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Incontinence

daytona19
Posts: 56
Joined: Sep 2014

Hello Panel,

I am 67 and after my surgery in 2005 it took me 4 months to control my incontinence. After my radiation in 2009 it took 2 months. Then in 2012 I started on Bicalutamide and Finasteride and it got bad. and finally in 2013 and got it almost under control ( needed 2 pads a day). Now I got a shot of Trelstar and it is bad again.

I do Kegels all the time and even went to a therapist for bio- feed back. Does anyone take any medicine that helps? I don't want to do surgery if I can help it. 

Thank you fro any ideas.

daytona19

Old-timer's picture
Old-timer
Posts: 178
Joined: Apr 2011

 

datona 19,

 

I have incontinence caused by scar tissue on the uretha. I tried to improve it with Kegel exercises. No luck. I looked into other options and seriously considered the AUS 800. But I was in my mid-80s and I decided that the surgery involved might negatively impact my life style. I feel certain that I made the right decision.

 

Dealing with incontinence is a bummer, but it has not slowed me down appreciably and I continue to carry on a very interesting life filled with enjoyable activities.

 

I use Depends (a different brand), pads, and Cunningham clips–not all at the same time, of course. I keep my body clean. I am fortunate that I do not leak any while in bed. That is a true blessing. Should you be interested in more specifics about how I manage this issue, I am willing to explain more. By the way, my incontinence is urine only. This is another blessing!

 

I am 21 years older than you. I still drive my car, but I would not be able to keep up with a racing man!

 

Best of luck to you.

 

Jerry (Old-timer)

VascodaGama's picture
VascodaGama
Posts: 2544
Joined: Nov 2010

Jerry, your posts are always positive and funny. The comments are timely and I like to read them all. I would like very much to meet you in person one day (I hope I can do it before winning the EuroMillions jackpot).

Daytona19

I am sorry for the facts with the incontinence. I never experienced such but sometimes I get nocturia three or four times of urination at night) which I relate as a “mild” side effect from the treatments I have endured along the 15 years of my PCa case. In any case, I have read many reports by others which findings may be of help to you.

Some guys commented that did kegels but wouldn’t feel the contraction of the belly muscles they were working-out. Some also commented about the effects from finasteride and some related the problem to the type of drinks (like beer) that caused them to pee more. Etc, etc, etc.

RP survivors in particular are common cases with the incontinence problem because of a less precision cut at the sphincter tiny muscles. These are prune to permanent failure even if the local nerves were reserved. RT survivors confront the problem due to damage of the nerve tissue or may confront stress incontinence due to muscle weakness. Most probably HT survivors are prune to urge incontinence due to muscle spasm or contractions (neurological effects), also known as overactive bladder.
From your shared information you may have experienced them all.

Consequently, medication, changes in lifestyle and diet alone may not help you but you could try to “mix” these and find which would work better at certain occasions.

I read someone saying that masturbation is good to get those localized dormant nerves to be put into action. I also read about electric charges of the belly muscles (that do not respond to kegels exercises) which have improved the situation to acceptable levels. Medicines like the Alpha-blockers (all types) or the Oxybutynin (pills, patches and gel-form), solifenacin and onabotulinumtoxinA injections, etc., are good in cases of urge incontinence because of their anticholinergic “powers”. Antidepressants had successful results in cases of stress incontinence (action at sphincter muscle) highly effective in nasty cases of nocturia.
It seems that the treatment will depend much on the type of incontinence one has. Medications also got their own side effects that we should care and know in advance. Antidepressants make the patient feel tired so they shouldn’t be taken if we are drivers as a professional. Etc.
You could also try taking supplements after discussing with your HT doctor as these may interfere with the action of the HT drugs.

In this link you find a long list of useful medications;

http://www.webmd.com/drugs/condition-3254-Urinary+Incontinence.aspx?diseaseid=3254&diseasename=Urinary+Incontinence

Best wishes for improvements,

VGama

 

daytona19
Posts: 56
Joined: Sep 2014

Hi V Gama and Old timer,

I did well with my incontinence until I started on Finasteride and Casodex. Maybe I will try Oxybutynin or what is the electric charges? 

V Gama you have said that our background is similar so I want to share with you something I am doing.

I am not happy with my Doctor's casual attitude with my Bandit and as you said I should get another opinion. At the urging of a friend I called Doctor Dattoli  in Sarasota Fl.

He is the Doctor who treated Doctor Myers for  his cancer. I sent him all my records and he called me and spent a hour on the phone. He feels strongly that I have cnacer of the lymph nodes and it needs to be treated.

He is snding me to Sand Lake Imaging testing center in Orlando Fl. I will get a USPIO enhancd MRI/CT fusion study.The test evaluates abdominal and pelvic lymph nodes as well as soft tissues site and other organs for abnormality. I will also obtain an 18-floride PET/CT scan to evaluate the bones.

I will meet with Dr. Dattoli on June 23 qnd June 25 to get the following:

1) A 3 D color flow doppler ultrasounf with a penile imaging.

2) Possible bone mineral densitomtry scan ( act scan ) to evaluate the risk of osteoporosis. This is important baseline test to have if hormonal therapies are utilized. Which I am sure they will be.

3) Possible fine section ( 2 mm) helical scans.

Based on the outcome treatment will be a full course of DART ( dynamic adaptive radiation therapy) using for dimensional image guided intensity modulated external beam techinques. Which could be 9 weeks of treatment. ( there goes my summer vacation)

I didn't think I would be a candidate for more radiation but Dr Dattoli says with the scans he can be precise.

I testing starts June 17 and ges 3 days. I will keep you informed on how it goes.

daytona19                   

    

VascodaGama's picture
VascodaGama
Posts: 2544
Joined: Nov 2010

Daytona19

Thanks for sharing your story and choices. We have discussed already on several topics on your case and I believe that you should follow your intuition. In any case you should care for any over treatment.

As far as I know, the treatment suggested by Dattoli is not exactly the treatment used by Dr. Myers. He did RT as prime with a wider protocol that included the lymph nodes (local and at the iliac). That together with HT put Myers at remission ever since. Myers as all other survivors surely believes and recommends a similar approach to PCa patients.

In the past two years, Dr. Myers has recommended the oligometastatic treatment (radiation of a few number of cancerous spots) based on the results of USPIO scans. However, some guys have reported here that did go through the radiation even with negative scans, therefore engaging on a “blind treatment approach”. This surely has a fixed protocol (field of radiation and Gys) which may or may not include only the lymph nodes (?).

In any case, the series of “9 weeks” of radiation you describe above does not seem to relate to spot radiation but to a repeated RT that you did 6 years ago. In such a case one would risk cases of fistulas (rads over rads) if there is no information in hand of the previous field of attack and absorbed Gys (soft tissue has absorbed limits of radiation).

I think that the modality should be conditioned to aggressive cases. In micrometastases it may be over-treating. I wonder your Gleason score and any positive image study done along your ten years of PCa journey.

I hope you have discussed in detail on the above with Dattoli. What assurances of “repairs” can his clinic provide if things go sour?

Confidence is the moto; you got it and I applaud you.

Best wishes and luck in your continuing struggle with the bandit.

VGama

Your story:
http://csn.cancer.org/node/287947
http://csn.cancer.org/node/291869
http://csn.cancer.org/node/293838

 

daytona19
Posts: 56
Joined: Sep 2014

V Gama

As always you give good advice. The scans are needed as my PSA has more then doubled the last 3 months and the 3 months before also. I agree 9 weeks seem too much and I think that it is a worst case scenario.

Dr. Dattoli feels it is only in the lymph nodes as the PSA would be going up faster if it was in the bones. Unless th scans show cancerous spots I won't be doing the blind treatment approach as I have already done that at Moffitt.

I will discuss in detail about what would happen if things go wrong.

Thank you again for your care and advice.

daytona19

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

...as 1 of the guys V Gama mentioned above. I got it all - RARP, ADT and 40 EBRT sessions over an entire summer. I will be coming off the ADT chemo Eligard sometime in the next 5 months when the last dose wears off.

 

I leak a drop or 2 sometimes when I cough hard or clear my throat, more if I have overconsumed alcohol or am playing serious tug-of-war with my 90 pound labrador retriever and have not fully emptied my bladder first. My urologist told me to just pee often and do the keegles. I do that. I don't leak enough to need even a pad, never at night, but I do get up to pee every night to prevent that.

 

Vasco is a wealth of information on this important topic. I appriciate your efforts on all of our behalf good sir. Smile

VascodaGama's picture
VascodaGama
Posts: 2544
Joined: Nov 2010

Stoniphi

Your comment regarding your 90 pounds Labrador stroked my attention. I also “fight” my big Rhodesian Lion (ridgeback) of 130 pounds, but instead of peeing I get scratched by her nails.

I do not know exactly if you confront incontinence but from your previous posts I understood that you engaged in a series of sequential treatments (the mother of all treatments) placing you at high risk for incontinence and side effects. I hope my above post helps you in finding a solution if such is your condition.
I am eager in seeing your report on the Zeros as soon as the Eligard wears off. In fact, this drug has a short half life period of 7 days, therefore the drug’s “power” losses the effect just after the end of the period of effectiveness of the shot (in your case it should have been in April 2015). However, the recovery in symptoms and body functions takes longer and differs from person to person with many reporting on periods lasting from two to twelve months from the date of the end of the drugs’ effectiveness.

In other words, the drug caused chemical castration (influencing the testes to stop fabricating testosterone) and these require signalling from the pituitary to start producing it again. This function takes time to become normal. In worse cases the system does not recuperate at all subjecting the patient to a permanent condition of hypogonadism. This is scaring and many need TRT treatments. I wonder your test results.

In my experience with the Eligard I started feeling good three months later but the end of hypogonadism occurred six months latter. The chronology was as follows:

Nov 2011: PSA=0.02, T=0.32 (Eligard 6-month shot)
May 2012: PSA=0.02, T=<0.01 (End of Eligard’s effectiveness)
Aug 2012: PSA=0.02, T=0.11 (start feeling libido)
Nov 2012: PSA=0.03, T=0.56 (end of chemo castration, most of symptoms are off)
Jan 2013: PSA=0.13, T=2.52 (complete recovery)

Best wishes.

VGama

Your story; http://csn.cancer.org/node/294201#comment-1500964

 

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

I started ADT 2 weeks after my RARP which occured Dec 27 of 2012. About Jan 10, 2013 I got the first shot of Firmagon, again the next month, then to Lupron for a 6 month shot, then Eligard until my last doc appointment April 30, 2015. I get my next blood test at the end of this coming July. My April 25, 2015 blood test showed Testosterone was 2.2 ng/dl and PSA < 0.02 ng/dl. PSA has been that low (undetectable) since a Feb 2012 blood test. The chemo has been very effective on me, its been all of 2 years 4 months. We know the modality they are using with a combination of treatments, hit the cancer on multiple fronts at the same time. I know I am at high risk for permanent side effects from all of this, but take assurance that the doctor team all agreed that I was healthy and robust enough to make it through with minimal problems. I will share my experience as we go along here.

 

A Rhodesian Ridgeback is the only dog that can be potentially more damaging to the house than a Labrador Retriever - good for you!!! Even better that you play with him. I also get scratched, bruised and scraped from playing really hard with my Labrador.

 

Every day I play very hard with my Labrador. We go out and run/hike/walk and play for 7 miles on trails in the forest near here every day regardless of weather. I average 50 miles a week, not bad for 64. The PCa treatments have slowed me down though. Gratefully, I am not in a race.Smile

 

We find a big stick, she grabs one end and I grab the other and we go to it! We spin around and around, pull and push, jump up and down and have a very very good time playing. If she lets go or the stick breaks, I throw it as far as I can and she retrieves it. Labradors Retrievers LOVE to go get things and bring them back to you. She is an excellent training partner, we both end up sore and tired after every session so we can have a nice nap after lunch. I love her very much. She also has cancer - has been battling mast cell sarcoma for the last 3 years. Like my PCa, it is local. She just got her stitches and staples out from the last (3rd) surgery last Friday and is back to normal now execept the shaved area on her side. The doc and the path lab say it could well be a full recovery though, as the tumor was low grade and very small. I found it when it was the size of a lentil, the surgical margin was 3 cm radius circle of skin on her side. She is only 7 so I am expecting many more years of playing way too hard with her ahead. Smile

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