I want to wish everyone a very Merry Christmas! This time of year can be very tough on those of us afflicted with terminal diseases and others close to us. It’s so easy to start thinking about the future and lose sight of staying in the present, which is where the happiness is. My hope is that all of us can share in the joy around us this holiday season.
Yesterday my wife suggested we get a baseline for my stamina in a normal temperature environment. Sounded like a good idea to me so off to the mall we went.
It felt like 70-72 degrees as we started our walk around the perimeter. My pace was slow, but steady. By the time we were done, we walked ¾ of a mile and I did not need to rest once. I was quite happy considering that in the mid 80s heat I only made it 200 yards, had to stop and rest four times, and had to duck into an air conditioned building for a reprieve.
I’m hoping to greatly improve on this once I start water aerobics.
Looking back, the first sign was about three years ago. I was having trouble opening a Gatorade bottle. I asked my wife if she would try and she opened it without a problem. I didn’t realize at the time, but it was the first sign of my androgen deprivation therapy drugs, Lupron and Casodex, eating away at my muscle mass. Over the last month or so I’ve become increasingly aware of significant fatigue, strength, and stamina issues. It all came to a head a few days ago.
My wife and I flew to Ohio to see some high school friends and visit the Cincinnati Zoo in hopes of photographing Fiona, their celebrity baby hippo. On the day we went to see Fiona it was in the mid 80s, which wasn’t good for me, but I thought I could handle it for the walk to Fiona’s pool. (My drug regimen includes multiple drugs that make it very difficult for me to cool off. I usually hang out in areas that are 75 degrees or less.) Once we got there and started in I knew I was in trouble. After walking about 100 yards, stopping twice to rest, I was totally exhausted, overheated, covered in sweat, and done. I was too hot to even consider trying a scooter. With only another hundred yards to go, I had to turn back. I was devastated by my weakness. I felt my world suddenly became very small, very inaccessible. As evening came, I started to feel I was dying right before my very eyes. The next thing I knew I was sobbing uncontrollably.
I’m going to start taking water aerobics to try to regain some muscle mass and stamina, but I suspect I’ve joined the scooter generation. My psychologist told me years ago that cancer and its treatment would greatly increases the rate at which I would age and that doors would start closing much sooner than I’d expect. I’m starting to understand what he meant.
Saw my oncologist just the other day. My PSA is down to 14.4! It’s not a big drop, but any drop, or even level, means the xtandi is still working. I’ve been on the xtandi (plus lupron) for five months or so. I believe its median time to quit working is around three months, so I’m well ahead of the game.
I also can finally report major progress on getting off my antidepressant, geodon. Recall that it had gone toxic on me, producing extreme restlessness an hour or two after I took it. Conventional tapering down wasn’t working I was so addicted to it. My shrink suggested we use a bridge drug to transition. We started that a couple months ago. Today I took my last dose of geodon.
I had no idea all the side effects I was suffering from under geodon. I started taking it when I was very depressed, and it worked great at relieving the depression so I was happy. Now that I’m done with it I see what really happened. It considerably dampened my energy level and spirit. While on it I was just marking time until my death. Nothing excited me. Now I feel as if the world has reopened for me.
To ensure the depression doesn’t return I upped the dose on another antidepressant and there’s always the bridge drug. I’m going to try to get off the bridge drug as well. I started out at a dose ½ to ¼ of a typical patient and am shortly going to start tapering down on that. I’m trying to minimize the drugs I’m taking.
Last but not least, I had an ischemic stroke. The good news is I fully recovered. I was at lunch and felt my thumb and middle finger of my right go numb. It just felt so weird I knew it was a stroke. Off my wife and I went to the ER. By the time we got there I could only talk intermittently. They loaded me up with stuff. My blood pressure was 226/183! Two injections of some magic medicine and it was more normal. I had to spend the night at the hospital, but was 95% by the next morning. I’m now on double the high blood pressure meds and doing fine.
A lot has happened since my last post. When I last wrote I was starting out on a new drug regimen that sounded a bit suspect. Well, it was. Didn’t take long for me to crater on it. So the psychiatrist and I moved on to another approach with different drugs. I cratered on that as well. My anxiety level was going thru the roof. I wondered if I had any life left worth living. On the cancer front, things were going quite well. The xtandi was holding my PSA to under 17 even though there was no expectation that it would necessarily do so. I should have been delighted, but if you have a life filled with bad feelings, what’s the point? Especially if you see no end in sight.
I decided to stick with it with the psychiatrist and go for drug set number three. After all, what did I have to lose, my life was shit. I doubled up on one drug, added a new drug, and put in place a plan taper down/off the offending drug over six weeks. Almost immediately I felt better than I had in years. I was just plain shocked how good I felt. Before I had to take 5-6 xanax a day just to deal with the anxiety, suddenly I was down to 1 a day and there was no depression. It was truly a miracle.
The stress levels were still there; it would take some time for them to subside. Unfortunately, the stress levels needed to drop sooner than they did. I had an ischemic stroke last week. It was really bizarre and scary being unable to form words for a time and have parts of my body go numb. I was one of the lucky ones that got over it without any ill effects in just a couple days.
So here I sit here now, beaten down by three months fooling around with drugs, but revitalized by the latest set and buoyed by my continued good results on xtandi. We’ll see over the next six weeks if the psychotropic drug results hold up. I think they will, but I have to wait and see. Similarly, I’m hoping the xtandi continues to do its stuff. I’ve started discussions with my oncologist about next steps when it stops working.
Right now I’m just glad to be alive and on the mend.
Almost 4 months have passed since my last update. Every time I was about to write a post, something would happen and I’d decide to wait until it was resolved. I don’t feel I can keep doing that, although there are still unresolved issues.
First off, at the beginning of December my PSA was measured again. We were hoping that it would drop from 50, because I went off the Casodex (see November 2016 post). It rose to about 80. I was upset, but it was what it was. It meant the Lupron was failing. I made the decision to go on Xtandi instead of Zytiga as my next drug, because it had fewer side effects. I was concerned about depression after one of my readers mentioned her husband suffered horrible depression and had to get off of it. My oncologist said it’s not a common side effect, and so we began the process of getting the Xtandi. I say process, because I never expected it would be so involved and take so much time.
Xtandi, like Zytiga, costs about $10k a month. I’m not old enough to be on Medicare and, unfortunately, my health insurance has lousy drug benefits (but is pretty good otherwise). Thus started a series of interactions between my wife, my oncologist’s staff, my insurance company, a “specialty” pharmacy (a type of pharmacy I had never heard of), and the drug manufacturer. Specialty pharmacies handle high cost medications. They’re supposed to work with the patient, their insurance company, the manufacturer, and foundations to try to find a way to make the drugs available at an affordable cost. It took over a month, but they figured out how to get my Xtandi for no out of pocket expense on my part!
Xtandi is a second generation anti-androgen that blocks the cancer from being able to eat its food – testosterone. As I started taking Xtandi I stayed on the Lupron as well, because Lupron could be blocking different pathways for the cancer. Some oncologists take their patients off Lupron, but mine wanted the extra protection.
One month later my my PSA was rechecked, and it had dropped from about 80 to 17.1! We were all shocked and delighted. Whether it will continue to drop is an open question, but that big drop bought me several months of life.
There have been two primary side effects of Xtandi, anxiety and a return of the hot flashes/cold sweats. both have been significant, but tolerable on their own. No depression.
Tolerable on their own was where the rub came in. Over the prior 3-6 months, one of my anti-depressants was becoming increasingly toxic. I was suffering from extreme restlessness starting about 2 hours after I took the drug and the restlessness lasted from half an hour to three hours. Extreme restlessness doesn’t sound that bad until you find out that it means my butt, legs, ankles, and toes would start clenching and unclenching almost uncontrollably. When I added that to the side effects from Xtandi, I was only getting 3-5 hours a day of “good time”. I decided I had to do something, and that was to cut down or go off the anti-depressant. Hopefully, I could replace it with another one that wasn’t toxic.
The taper off started 17 days ago. I went from 40 mg in the morning and 40 mg in the evening to 20 mg in the morning and 40 mg in the evening. I was supposed to stay on this for one week, maybe longer and then drop to 20/20 (and so on). Well, I’m 17 days into it and I’m still at 20/40.
I was totally unprepared for what happened. The first few days I felt good to great for 6-7 hours and then anxiety, nausea, jaw clenching, loss of focus, memory degradation, constipation, jitters, and headaches would set in.
The nausea was terrible. My oncologist prescribed an anti-nausea drug they use for cancer patients. It did nothing except worsen the constipation and headaches. I was able to find relief from the nausea from my psychologist. He suggested alfalfa. I got it at a local Whole Foods supermarket and it worked quickly, completely, and with no side effects.
As time passed, the evening side effects have decreased, but as they decreased in the evening, they started appearing earlier in the day. I’m lucky to get three good hours a day now. During the high anxiety periods, I worry that this will never end, which only increases the anxiety. The anxiety attacks appear to trigger hot flashes, which also increase my anxiety. Cue the Xanax to help control the situation.
This process is moving so slowly that I’m not sure when it will stabilize. I’ve got two trips coming up fairly soon. In concert with my psychiatrist I have decided to put a hold at 20/40 until I get back. At 20/40 the restlessness is gone and the depression hasn’t returned, so I may end up staying at 20/40 or stopping at 20/20.
On balance some great news, but significant challenges remain. Stay tuned.
One of the best descriptions of what it’s like to have cancer that I’ve ever read. It’s generated tons of hits and numerous instances of media coverage. It’s that good. The only thing that doesn’t apply to me at all is the section on friends and relatives cutting you out. I haven’t experienced that at all.
Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.
This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.
I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to…
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