rcgabriel
08-30-2004, 04:59 AM
I wanted to share this story here because my mother has wanted to share it for the last several years, but is no longer able to do so herself as she is too ill and currently hospitalized (nothing to do with the IC, she has colon cancer that she's been battling for the last 4 years).
My mother suffered from IC starting in her early 20s. Don't remember the exact story of its onset, but she had a number of problems at the time, several bladder infections, then a severe reaction to a intrauterine birth control device (which they believed had left her infertile - guess not, since she gave birth to me when she was 30).
In any case, she suffered for years with IC, saw some of the best urologists in Florida when I was a kid. She tried DMSO infusions for a while, which provided some minor relief - her symptoms were mostly urgency and frequency, and sometimes pain or discomfort from a flareup, but not the constant agonizing pain that some people seem to report. Through most of my life though, she just dealt with it, since there didn't seem to be many options (doctors offered her the radical surgery options, some sort of nerve cutting procedure that would leave her with minimal bladder control and so on, but the side effects all seemed more severe than the disease in her case). By strange irony, she was working as an executive at IVAX when they were working on Elmiron, so she was one of the first to get it. It provided some relief, though she was never sure how great it really was (she seemed to feel like things got worse whenever she stopped taking it however, so she stuck with it).
Almost 4 years ago, my mother with late stage colon cancer. Things looked very bleak. In any case, we found the topmost aggressive GI surgical oncologist in the country down in Washington DC (Dr. Paul Sugarbaker) and he was able to help when nobody else would, even at all the supposedly great hospitals up here in New York City. In any case, after surgery, my mother began chemotherapy with 5-fluourouracil, leucovorin calcium, and irinotecan (the Saltz regimen, for 9 months). In any case, she noticed that she had stopped taking the Elmiron (I think she was just too sick when she started the chemo and was popping enough pills that she didn't even notice the usual bladder issues), but the bladder pain and discomfort and urgency had all greatly abated.
Even during the chemotherapy, she noticed that she was actually able to sleep through a night only getting up once or sometimes twice to go to the bathroom, whereas usually she would have had maybe 6 or 7 bathroom trips. After the end of the chemo regimen, her symptoms more or less stayed gone, or at least reduced to the point that it wasn't much of an issue.
Since then (and that was about 2 and a half years ago now), I've never really heard her complain about the IC - by her own description, the chemo cured her of it. And she's said many times now that she wanted to share that experience with somebody. She has told her doctors, but I don't think any of them were terribly interested in IC or considered it a genuine correlation - in any case, as you can imagine with all the doctors she's been dealing with, going to see a urologist when she feels the absence of pain in her bladder is not high on her priority list.
Things aren't going terribly well for her right now, as the cancer has come back and is now in a location (on her bile duct) and of a size that is non-resectable (they attempted, but aborted the surgical procedure). She's back in the hospital now with a serious infection that they have mostly under control after almost three weeks of vancomycin and a cocktail of other antibiotics, and has just started chemo a couple of days ago. Hopefully she'll respond to the chemotherapy regimen she's on now.
Regardless of all that, she and I just wanted to share her IC experience with people who would surely be interested. I would love to see if anybody else has had or has knowledge of anybody who's had similar experiences, or has undergone chemotherapy and had no change at all in their IC. It's certainly possible that there is something else at work here than the chemo, and this is just one anecdotal experience. But enough anecdotal experiences taken together might justify further investigation.
My mother suffered from IC starting in her early 20s. Don't remember the exact story of its onset, but she had a number of problems at the time, several bladder infections, then a severe reaction to a intrauterine birth control device (which they believed had left her infertile - guess not, since she gave birth to me when she was 30).
In any case, she suffered for years with IC, saw some of the best urologists in Florida when I was a kid. She tried DMSO infusions for a while, which provided some minor relief - her symptoms were mostly urgency and frequency, and sometimes pain or discomfort from a flareup, but not the constant agonizing pain that some people seem to report. Through most of my life though, she just dealt with it, since there didn't seem to be many options (doctors offered her the radical surgery options, some sort of nerve cutting procedure that would leave her with minimal bladder control and so on, but the side effects all seemed more severe than the disease in her case). By strange irony, she was working as an executive at IVAX when they were working on Elmiron, so she was one of the first to get it. It provided some relief, though she was never sure how great it really was (she seemed to feel like things got worse whenever she stopped taking it however, so she stuck with it).
Almost 4 years ago, my mother with late stage colon cancer. Things looked very bleak. In any case, we found the topmost aggressive GI surgical oncologist in the country down in Washington DC (Dr. Paul Sugarbaker) and he was able to help when nobody else would, even at all the supposedly great hospitals up here in New York City. In any case, after surgery, my mother began chemotherapy with 5-fluourouracil, leucovorin calcium, and irinotecan (the Saltz regimen, for 9 months). In any case, she noticed that she had stopped taking the Elmiron (I think she was just too sick when she started the chemo and was popping enough pills that she didn't even notice the usual bladder issues), but the bladder pain and discomfort and urgency had all greatly abated.
Even during the chemotherapy, she noticed that she was actually able to sleep through a night only getting up once or sometimes twice to go to the bathroom, whereas usually she would have had maybe 6 or 7 bathroom trips. After the end of the chemo regimen, her symptoms more or less stayed gone, or at least reduced to the point that it wasn't much of an issue.
Since then (and that was about 2 and a half years ago now), I've never really heard her complain about the IC - by her own description, the chemo cured her of it. And she's said many times now that she wanted to share that experience with somebody. She has told her doctors, but I don't think any of them were terribly interested in IC or considered it a genuine correlation - in any case, as you can imagine with all the doctors she's been dealing with, going to see a urologist when she feels the absence of pain in her bladder is not high on her priority list.
Things aren't going terribly well for her right now, as the cancer has come back and is now in a location (on her bile duct) and of a size that is non-resectable (they attempted, but aborted the surgical procedure). She's back in the hospital now with a serious infection that they have mostly under control after almost three weeks of vancomycin and a cocktail of other antibiotics, and has just started chemo a couple of days ago. Hopefully she'll respond to the chemotherapy regimen she's on now.
Regardless of all that, she and I just wanted to share her IC experience with people who would surely be interested. I would love to see if anybody else has had or has knowledge of anybody who's had similar experiences, or has undergone chemotherapy and had no change at all in their IC. It's certainly possible that there is something else at work here than the chemo, and this is just one anecdotal experience. But enough anecdotal experiences taken together might justify further investigation.