1st week of chemo

Hi everyone,

I have been quiet a while, thought I should update...

Started my 3rd month of chemo this week - Needed procrit just to start it again. Been dealing with hair and hearing loss bigtime, and my hands and feet are really messed up, can hardly walk. I go to Mayo's July 5th and 6th for check ups/tests. Mayo's pathology says I also have belly button (urachural cancer). That has freaked me out as there is not much info out there.

I haven't been hospitalized in the last 2 1/2 weeks so that is good. I am trying to keep my spirits up - it is just tough right now, Holly

just a P.S. on Lindas doctor...just what kind of urine test does he run that none of these other doctors know about? Certainly a blood test will show infection......but tell me more about this urine test. Pat

Hi Holly........Geez!!.....unfortunately i don't believe they have any standardized tests for urine analysis on someone who has a bowel for a bladder...they can't agree on PH factors or anything....and the fact that you have all that muucus makes the tests they do have go haywire. I've never even had a urinalysis as they said they wouldn't be able to make heads or tails out of it!!! But the fact that you are symptomatic now with a fever does mean you need an antibiotic. I guess they figured the vancomycin worked before so they're using it again. Thats such a hard line drug but hey who am i to question it. Eat your yogart...keep the good bacteria in there. And drink lots of water with the vancomycin and lots of water during the day. Did they teach you to self-cath while back in the hospital? I have a feeling that residual urine is causing the trouble. Every once in a while i get a foul smelling urine output but i immediately go on a lesser broad spectrum antibiotic..Keflex...which knocks it out in one day. Its usually because i've gone to long without emptying...my bladder tends to leave me alone at night and i don't wake up to empty as i should...but the sleep feels so good!!!.....Hang in there Holly... Pat

Holly, yes, I've been reading many studies coming out of Sweden from a specialist, and he says that neobladders will contain a certain amount of bacteria, but that it is not a problem until it's an problem...here's a post from a friend, Linda Weyand, who has been there:
"My primary care doctor lets me bring in a urine specimen and wait for the
results so I can leave with the prescription in hand. Most doctor
offices can run a urine test for infection right in their office. If
your father does not have a doctor that he can have do a urine test
tomorrow, is there an urgent care type facility in his area? Smelly,
cloudy urine is generally a sure sign of a urinary tract infection, and
he really should not wait until Monday to start antibiotic treatment.
Often either Cipro or levaquin is prescribed for these urinary tract
infections. Both of these are 2nd generation quinolone broad-spectrum
antibiotics. The cloudy, smelly urine is also a sign that the infection
is caused by E.coli, a common cause of urinary tract infections.

my instructions were to call the doctor if I had
chills or temperature greater than 101 degrees. I tend to go from no
fever to 103-104 degrees in nothing flat. Having had sepsis on at least
3 different occasions, I now try to catch the infection before they can
cause those symptoms. I look for the cloudy smelly urine anytime I start
feeling not so good without any specific complaint. Whenever I detect
the cloudy and/or smelly urine, then I get my urine tested immediately.
Doing this has kept me without any serious infections for 2 years (now,
I am going to knock on wood in hopes that I have not jinxed myself).

Hello all,

  Well the 1st week of the 2nd run with chemo turned a bit rougher than I expected...Iwas laid out flat for 4 days. Then got a few bags of fluid and more anti puke stuff in my port. Thought I'd get thru it... Well, then my urine was so rank  and Mayo's said to get a urine test....which showed positive for bacteria. Dr here prescribed Bactrim. So I called Mayo's back to be sure I should. Mayo's told me no...Anyone with a neobladder will have bacteia in the urine but it should only be treated if there is fever and back pain with it. They also wanted me to learn how to self cath asap. 3;15 on Friday of a holiday weekend - yeah right. So I planned for Tuesday morning to get into urologist. Then I ran temps of 102 - 103 + and was admitted to the hospitol. Just got home a few hours ago. On levaquin - terrified of a 3rd c diff episode. Oh, and I was given my chemo too ( gemzar only)before I was released home. Physically and mentally I feel blitzed. I am going to Mayo's in less than 2 weeks.  I need to tend to some healing time here and get my chemo brain collected before I have another problem....But I was wondering for all you RC folks - have you been informed about always having bacteria in your new bladders and pouches and to only have treatment for it if symtomatic?

   Time to rest now, I am alive just looking to find my kickin again, Love you, Holly
PS I have been in closer contact with Mayo's than I thought I would need to be. But since they did my scans here locally, then admitted they are not sure of what is my "neobladder" vs intestines....I been asking a hell of a lot more questions of Mayo's. When I go back to Mayo's for check up - I will return with disc, pics and whatever is nessessary to get them to communicate better.

  And Rosemary, bless you, I am not weeping, or usually unable to sleep. People just freak out that I am point blank of what is and isn't worthy of my precious time. I think they are uncomfy - but I feel fortunate to have the choices. Once in a while something throws me. Like a friend becoming a Grandma ... I am happy for her but feel the sting my son hasn't even married yet. I get over it quick enough I think. I had simply taken for granted I would be a Nana someday. I still hope I will, I just don't take it for granted anymore.Love ya, Hope you are feeling better too.

Holly,

Like you, for many many years, I've managed to avoid taking any and all medications. But somehow, all this avoidance has not protected me from bladder cancer.

My point is this.... If you are having trouble sleeping, or if you are crying a lot, do not feel bad about taking an antidepressant.  You do not sound depressed to me, but I can't help but wonder why everyone else thinks that you are.  You are extremely strong, but you have a lot to hold together right now and if you need some help, then take the meds, please.

You are very much in my thoughts right now.

Your friend always,
Rosemary