I’ve been on black cohosh, an OTC supplement, for some time time now to relieve hot flashes from the lupron I have to take. It’s worked fairly well for a year or so, but recently it’s been failing. I’ve had 2-3 killer hot flashes and about a half dozen mini-hot flashes every day. I discussed this with my oncologist at the last visit and he suggested I switch to Evening Primrose Oil.
I wish he had suggested this as my first option. Black cohosh had hot flash breakouts from time to time. The Promrose Oil has shut down even the mini-hot flashes.
If you’re having hot flash problems, I highly recommend you try evening primrose oil, 1000 mg. they say to take it three times a day, but twice a day works for me.
Yesterday, I met with my oncologist. My PSA has risen to the mid 30’s from the mid 20’s two months ago. Not terrible, but not good. The disease continues to make advances.
We talked about when I should go on Zytiga and he admitted that he’s kept me off of it due to concerns that the side effects, especially depression, would be a problem. After thinking about it, I don’t really see that I have much of a choice but to try it out. With Lupron and Casodex alone, my cancer will continue to make headway. If I can’t tolerate the Zytiga, there’s an alternative Xtandi. If they work, they’ll at least significantly slow the advance, until they too fail. If I can’t handle either of them, I’m really screwed.
He volunteered to look into clinical trials for me, which I quickly accepted. I’m hoping for something that’s DNA based and targeted.
All in all a sad day for me. I wish there was some drug or treatment, even chemotherapy, that held out the hope for remission, but that’s not the case with stage IV prostate cancer. The disease just keeps advancing.
I’ll probably get a Provenge treatment before long. They take your blood and build up antibodies within it and then reinject it into the patient. It’s supposed to extend life by 2-3 months. There’s also Xifigo, which is a radiation injection that targets prostate cancer cells. It’s usually administered after bone pain starts appearing. It also has been shown to extend life 2-3 months.
On the subject of bone pain, I go in for an MRI on July7 to look at my lower back and right hip. I think it’s arthritis, but my oncologist wants to be sure it’s not bone pain. Who knows I may be in for an Xifigo treatment shortly.
Just found out another side effect of prostate cancer is loss of taste or food starting to taste metallic. I don’t have the metallic taste issue, yet, but my sense of taste is so diminished that eating is more about sustenance than enjoyment. Still, there are times where food tastes very good. I’m really appreciative when that happens.
Healthline has named YAPCaB as one of the best 11 prostate cancer blogs in 2016. I am humbled and honored by this recognition (http://www.healthline.com/health/prostate-cancer/best-blogs-of-the-year). I think the reason the blog made it was the fact we “discuss the effects of cancer that are sometimes ignored, including those that are emotional and psychological.”
I hope you all feel it’s an accurate portrayal, as it is one of my primary goals. I decided my privacy wasn’t as important as letting other cancer suffers know that they’re not the only ones going thru all this craziness.
Saw my oncologist not too long ago. My PSA was at 27.5. The good news is this is below my reading as far back as October. The bad news is it is increasing at an increasing rate. Unless I get a dramatic drop, which no one expects, in short order my PSA will hit 50. That’s the point at which my treatment regimen will shift to adding zytiga. In clinical trials its been shown to increase lifespan an average of 4-5 months.
I’m currently considered “castrate resistant” which means the lupron and casodex are failing. The prostate cancer is now able to manufacture its food, testosterone, on its own. Zytiga interferes with this process for “awhile”.
Statistically, I have somewhere between 2-3 years to live on average. I also have two other options I can add – Provenge and Xiofigo, which each extend life 2-3 months on average.
I thought getting to this point of being castrate resistant would induce major panic attacks. That hasn’t really been the case. I did have panic attacks the first couple weeks at night, but they weren’t terrible. In some sense I’m relieved. I’d been dreading the time when the lupron would fail, now it’s over and I can get along with my life and death.
Went to the oncologist a few days ago. This was my two month checkup on my PSA. Recall that I had a big, surprisingly good drop in my PSA the time before.
This time my PSA was about 18.5. Still well below what it was months before, but, importantly, more than it was 2 months ago. So I’m still in the “Lupron has failed” category. That’s called castration resistant – horrible name.
Since Lupron (and Casodex) are used in prostrate cancer to stop or inhibit the use of testosterone, they’re the chemical equivalent of castration. Hence, once they stop working, one becomes castration resistant.
The bottom line is being in this category I have, on average, less than two years to live. My PSA levels are already high relative to when most men get classified into this category, so that’s not good. But I’m relatively young and in relatively good health, which works in my favor. Who knows which side my death will fall on.
I do know this transition to castration resistance has had a huge impact on my life. I find it hard to go to sleep. It’s as if I allow myself to go to sleep, I’ll lose a day, and then I’ll be one day closer to death. So now my schedule is totally hosed. I collapse around 5-7 in the morning and sleep until the afternoon, often late afternoon.
I am finding living on this schedule is very difficult indeed. I’ve tried anti-anxiety drugs to get control of this, but that’s been a bust. I’m going to work with my doctor and wife to try to find a way out of this hell.
Dying isn’t as easy as I thought it would be.