Info. re: cytoxan....

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Date Joined Jul 2003
Total Posts : 892
   Posted 1/18/2005 9:39 PM (GMT -7)   
First, thank you all for your posts.  I don't know what I'd do w/out your encouragement and support.
DH called the urologist in NY this morning and I did get an appt.  Then the dr. called me this afternoon and asked all kinds of ???'s re: the type of chemotherapy and subsequent drug therapy I'd had since DX.  Here's his take.  Cytoxan which was the first in my 3 drug cocktail has been proven to irritate the bladder even years after chemotherapy is complete.  He says he's had a number of patients, male and female, who have symptoms similar to mine.  Okay, so that was somewhat reassuring.  Then he asked for the CT scan x-rays on a disk (I called the imaging place as soon as I got off the phone and it'll be ready tomorrow) which I need to send him in NY so he can look at the x-rays and read the whole file.  He called it "putting another pair of eyes on it."
Here's the not so good news.  I DO need to have the cystoscope thing done.  He says it's the last step in the eval. procedure.  I'm having it done on Feb. 1 in his office.  How fun, NOT!  But at least I know him already and I don't have to start all over with another new dr. Yikes, what a way to spend my wedding anniversary, huh?
So that's the latest from here.  Your posts helped a lot.  I was thinking maybe I'd been too blunt in the dr's office because I was tired and cranky.  But I keep thinking maybe, just maybe one of these people will pay attention and start treating patients more respectfully.  I can only hope.  L&H's, Luci 
In the depth of winter, I finally learned that within me lay an invincible summer.  Albert Camus

Veteran Member

Date Joined Jul 2003
Total Posts : 1106
   Posted 1/19/2005 1:01 AM (GMT -7)   
Oh luci, I am glad you are going to be able to see the Dr you know and trust. The comments do sound reassuring and that is good! Hang in there hon. I agree, maybe now at least one patient will be treated better, and that makes it worth it! L&H, Gail
 It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.   Elisabeth Kubler Ross

Regular Member

Date Joined Jul 2003
Total Posts : 200
   Posted 1/19/2005 4:24 AM (GMT -7)   
Dear, dear Luci,

I had the "cystoscope thing" done a couple of years ago. During the same time I also had a CT of the kidneys and bladder. I had a little blood in my urine and was also urinating more frequently - hence all the tests! The cystoscope wasn't so bad, and it was reassuring to know there was no bladder cancer. So - o, after all these things, the answer was that I was suffering from an irritated bladder. They could see that it was somewhat inflammed by the cystoscope. The reason for the irritated bladder was our friend chemotherapy - surprise. I think I mentioned !!! that to them from the get-go.

I was very uninformed at the beginning of my chemo treatment and didn't drink a lot of water to flush everything (wasn't told to either). So, hope this helps some on the board who are just beginning their therapy to drink, drink, drink. It might have happened even with the flushing procedure, so they told me, but I'll bet dollars to donuts that the flushing out will help a lot.

I'll be keeping you in my thoughts, as always.

Love, Glenda

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Date Joined Jul 2003
Total Posts : 2921
   Posted 1/19/2005 6:17 AM (GMT -7)   
I learn something new everyday on this board. I do hope the newer members that are going thru chemo see this and realize they need to drink and flush...... Your dr in NY sounds like he is a really good dr and is working on your file before you even get there. Anniversary present, eh? LOL. As I was reading your lament that perhaps you were a little cranky and hasty, I was thinking, "No Luci, you just had the guts that I never had!" I have felt the same way several times over the years and wanted to do just what you did, but I didn't have the moxie. LOL You are quite the lady, Miss Luci. Hugs MK

Veteran Member

Date Joined Jul 2003
Total Posts : 700
   Posted 1/19/2005 8:56 AM (GMT -7)   
Luci, I am glad your doc in NY is on the ball and taking care of things. I hope you can find one in your new home that you can trust and feel comfortable with in time. I agree with MK totally! You did what I would have loved to do several times. I did finally change OB/GYN because of the waiting, and changed my Onc because of that. My time is just as important as theirs and I am usually trying to do those things on a lunch hour. I will be there with you and you are in my prayers.

Love ya
Sara Dearing
Today is a gift, that's why they call it the present!

Veteran Member

Date Joined Jul 2003
Total Posts : 955
   Posted 1/25/2005 5:24 PM (GMT -7)   
This board never ceases to amaze me. I also, find out things by coming here that I wouldn't know otherwise.

Luci, I too have had bladder problems for probably 5 years. I have taken a maintenance antibiotic for years because of some blood in the urine that they can't really explain why I am having. I had the cystoscopy and it really wasn't that bad, and believe me........I WAS SCARED TOO DEATH to have it done.   My urologist was so nice and kept talking to me during the procedure. Actually, was kind of interesting to see what the inside of my bladder looked like. He had the screen positioned so that I could view it too. There was the usual CT scans of the bladder and kidneys to rule out stones or anything else.  There has never been any mention of chemo (i took cytoxan too) maybe being the culprit after all of these years, but now I am really wondering about it.

Thanks girls, for being so information.

Luci, good luck to you on Feb.1. You will do just fine.


"What sweetness is left in life if you take away friendship? It is like robbing the world of the sun"

Post Edited (cupycake2) : 1/25/2005 5:28:24 PM (GMT-7)

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