Chemo treatment

Hi and welcome Svibrc but sorry you had to join us. I’ve had BCG it’s similar  to what you’ve had and found if I went home after having it and spent the 2 hours laying down I was ok but as soon as I stood up a mad dash to the loo, if you have to have more give that a go, I’m lucky as I only live 5 mins from the local hospital, could be different if I was further away. Good luck x

Hi Svlbrc, I guess you got gem due to the national shortage of Mitomycin. Similar in effect anyway I believe. My poor husband had similar issues. In the end, as we live 40 mins direct drive from the hospital and it takes maybe 20 mins to get from the treatment floor back to the car, this is what we did. He could hang on [mostly] till we got to the car and would then fall asleep while I drove home, but as soon as we pulled up it would be that dash for the loo. So after that I just set off avoiding the motorway and drove home slowly by country lanes, which added on a good extra chunk of time. The nurses insisted that although 2 hours was better, one hour would do a lot of good. At any rate he had a recurrence straight after 6 BCG but none so far on Mitomycin. despite some of the short retentions.

Everyone is different but I hope this gives you a bit less worry. Also the nurses think the imported batch of Mitomycin which they have had to switch to may be more irritant than the old kind. So a later batch if you need it could be slightly different although medically doing the same job.

Best, Denby

Thanks for your reply sueCC.  My 2 hour treatment time is spent in the hospital lying down and flipping every 15 minutes from side to side,on my back and then stomach. My nurse says everyone takes treatment differently and we can only do what your body will handle. 

Hi and a welcome from me. As mentioned earlier, gemcitabine is being used because of the shortage of mitomycin, but believed to have similar results. As it is a fairly recent treatment, there may not be many with experience of it. I hope all goes well for you. Best wishes.

Thank you for the input  Denby. That does make sense about the different meds. I am getting gem because of the shortage and did not have an option. My wife would be more than happy to drive me in hopes of keeping it in longer but didn’t sound like leaving the hospital was an option considering the issue I am having.  Great points to discuss at our next appointment. Thank you. 

Hi Svlbrc,

it’s amazing how different hospitals deal with things. I had a 6 week course of  mitomycin in the summer but was able to go home and was told to just leave it in for one hour which wasn’t a problem for me.

i had a follow up cystoscopy in September and was clear for the first time in 18 months.

Even though you couldn’t retain the chemo for the allotted time I sure it will have some effect.

I assume you will be having a follow up cystoscopy to check if it has worked? 
Best wishes Luce x

Hi again Svlbrc. As regards how to deal with the mad dash need, we had long been carrying a pee bottle discreetly wrapped in a coloured plastic bag with tissues. More recently he has had to resort to what the continence nurse we just saw calls 'pull-ups' ie disposable pants with a built-in absorbent pad. We get these [brand Tena] in a fair-sized Tesco which happens to be handy for us. Financially not too bad as most days he only uses one pair. A kind forumite has advised we will get a better deal online if we can't get NHS pants that work well, but I haven't looked into this yet. The nurse has banned him from all caffeine which was hard as strong coffee was the main antidote to the sedative side effects of other meds. But I think it has made it easier for him to make it to the loo.

I have wrapped the inside of a garden chair cushion in plastic and a towel and put the cover back on. This stays on the car seat so it just looks like a flat cushion but stops any leaks reaching the car seat. If we're going out in the day or two after each treatment, a small holdall with spare dry clothing and disposable pants goes with us. Better safe than sorry. There's simply no point being embarrassed about what can't be helped, just glad so far the treatment has prevented muscle invasion in his case.

Denby

Hi Luce x,

First off, glad to hear you are finally clear. 18 months seems daunting and you deserved a break. Yes, I will have a cystoscopy in Feb to see if it worked. Hoping enough was retained to do some good.

Thanks for your insight!

We aren’t quite to this point yet but good to know.  The caffeine might be something to think about too considering that is currently a daily thing. Definitely better to be safe than sorry and definitely good treatment has prevented muscle invasion. In our case we will see what the tests show in February for the next steps. 

Thanks for the insight!

Over and above caffeine the nurse mentioned tomatoes. He's been off those too but yesterday we had pizza for supper and he was up far more times than 'usual' last night. So think she could be right on that too. However unhelpful "senior nurse practitioner" this am will not even think about addressing the even-without-tomato-and-caffeine sleep-smashing frequency without a urine test for UTI, won't take my word for clarity and lack of smell, so sample left and back this afternoon to see a proper Dr. Grr!

Denby