Aggressive Bladder Cancer: Tips to help hold meds in bladder?

@sirich What you have said makes alot of sense to me. I have just had my second of monthly maintenance doses of Gem/Doc, having previously had 6 weekly doses.
This one was the worse one. The nurse was training another nurse and didn’t seem as focused on me as usual and I felt most uncomfortable throughout the whole process, and had a terrible time holding it in for the 90mins.
I always have the same nurse and I will ask her why it would have been so bad the last time when I go for my next monthly procedure.

I just completed one treatment a week for six weeks. We live 1/2 hr away from the James outpatient facility. I was able to hold it in for the first four infusions. The last two treatments were a little less than an hour. What a mess.

I have scope December 17 and am hoping all is okay.

Welcome, @linda0234. Oh, the indignities of treatment! I'm sure the treatment nurses assured you that all was okay. You held it for as long as possible and close to an hour is what you were able to do. I'm sure you're anxious to see the results of the scope in a few weeks.

Linda, what type of bladder cancer do you have? How are you doing?

@linda0234
My last of the weekly doses is this upcoming week. Each time has been a little worse than the last. Barely made it to 50 minutes! I believe the cumulative effects make each dose a little harder. I’ll be SO glad after this next session and then I have a break until mid-January when I’ll have a cystoscopy.
I honestly don’t think I can do the next protocol of maintenance chemo, but will have to wait and see.
I certainly hope that your scope in a few weeks shows good results!!! Please let us know.

@ksmcandle thank you. I too am hoping to not have to go through anymore of those urethra infusions. It’s awful in particular when it takes three tries to put catheter in the correct place.
Keep me posted on your cystoscope results.

@ksmcandle yes I have to agree. Each treatment is worse than the one the week before. The last two I could not make it one hour. I am hopeful your cystoscope results show a clean bladder. Mine is December 17 . Thinking of you.

It seems as though we are all having similar issues with holding the meds in. Each time is more difficult. We are all strong and at least we are not alone. I hope the remainder of your treatments go well.

@deb2024 i share similar side effects. Wishing you luck with your treatments. Hope all goes well Deb.

I am receiving treatment within my bladder as well. I have gemcitibine for 1 1/2 hours, with the catheter still in. Then, they drain the bladder and instill the docetaxyl and send me home. I make sure I know the exact time it is instilled, so I can release it as soon as it has been in for 90 minutes.

What I do to help myself is geared toward having my brain create endorphins. Those are your natural pain killers.

For me, it is watching a happy movie. Not only does it make time pass faster, but it creates those natural painkillers.

Here is what else I have tried to make myself more comfortable. First of all, be sure to take the bicarbonate of soda. At first, the instructions were to take it the night before and the morning of, but it has changed to five days prior, twice per day. The increased dosage of that seems to help. You can also get it from Amazon if your doctor didn't prescribe enough. My prescription has the new instructions, but the quantity didn't change. Amazon was cheaper anyway.

The size of the catheter turned out to be important. I need a very small size and they had to order one, so at first, it was more uncomfortable than it needed to be. Be sure you don't have a size too big - if it hurts just from having the catheter in, ask about that. It is for your comfort, not for their convenience. Mine took a month to arrive, but now they have a supply for me. (I am now in once/month for a year, after completing the six weekly treatments).

Also, if you can stand being thirsty, you might find that limiting liquids for 12 hours or so prior to the treatment means less urine adding itself to your bladder while you are holding in the treatment. I find it helps, but isn't always worth it to feel thirsty. Personal choice...

Other cozy things that help my brain to release endorphins are cozy socks and a really fluffy 'blanket' in place of the doctor's office paper sheet! A chemo-survivor friend gave me a care package of hard candies, chocolates and a crossword puzzle book. I don't try to work puzzles - I would rather sit back and be entertained by a movie.

I take along my iPad and have movies that are happy downloaded. I watch a movie the entire time I am there. I am released after the first drug is drained and the second one is installed.

I drive carefully. Fortunately there are no bumpy roads. Then I finish out the rest of the 90 minutes of the second dose on my sofa while I finish watching the movie. I then turn on the TV - I also set an alarm when I get into my house and as soon as it goes off, I am headed to the restroom to release the chemo.

It is usually awhile before I get any side effects like a headache, and often I fall asleep for quite awhile.

I wait until the headache appears before I take some excedrine, which gets rid of it and it doesn't come back.

Just try things rather than putting up with status quo. Be inventive. Most of all, be patient with yourself. Listen to your body and try things that you feel will provide comfort. We are each different.

@deb2024

I am so glad your cancer has not returned!