Possible IC and Prosate Cancer

[Marty S.]

I am sort of new to this place but am very interested in whatever I can learn to deal with my current problems

First to start I have advanced prostate cancer and have for the past six years. I take a drug called Ketoconazole for the prostate cancer which may (no one believes this however) be somewhat responsible for my discomfort. In any case here is where I am.

I have over the past two years had a progressive problem with urinary frequency and at times pain in the tip of my penis. Back six years ago when I had similar discomfort I was told that most sensations were referred there. I did then have a series of bladder infections some of which were quit painful. That was before prostate surgery and eventually they become a thing of the past.

However for the past two years I have had discomfort on and off. I have managed it first by modifying my diet. I eliminated anything acidic plus a number of other things and now take a drug called Prosed D/S. The drug does help to some extent but not all that much. I feel that there is an underlying progressive condition here so anything I do only works for a modest length of time after which it fails which is where I am now. My urologist who I will see again soon. (This week if I can manage it.) has little idea what he can do for me but to begin with I want a pain med as I have constant discomfort now and serious sleep problems.

In any case I am looking for ideas and hope this is a good forum to find such.

Please help :>(....

[crystilclear]

Welcome! Have you been officially diagnosed with IC? The diet is a good place to start. If you are looking for info there is tons in the patient handbook. I'm on Elmiron (which helps to coat your bladder but may take awhile to work), Nulev (which helps with urgency and frequency), and amitripiline (which helps block pain and helps me to sleep). I also have very bad pains in my pelvic area and lower back. A heating pad, Therma care makes them too. Also prelief helps to take away some acidity from the foods you eat if you take them before you eat with acidic foods. I hope this helped. I have had vicodin for pain. Sometimes it is hard to get doctors to perscribe pain meds. I'm still struggling to get the pain under control. Find a good doctor and stick with them. Good luck and I hope you will be feeling better soon.

[Sarojini]

Hi Marty,

What treatments have you had to combat your prostate cancer? Sometimes cancer treatments can produce a cystitis... some chemotherapy drugs can produce chemical cystitis that is quite severe, even hemorrhagic. Cytoxan (cyclophosphamide) is one of the worst offenders, and I'm not sure they use that in prostate treatment.... but there are others that can irritate the bladder as well.

Also, have you had radiation treatments, either external beam therapy or radioactive seed implantation? Medical physicists are pretty good at doing dose distributions these days, but since the prostate is so close to the bladder and urethra, there is often some radiation-induced damage in these organs. This could contribute to your problems as well.

Other than that, has your uro done a cystoscopy or anything?

Definitely discuss your discomfort with your uro... regardless of the cause, your pain must be addressed!!

[Marty S.]

I want to thank Crystalclear and Sarojini for their thoughtful replies.
Here is where I am at the moment:
My original treatment for the cancer was surgery. I never had radiation to the area actually though I did have some not far away this past March. The problem preceded that however.
The current med Ketoconazole is probably the culprit.

There are numerous problems here. To start with the Keto needs acid to be absorbed so antacids are out.
I saw my local urologist today but he is out of his area and really does not know what to do. He did prescribe Elmiron as he has heard of that and checked for interaction with the Keto but that will bring another set of difficulties. in that it is supposed to be taken with a glass of water away from food for proper absorption like the Keto. Its just that the Keto is not supposed to be taken with much water or perhaps with an acidic drink like cola or orange juice just what I do not need for my bladder.

I made an appointment with a Dr. Moldwin at Long Island Jewish Med Center who is an expert on IC but that will not be until August.
For now I am a bit adrift. The urologist had nothing so suggest so I need to find some one else or something else for now.
The list of potential drugs on one of these web sites was considerable but how to get treated by someone who knows what they are doing is a problem.

Now understand I have not been clearly diagnosed with IC and a proper visual inspection of the bladder has not been done however I will need someone who knows more to do this.

If anyone out there lives on Long Island, New York and has good experience with a local urologist I would like to hear from them as I need to get control of this or my quality of life will go to hell. Sleep deprivation is no fun really as I am sure you know.

Marty S.

[Sarojini]

Hi again, Marty,

Well, I'm not on Long Island, however, I do know of Dr. Moldwin... he is supposed to be one of the best IC docs in the world today. He wrote the book The Interstitial Cystitis Survival Guide, which is available through this website at http://www.ic-network.com/shop .

You may want to read that book before your August appointment, because it will give you a good idea about Dr. Moldwin's opinions and ideas about IC. Also, when you know that, you can formulate your questions for him!

Ok, so... that is interesting that ketoconazole need acid for proper absorption. What they are using the ketoconazole for is "androgen ablation" -- this means that your prostate cancer cells are somewhat dependent on your male hormones, particularly testosterone, to grow. The theory is that since ketoconazole inhibits testosterone production by something like 80% after taking it, it will reduce the testosterone available to the cancer cells and this will slow their growth.

Be aware that there are other methods of suppressing testosterone production-- they may be "weird" to you though. They include administration of low doses of estrogen...sometimes by injecting a female hormone cocktail called Lupron. However, these may not affect your IC as much... my point is that there are OTHER OPTIONS OUT THERE THAT WILL PRODUCE RESULTS, so you need to talk to your uro about them. Perhaps your current uro and Dr. Moldwin can work together to produce a treatment plan that works much better for you!! :)

If you want to chat, please send me a private message, or email me at jen424@earthlink.net. I am a cancer biologist by training and have done some work on prostate cancer in the past... I can help you research options if you like, and I also have some contacts in the prostate field that may be of use.