Mets Day 320 - Duloxetine for incontinence?

My sister, a nurse anesthetist, alerted me to the December 2012 issue of Current Bladder Dysfunction Reports.  CBDR is a British medical journal with slightly better circulation than Current Views On Proctology.  The CBDR article of interest was titled, "Management of Male Voiding Dysfunction after Radical Cystectomy and Neobladder Reconstruction", which is exactly what I'm dealing with.  The article noted that 28% of patients with a neobladder have nighttime incontinence (tell me about it), and there is little research or information on what to do about it (as I've learned).  The report describes the treatment of neobladder incontinence with Duloxetine, a serotonin-norepinephrine reuptake inhibitor (SNRI) manufactured and marketed by Eli Lilly under under the brand names Cymbalta, Ariclaim, Xeristar, Yentreve, and Duzela.   In concludes that "the off label use of Duloxetine for SUI [stress urinary incontinence] seems promising."

Here is the link to the publication (Current Bladder Dysfunction Reports,December 2012, Volume 7, Issue 4, pp 286-293,Management of Male Voiding Dysfunction after Radical Cystectomy and Neobladder Reconstruction, by Richard E. Hautmann).  Here is the Abstract:

"At centers orthotopic bladder substitution (OBS) is the preferred method of urinary diversion following radical cystectomy (RC). Daytime and nighttime incontinence (UI) are reported in up to 13% and 28% of cases, respectively. SUI is the most common reason for daytime leakage, while an absent vesicourethral reflex with reduced external sphincter tone is associated with nighttime UI. A PubMed search disclosed a paucity of data for any treatment modality, the absence of prospective randomized trials and the existence of few retrospective case reports or small case series with limited follow up. Conservative management has limited value. Pharmacologic treatment for enuresis is effective in select OBS patients, while the off label use of Duloxetine for SUI seems promising. Surgical approaches include adjustable and nonadjustable slings as well as the ProACT system in mild stress UI. The need of intermittent self catheterisation (ISC) after slings seems to be very high. Implantation of the artificial urinary sphincter AMS 800 (AUS) is the standard treatment for severe stress (UI). AUS is a relatively safe, effective continence procedure for patients with OBS and severe SUI. Complication rate, urinary symptoms, and quality of life of these patients as determined by validated questionnaires are acceptable."

That's the good news.  The bad news is that Duloxetine failed the US approval for stress urinary incontinence amidst concerns over liver toxicity and suicidal events. Duloxetine was approved in Europe for SUI, where it is recommended as an add-on medication instead of surgery. 

In the US, Duloxetine is approved in the US for major depressive disorder and generalized depressive disorder.  It can also relieve the symptoms of painful periphia neuropathy, particularly diabetic neuropathy, and it is used to control the symptoms of fibromyalgia. 

So the question is whether I should try Duloxetine for my incontinence.  I've already emailed Dr. Schoenberg at Hopkins and asked for his opinion.  I'll also ask Dr. Plimack at Fox Chase when I see her next month, and my local urologist when I see him in early April.  The question is, what's worse:  incontinence and not sleeping, or the risk of liver toxicity and suicidal events? 

Mets Day 319 - cancelled cysto

I supposed to have a a follow-up cystoscopy last Friday, to try to further assess whether the urethral scarring had gotten worse, and continue the search for a solution to my nighttime incontinence.  On Thursday, however, the doctor's office called and cancelled the appointment, saying that the doc was not going to be in the office on Friday.  The next opening wasn't until April.  Grrr.  I was not happy.

On Saturday night I woke up at 4 am with a wet sheet and mattress.  The pad that I was wearing in  my underwear had somehow slipped off.  I wasn't able to get back to sleep, and was groggy all day.  I never know how much or how little sleep I am going to get each night, and that of course sets the tone for the entire day.  It makes impossible having any sort of a predictable schedule. 

I am frustrated that there is no obvious solution to my incontinence.  It's strange, because incontinence and sleep deprivation are not as serious as metastatic cancer forming secondary tumors.  I have accepted the fact that there is nothing that I can do about whether or not the cancer spreads, so I have let go of that concern.  It is out of my hands, and I really don't think about it very much. But because I think that there must be a solution to the incontinence, I have not let go of that.  Plus, it directly impacts me every day.  I deal with it as best I can, but I hope that it can be alleviated. 

Mets Day 306 - I'm going to be a grandpa!

After sitting on the news for a month, I can now disclose that I'm going to be a grandpa!  Chelsea is due in September, and she and Josh are over the moon with excitement.  Jennifer and I and the rest of the kids are thrilled.  It is wonderful to see your children maturing into parents, and see the cycle of life turning with the creation of a very personal next generation.  No word yet on the gender.  Jennifer said finding out was her incentive to push, but I suspect Chelsea and Josh will want to find out so they know which color stuff to get.

Chelsea and Josh are considering whether they want to move into our basement apartment and sell or rent their Arlington condo.  I think that they are balancing their desire for independence and privacy, which I fully understand and agree with, as well as their close-in location, against the cost savings and convenience of having family one floor away.  We've told them that they are more than welcome, and are happy to abide by whatever ground rules they want to set.  

This exciting news has helped me adjust to my newfound status of tired retired.  Apart from my ongoing dabbling in the law, I've been filling my days by reading (a friend recommended Robert Jordan's Wheel 14 volume Wheel of Time series; I'm in volume 5 and still trying to decide what I think about the series); planning travel (a trip to Utah in early March, then to Florida in late March, then our Europe trip this summer); church-related work (I'll be doing regular volunteer work at our church's Washington Temple in Kensington MD); and mostly ignoring Jennifer's honey-do list of home projects.  If Chelsea and Josh decide to move in, I'd have a bit more incentive to work on that home project list.  Motivation is a good thing.

Did I mention that I'm going to be a grandpa?  Yay!

Mets Day 302 - early retirement

Since the start of the year, I have been working less than 20% of a full-time schedule.  I go into the office once or maybe twice a week, rarely for a full day.  Other days I can check my emails from home.  It's been a strange transition, going from a mindset of trying to push myself on a full-time schedule, to a minimal schedule.  I've been surprised at how, on some days, I have little motivation to do much.  Then I realized that there is a correlation between those nights were I get a lousy amount of sleep and the days I feel lethargic.  I'm still trying to puzzle out why that is so. 

Last fall, one of my treating physicians, as well as the sleep disorder psychiatrist, wondered if my inability to sleep was in part caused by the stress of trying to work full time, the nature of my work, the worrying about my metastatic cancer, as well as my nighttime incontinence.  I didn't think there was much to that -- I have learned to not get to stressed out about stuff I can't control -- but I accepted that there was a possibility that, in a subconscious level, there might be some validity to that observation.  I decided, however, I would try letting go of the work-related stuff and see if that made any difference.  So far, it hasn't.  I'm going to give it some more time and see how it goes. 

As far as my options go for treating the incontinence, it appears the artificial sphincter is not appropriate for me.  I have an appointment with a urologist late this month who will do another cystoscopy and see if there is more scarring.  I am still able to self-catheterize -- I did so last night -- so if there is scarring, it is not as bad as it was last July and August, when my ureter was nearly completely closed.  But I also find that my urine flow is weak and fitful, going in stops and starts.  This tells me that my neobladder is not operating as it should. 

There is a possibility that the valve from my original bladder, which was sewn into my neobladder, is the culprit, by not staying closed when I am laying down.  My sleep issues are magnified by the fact that apparently have a hyper-sensitive nerve that waves me up when I leak.  I am learning that both of these issues are uncommon, and so far I have not found anyone who knows how to solve both, short of changing from a neobladder to an ileal conduit.  Unfortunately, the specialist that the doctor from the University of Chicago was recommending -- recently moved from the University of Maryland to Yale, so that local option no longer exists.  I'm continuing to poke around and see who can best teat my unusual set of symptoms.