Monday, Feb 26, 2018
Going away from home for a while. 

For some odd reason I thought that this year's winter Myrtle Beach would be different - that being in a warmer climate would somehow make me feel better and some of the things I've been working on would magically be cured.

Here are some improvements that I noticed while at  Myrtle Beach: 

Incontinence - while I continue to do Kegels religiously, and my leaking is better, I still have months to go before this issue is fully resolved. I have several nights where I only have to get up twice a night to pee (this may be the best I'll ever do). But every once in a while I'll be up three or more times. Luckily I can practically sleep walk to the bathroom, do my business, and crawl back into bed and fall right asleep. On those few nights that I get up a lot or can't fall asleep, a nap is in order the next day.

 I have noticed a few things: I used to "pee freely" in the morning and in the evening/at night. During the middle of the day I just leaked into the pads. But now I'm peeing pretty much around the clock, and the pads are not as full as they used be, but I change them quite frequently because I can't sitting around in my own pee - I worry about odor.  

Another thing that's kind of odd is that the "urge" to pee has slowly returned. Initially after surgery it was more of a guessing game. I guess when nerves are involved there is some healing there as well.

As far as my back, I walked on the beach a few times a week, and I did strengthening exercises a few times a week. I tried to do my stretches every day, followed up with some time in the hot tub. There were times when my back felt great, and other times when it was tight as hell. When my doctor says it will take a year to two years to fully heal, I now believe him. It's been seven months - I just have to continue to do the work. There are no shortcuts.

I think I noticed a change from taking XTANDI - loss of muscle mass. I looked in the mirror the other day and my arms and legs looked skinnier. I will need to do some weight lifting when I get back home but I may need some help from my physical therapist about what exercises to avoid. I don't think I need to lift very heavy weights to counteract the hormone's effect on muscle mass.

We have still done and seen a lot of fun stuff at Myrtle Beach this year.  I hope that if/when we come back down next year that I am not as limited physically so I can walk faster and dance the Shag!

When we get back home in early March I'll find out my latest PSA scores - this will tell us if I stay on Xtandi or have to switch hormones. 

Friday, Jan 26, 2018

Thoughts on incontinence.

As I mentioned in an earlier post, I experienced my third bout of incontinence in 2017, after spine surgery and having a catheter in and out for the month of August.

After surgery my first efforts at recovery involved a lot of walking. After a while (it seemed like forever to me) my surgeon agreed to physical therapy for my back, which was very stiff. When that was completed my back felt much better and I then concentrated on incontinence.

I started physical therapy for incontinence in late November and while I am still not 100% continent, I am much improved.

2018 will be a year where I continued to work on my back and my bladder. I will continue to walk, do stretching and strengthening exercises, and do my Kegels as instructed by my therapist.

I'm not a patient person by nature. My surgeon says my back won't be fully healed for another year and a half. My urology therapist says it will be months before I'm fully continent. The important thing is to keep at it - what other choice do I have?

January 26, 2018

Thoughts on XTANDI.

I started taking XTANDI (Enzalutamide) in late August. When I first met with my oncologist after taking XTANDI, I was claiming that I didn't notice any side effects. But shortly after that, I experienced hot flashes again (they had stopped after having Lupron injections for a while). I then started  having bouts of fatigue where I was napping for two or three hours a day. Then my sense of taste was affected - most noticeably Dunkin Donuts Coffee tasted really bad - so much so that I couldn't drink it. But all of these side effects ended or greatly reduced after a while.

The fourth side effect I noticed was a pain in my upper thigh, close to my hip. It really hurt when I got up after sitting for a while, and would ease off after I loosened up. Common sense
told me it was muscular, and my oncologist verified that it sounded like a side effect of XTANDI, but deep down I was worried about a reoccurrence of cancer.

I asked my oncologist the leg pain could go away - just as the other side effects had. This was on a Monday (he said yes). By Wednesday morning the pain had disappeared (after a month). So I guess I need to be patient if I experience more XTANDI.side effects. I also need to talk to my doctors and/or nurses when I notice some weird symptoms rather than assume that my cancer is back.




  

Incontinence, continued

I may have mentioned this in an earlier posting, but I have had incontinence three times due to prostate related treatments. 

The first time was 6 years ago after my original prostate surgery. I was catheterized for 3 weeks due to swelling, but after that subsided I learned how to do Kegel exercises and regained continence on my own. I don't remember how long it took. I continued to have a strong urge to pee but at least I wasn't leaking. I used the med Oxybutynin for quite a while but I gradually learned when and where not to drink lots of liquids, and only used Oxybutynin when we were on trips. 

The second time was January of 2017. I had a procedure called a cystoscopy (no fun) where they stick a tube up your penis to have a look at your bladder. You're awake and it is rather unpleasant. That night I couldn't pee on my own so we went to the emergency room and they catheterized me; I had the catheter in for a week, during which I had a UTI.  

We left for a month in South Carolina shortly after and I was incontinent while we were down there. I thought I could regain continence on my own but I was leaking the whole time we were in S.C. (no fun!). When we got back I found out that there is physical therapy for incontinence; by the time I started it was April, and continued it until June. I think it took long because: 1) I was 6 years older 2) I had the UTI complication. 

The third time was after my spine surgery on July 25th. The entire month of August was spent getting a catheter put in, having spasms where I couldn't pee, and going to the ER to get catheterized again. I got another UTI. At one point my pee looked like coca cola. After three trips to the ER, the catheter was finally removed. They taught me to self catheterize just in case. 

While I was healing from the surgery, my surgeon just wanted me to walk. I did the Kegels on my own. He finally agreed (at my prodding) to physical therapy for my back which helped my back a lot. I continued the Kegels. Finally I started PT for incontinence again in November. That was four months after my surgery, but I am counting three months since they stopped having to catheterize me.

My original therapist, a woman, retired. My new therapist is a guy. I liked/like them both. I was a little concerned that because of my spinal surgery, PT may not work as well now. My new therapist says that if you can control the defecation muscles, you can train the muscles that control urination. 

He also says that continence is regained in the following order: 1) sleeping, 2) sitting 3) standing 4) walking 5) lifting. I'm getting closer to controlling sleeping and sitting. I'm hoping that these will be in good shape by the time we leave for S.C in late January. I'll continue to work on it while we're in SC and most likely get another course of physical therapy in March. Hopefully I'll be squared away by spring!

XTandi, continued

The list of side effects from Xtandi keeps growing. 

My sense of smell and taste has been affected. My oncologist verified this and had a term for a change in tastes due to cancer meds. 

I used to like Dunkin' Donuts Coffee. I tried it in a couple of locations and it all tastes the same - blah! I tried Starbuck's and it tastes funny too. I guess I'll be a tea drinker for the time being (I couldn't tell you what good tea tastes like). 

I also have these periods of fatigue that seem to come and go. Sometimes I'll take a nap, sometimes I don't have time and that fatigue goes away. My oncologist calls it a "cancer fog".  

I am also on Lupron and that gave me hot flashes but I didn't notice any worsening of this side effect. In fact it seem to have subsided a bit. 

The latest side effect is very odd. If I sit for a while and then try to get up, I get a pain in my thigh (about a five on a scale of one to ten) and a feeling of weakness in that leg. If I walk around a bit the pain and sense of weakness goes away. This has been going on for about a week.  

This is kind of disheartening because my back stiffness, thigh numbness, and incontinence all seem to be improving (though slowly) and then I get another physical ailment. I was a little bummed out yesterday but I'm back on the optimism horse again today. I realize that some people have it so much worse. Plus as with the hot flashes, maybe this pain will be short lived.  

If I'm lucky, I'll be on Xtandi for 2 to 4 years before it stops working. Then it'll be on to another drug? I'm hoping that they'll have immunotherapy working for prostate cancer by then.

I mentioned some short term things that I wanted to accomplish going forward.

I was able to complete a Polish class, which will help my genealogical research.

I also completed a genealogy class. 

But I passed on tutor training for Literacy Volunteers for now.

My back was just too stiff for me to sit in class all day (the other classes were a couple of hours). Plus my continuing incontinence makes me nervous about being in public for long stretches.

My back is better now, and I start physical therapy for incontinence tomorrow.  I think I should be squared away to start tutor training in the spring.

Maybe others would be more determined than I am, but you have to be comfortable in your own skin while recovering from advanced prostate cancer treatment.    

I thought there were no side effects from Xtandi, the new high-powered hormone that I'm now on. I think I spoke too soon.

I take warfarin because of a heart defect - it reduces my stroke risk when I go into atrial fibrillation. I get monthly blood tests to check my warfarin levels, and they started getting inconsistent after being steady as a rock for a long time. My cardiologist checked the literature and sure enough, Xtandi can interfere with Warfarin. He made a dosage adjustment and it appears that my warfarin levels are now good.

I went in for a regular checkup with my cardiologist and my echocardiogram showed my heart rate to be elevated. He scheduled me for an EKG and possible holter monitor the next week. In the meantime he told me to up my metoprolol dose from 50 to 100 mg, and to check my heart rate on my home blood pressure machine.

While I was seeing some slower heart rates, I was still seeing several fast ones as well. The EKG showed my heart rate to be fast, and he increased my metoprolol dose to 150 mg, and sent me home with a holter monitor for a day. 

I haven't heard the results of the holter test, but I'm thinking I'll be stable again.

Bottom line: powerful hormones can affect your body in many ways. 

PS - my PSA has dropped from 20 to 10 to 7.5. Every month should show lower readings. This is due to the Xtandi.