONLY drug available. (I thought then: I've probably only got 5 good years, if that.) For my cancer, I started on the injectable drug 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. Testosterone is what feeds my cancer,
so, it has to be shut down completely, using hormone therapy. (And because that cancer had already spread when it was diagnosed, I still have my cancer-filled prostate gland. I was told by my oncologist that they don't know if the cancer only spreads via the gland, or also via sites that it has spread to. Lots still to learn. )The nasty aspect of prostate cancer is that, if need be, the cancer will make its own food (testosterone). When I found that out, it blew my mind and depressed me. I can imagine the cancer one day saying: "Okay buddy, you've fucked around with us enough with your cutting-edge drugs. It's time we started making our own fuel (testosterone) so we can take over."
The Xtandi 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 possibly effective 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 recently found out from the pharmacist who authored the study, at Toronto General, that another patient has had to go on Xtandi. He is on much the same combo as I am, so the knowledge gained by my case is/was useful. I was sorry to hear about him, but happy to hear that I have helped his specialist modify his regime to allow him to take this drug. It doesn't work for every man (there is a biomarker that one may have that severely reduces its effectiveness). BUT, I'm hoping Xtandi buys him at least 3 good years, as it has done for me.
I know I will be among the 10-15 per cent of men who survive until the 5 year mark (in 5 months). 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? I am convinced that there is a spirit world, so, when the time comes I will transition. It’s supposed to be a beautiful place. ;-) And, we do have doctor-assisted death now here in Canada, so that is also a relief. I have suffered a lot over the course of my life, due to the side effects of drugs for HIV, but there is a limit.
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 the hormone therapy and no testosterone. I’m on metformin for that.
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. A recent development is not a welcome one. Due to the metabolic syndrome (again, caused by the hormone therapy), I have mildly elevated blood pressure. (systolic readings 140 - 150). So I’m on low-dose chlorthalidone. Am happy to do this because the longer I’m on hormone therapy, the greater the risk of heart attack or stroke.
I’m enjoying the small things in life. Aside from my fitness routine, and making lots of good food, I have a third hobby :song writing and learning to play the keyboard. And I 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 am not bothered by the fact that I have no sex drive due to having almost zero testosterone. There is so much more to life. It has been liberating. There are guys I see that I wouldn’t mind being physically close to, but sensual sex (massage, etc.) is all I would want. This would have to be negotiated/discussed ahead of time.
Another recent development: I read a piece taken from the Washington Post (Faschia: why this body tissue may hold health clues Author: Rachel Damiani) about faschia. Could it be that by working my fascia (with a foam roller and other devices) I have been helping to keep my cancer in check? A medical investigator mentioned in the article who also has prostate cancer is doing just that because he thinks it may be beneficial. Who knows? Something is working in my favour. So, my routine will remain the same.
Cheers! Brian.
I am a GWM, 59, who has been 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 (arthritis, I thought), and once, when at work, a dull throbbing pain in my right rib cage.
The literature (including a study write-up by my very own oncologist) stated an avg. survival rate of 2-3 years for guys with advanced prostate cancer. Grim! It reminded me of when I was first poz, and AZT was the ONLY drug available. (I thought then: I've probably only got 5 good years, if that.) For my cancer, I started on the injectable drug 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. Testosterone is what feeds my cancer,
so, it has to be shut down completely, using hormone therapy. (And because that cancer had already spread when it was diagnosed, I still have my cancer-filled prostate gland. I was told by my oncologist that they don't know if the cancer only spreads via the gland, or also via sites that it has spread to. Lots still to learn. )The nasty aspect of prostate cancer is that, if need be, the cancer will make its own food (testosterone). When I found that out, it blew my mind and depressed me. I can imagine the cancer one day saying: "Okay buddy, you've fucked around with us enough with your cutting-edge drugs. It's time we started making our own fuel (testosterone) so we can take over."
The Xtandi 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 possibly effective 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 recently found out from the pharmacist who authored the study, at Toronto General, that another patient has had to go on Xtandi. He is on much the same combo as I am, so the knowledge gained by my case is/was useful. I was sorry to hear about him, but happy to hear that I have helped his specialist modify his regime to allow him to take this drug. It doesn't work for every man (there is a biomarker that one may have that severely reduces its effectiveness). BUT, I'm hoping Xtandi buys him at least 3 good years, as it has done for me.
I know I will be among the 10-15 per cent of men who survive until the 5 year mark (in 5 months). 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? I am convinced that there is a spirit world, so, when the time comes I will transition. It’s supposed to be a beautiful place. ;-) And, we do have doctor-assisted death now here in Canada, so that is also a relief. I have suffered a lot over the course of my life, due to the side effects of drugs for HIV, but there is a limit.
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 the hormone therapy and no testosterone. I’m on metformin for that.
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. A recent development is not a welcome one. Due to the metabolic syndrome (again, caused by the hormone therapy), I have mildly elevated blood pressure. (systolic readings 140 - 150). So I’m on low-dose chlorthalidone. Am happy to do this because the longer I’m on hormone therapy, the greater the risk of heart attack or stroke.
I’m enjoying the small things in life. Aside from my fitness routine, and making lots of good food, I have a third hobby :song writing and learning to play the keyboard. And I 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 am not bothered by the fact that I have no sex drive due to having almost zero testosterone. There is so much more to life. It has been liberating. There are guys I see that I wouldn’t mind being physically close to, but sensual sex (massage, etc.) is all I would want. This would have to be negotiated/discussed ahead of time.
Another recent development: I read a piece taken from the Washington Post (Faschia: why this body tissue may hold health clues Author: Rachel Damiani) about faschia. Could it be that by working my fascia (with a foam roller and other devices) I have been helping to keep my cancer in check? A medical investigator mentioned in the article who also has prostate cancer is doing just that because he thinks it may be beneficial. Who knows? Something is working in my favour. So, my routine will remain the same.
Cheers! Brian.
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