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

@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.

Hi, I also have taken the gem/doc treatments for NMIBC HG. I’ve had 15 treatments so far. I have to hold the gem for 90 minutes and the doc for 2 hours. Side effects varied at times. So far I haven’t had any new tumors. I deal with exhaustion but still am able to do a normal routine. The treatment burns and I causes muscle spasms and I sleep a lot after each treatment. I hope you do well on these treatments and that you have a very supportive spouse. Best to you!

@sirich
Hi,
I am not exactly sure but I find that depending on the nurse that does the
Treatment makes a difference. I think if the inserted balloon is perhaps just in the right spot he can hold the gem for at least an hour. They put a clamp on the tube also to help it from flowing out. With some nurses i can tell by my husbands face he feels nothing with other nurses he cringes. Some are slow and careful some are a little faster. He was able to hold in the bcg with no problem because it is a lesser amount.
Do they clamp off the tube for you?
Not sure it will help but worth a shot.

I have been told not to drink anything apart from sips for medications for at least 6 hours before the procedure and don't urinate immediately before catheter insertion because they only know when the catheter is far enough inserted when urine begins to flow.
The night before, the morning before and immediately prior to treatment I take 2 X 650 mg sodium bicarbonate tablets which are supposed to improve the effectiveness of the chemo in an alkaline environment, plus it reduces irritation from the chemo.

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.

@linda0234 I went through 6 weeks of gemdoce and then 10 months of monthly infusions, followed by cystoscopies every 3 months for a year. All clear following initial TURBT until very last cysto which looked all clear, but cytology came back positive. Blue light surgery showed new cancer (CIS). So I began a clinical trial. Also infusions, but immunotherapy. Cancer came back again so I am about to start CBG treatments. I had, and am sure I will have, the same issues during the infusions - severe bladder spasms. Eventually, with the surgeon's blessing, I figured out that Valium and a Cunningham clamp got me through the procedures. During the chemo, I would take a 5 mg before the infusion and then chew another one about 20 minutes into the therapy. I still had some spasms, but far less and with the clamp on, I was able to gut it out and keep the drug in. For the clinical trial infusions, they gave me rectal Valium before the infusion and then I chewed a 5 mg Valium about fifteen minutes into the hour. Also put the clamp on. Luckily each tx was only an hour and with the new regimen, I only had slight spasms that didn't last long. During both the chemo and the immunotherapy, I had no side effects after the procedures and was able to go out, play golf, whatever. I'm hoping the BCG infusions will have little or no side effects. Surgeon said we will continue to go with the Valium. The clamp looks like a torture device, but trust me, if you begin to have a spasm and you have the clamp tight enough, you can actually force yourself to relax knowing you can keep it in and not blow it out past the catheter. It's not a fun process. I thought I had beat it, being clean for 2 years, but it's a highly recurrent cancer. I'm not ready for bladder removal/reconstruction yet, so I'll go with the next chapter.

@dmr44
Hi,
My husband had gem treatments
They really didn’t do much for him.
He got BCG and after the 6 weeks he had 1 small tumor and 2 tiny ones that were burned away.
The BCG got rid of the cancer in situ.
The dr wants him to continue with gem after his last turbt. That being said i wanted him to continue on a maintenance of BCG however because of the shortage he is not eligable. Because he dosnt have carcinoma in situ. But the reason he dosnt is because of the bcg .dr seemed to get annoyed that I kept asking for it. He said the gem is the 2nd best i as anybody would want the best not the 2nd best. Anyway I bet the BCG will help you
And I wish you much luck with it.
Side effects were some bleeding 1st day and fatigue.
With the gem there was bleeding, fatigue and loss of appetite.

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.

@jimg56 So he had gem and then BCG and now back to gem? It's good that the cancer in situ is gone as I understand it's very stubborn. As to which is best, there are studies which do show that the gem/doce protocol is virtually as good as the BCG. I will be getting half doses of BCG, which I assume your husband got. Studies also show that to be very effective as well. Interestingly, the French (I think it was them) have developed a new mrnaBCG formula which is supposed to be even more effective and will be manufactured in India so eventually there should be plenty available. I think it is already FDA approved. I'm at Mayo, and they don't have it yet. There's also a gem coil that is inserted into the bladder and simply stays there for a period of weeks. Supposedly over 80% effective. I think my surgeon told me that it won't be covered by insurance unless one has already had BCG, which I haven't. Otherwise it is something like $70,000 per dose. Yikes. Anyway, good luck to your husband. There's a lot of stuff in the pipeline before we would have to give serious consideration to a cysctectomy.