Bladder problem caused by cytoxan

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Luci
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Date Joined Jul 2003
Total Posts : 892
   Posted 2/4/2005 8:46 AM (GMT -7)   
yeah  I'm back in NV now and feeling pretty good.  The cystoscope was pretty uncomfortable; the best I can say is "it's over."  So here's the results.
 
There is extensive scarring (sp?) in the bladder caused by cytoxan exactly as the dr. thought.  The scar tissue is pretty tough and doesn't allow the bladder to expand properly.  That means it's in a constant of irritation.  The WBC's flood the bladder because they think there's an infection.  Bottom line, there's no cure, just another pill, which I've already started taking.  What's one more pill added to the others I already take, right???
 
The dr. gave me a scrip to have some add'l testing done out here in NV.  The results will go directly to him in NY.  Then I need to see him in the summer just to check things out.  DH will be due for another prostate bx in the summer so we'll probably go together.  Yikes, talk about togetherness, now we share a urologist and can have side by side appts. I guess we'll go on a date to the urologist first, then out for dinner and drinks.  Too funny, huh!!!  
 
Mentally, I'm happy there's an answer for all of this physical discomfort.  Once again, I'm reminded the BC is the "gift that just keeps on giving."  Hugs from here, Luci
 
PS-While I was away the dr. with whom I had that disagreement about waiting in late Jan left 4 (four) messages on our machine wanting to know if I had reconsidered having the cystoscope and to please call him back. Can't figure out what's up with that.  I wasn't planning on seeing him ever again, do you think I need to reconsider??? Appreciate your imput; you always give me good advice.
 
 


MNlady13
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Date Joined Jul 2003
Total Posts : 2044
   Posted 2/4/2005 11:05 AM (GMT -7)   

Luci, glad to see you survived the proceedure with your sense of humor intact. I think it is too funny that you and Barry see the same doctor. Do you suppose he would offer a family discount? Or, is this an extension of the "family that plays together, stays together?"

As for planning to see the NV doctor again, I really don't know. It seems a stretch to think that you are going to continue flying back to NY to see the urologist on a regular basis. Glad to hear the testing is over and you are all right. Hugs, Lauri


"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
 
Life is not measured by the number of breaths we take, but by the moments that take our breath away.


postal2
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Date Joined Jul 2003
Total Posts : 1106
   Posted 2/4/2005 12:03 PM (GMT -7)   
So good to hear you are ok, Luci. It seems we can handle just about anything if we know what it is. As for the Dr, you will have to think about that one. I guess it would be a stretch, as Lauri said, to figure on going back and forth to NY all the time. The fact he called four times is something, I think. Not all of them would have done that. Hmmm, it's your decision. Go with what your gut is telling you. (no pun intended) LOL. Love you Miss Luci, 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


gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 2/4/2005 4:50 PM (GMT -7)   
Glad you are home safely and I am surprised to hear the results of your cystoscopy. Honestly, BC does keep giving and giving, doesn't it? I never would have guessed that could have happened. I have known two women who had bladder cancer and in their case they filled the bladder with chemo and then let it back out after a time. Think of the scarring????

As for your phone calling dr there in NV. Lauri and Gail have points for sure. Sometimes when you let people know how you feel you end up with a better relationship than if you just walked away. I think he got your message and is trying to make amends.

Take care and enjoy that sunshine again.

Love Mk


cupycake2
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Date Joined Jul 2003
Total Posts : 955
   Posted 2/4/2005 9:35 PM (GMT -7)   
Dear Luci,

Sorry to hear that the cystoscopy was uncomfortable for you. (and I had told you it wouldn't be that bad, SORRY) Actually, maybe it has something to do with the doctor who performs the procedure. Like I said, my urologist was so great about trying to talk and keep my mind off of it and put me at ease.

I was curious as to what medication your doctor has ordered for you. I have taken a maintenance antibiotic now for a few years and I was just to him the other day and he wants me to continue with it (not sure when and IF I will ever be able to be off of it either) . I am taking 1 tablet of Methenamine Mandelate every day along with a vitamin C tablet. Have to take the vitamin C because there is something in the Methenamine that breaks down the vitamin C in your body.

I think I would consider finding another urologist in NV, since this sounds like it is going to be an ongoing thing for you. Especially since you do not have a whole lot of faith in the one that you have been seeing. It might ease your mind at any rate, as with BC, half the battle is having faith in your doctor.

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


coopfesta
Veteran Member


Date Joined Sep 2003
Total Posts : 1373
   Posted 2/4/2005 10:04 PM (GMT -7)   
Luci:
 
I, too, am glad you have a sence of humor left.  I hate hate hate urologists.  They want to do such terrible things!!!!!
 
I don't remember what the problem was with him, I was pretty occupied when you went through it with him, I think.  All of a sudden you were in NY!!!   I can't help but think about how unusual it is for a doc to call four times like that.  He's insecure about something.  It's a test he really wanted you to have?  I think a talk with him and maybe a second opinion from someone there, too.  Why not do it all?  You can never be too sure.  Just keep records so the docs have the info and you don't have to go through too much uncomfortablility
"Our greatest glory is not in never falling, but in rising every time we fall." -Confucius

Ellen


Candy
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Date Joined Jul 2003
Total Posts : 1294
   Posted 2/5/2005 6:00 AM (GMT -7)   

Luci,

Glad you got some answers.  AND a new pill.  Yea!! Whatever, right?

If you need a urologist in NV, find a new one!!  Sounds like the former one had some problems or his staff did.  Either one necessitates a new search.  Good Luck.

Love and prayers,

Candy

 



Many Blessings for the New Year

 

 

Life may not be the party

 we hoped for,

but while we are here we might as

well dance.
   


Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 2/5/2005 6:51 AM (GMT -7)   
Hi Luci!
Glad there isn't anything serious going on. If DH has to go back to NY for regular visits anyway, then staying with the NY doc is ok for now. The problem is if anything serious develops, then you have to stay in NY or scramble to find someone in LV. Did the LV doc leave the phone messages himself or was it his office staff? If it was him, then I would guess he was trying to make ammends. My DH genuinely feels bad when patients have to wait a long time for an appointment, but sometimes unforseen things happen that can really throw a schedule off. We always let the patients know if there is going to be a delay so that the patient can decide if they want to reschedule. If it was the office staff that called, then he was just CHA (covering his a**) to document that they tried to reach you about having that test! Either way, you got off on the wrong foot with this office. If you really like this doc, then you have to look past the office staff. Otherwise, you are best getting a fresh start with someone new. L&H, Frayda

Tavish
Veteran Member


Date Joined Jul 2003
Total Posts : 2272
   Posted 2/5/2005 7:57 AM (GMT -7)   
Hooray for scarring! Well not really, but you know what I mean, hooray it is not some other bad condition. I agree with Frayda, keeping the NY doc is fine, but getting a local provider may not be a bad idea. Just in case, you want someone who knows you and is familiar with your background.

As for long waits, I do not have a problem with waiting, knowing that a doc is spending more time with someone who needs it or because they squeezed a few emergencies in. When I need more time or have an emergency, I expect the same special treatment. What I do have a problem with is when you sit for a long time and no one comes to say anything. More than once, I have been pacing the hall at my breast clinic just to make sure someone knows I am there. If they would just come in and say the doc is running late, etc, it would make the experience so much nicer.

Warm hugs to you back in NV-
Lori


kmonke
Regular Member


Date Joined Jul 2003
Total Posts : 352
   Posted 2/6/2005 7:39 PM (GMT -7)   

Is this test the only "scope" a urologist would do?  I am to go to Bismarck next week for kidney and bladder x-rays and a "scope" - that was all he called it.  All I know is I have to have a liquid diet the day before and take laxatives in the evening before to be "cleaned out."

WHAT AM I GETTING INTO?  Have had recurrent bladder infections since September (3 to be exact) so my PC doc referred me on.  When I saw the specialist this past week he asked me a few questions, looked at my chart and said he wanted me in Bismarck for these tests.

Someone please let me know what I am in for.  Thanks - you are the greatest.

Love ya,

Kitty


Luci
Veteran Member


Date Joined Jul 2003
Total Posts : 892
   Posted 2/7/2005 8:17 PM (GMT -7)   
Kitty, the procedure you described above sounds like preparation for a colonoscopy rather than a cystoscope. Urologists only do "cystoscopes", gastroenterologists do "colonoscopies." Maybe you should give your dr. a call and have him clarify the tests you're going to have. If you've never had a colonscopy, the preparation is pretty rigorous. There is NO preparation for a cystoscope because it's done under a local anesthetic. I'm thinking if you're having recurrent UTI's that the urologist is the type of dr. you need to see now. Hope this helps. Good luck and keep us informed. Hugs, Luci
In the depth of winter, I finally learned that within me lay an invincible summer.  Albert Camus


kmonke
Regular Member


Date Joined Jul 2003
Total Posts : 352
   Posted 2/7/2005 9:48 PM (GMT -7)   

Luci,

Thanks for the info.  It is a urologist I am seeing.  I've had colonoscopies done and what they are telling me to do is nothing like what I had for that.  The nurse just said she would suggest sticking pretty much to liquids the day before and to take a laxative (like Milk of Mag) the night before.  I asked if I had to be cleaned out like for a colonoscopy and she said "OH NO".

You say they do it under a local anesthetics.  Maybe that is why she said nothing to eat or drink after midnight.  I think I will call down there this week.....just so I am prepared. YUCK!

Love, Kitty


grandmaro
Regular Member


Date Joined Aug 2003
Total Posts : 106
   Posted 2/7/2005 11:51 PM (GMT -7)   
Luci,
I've sent you a few E-mails but don't know if you got them. I'm glad you found out what the problem is. What is the medication you are on? I really think I have a similar problem and would love to hear from you.
Hugs,
Rozanne

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