Cytox and Mesna

[me2]

Hi Ron, I think you are ok with doing what you are doing. I literally spent over two hours on the phone calling pharmacies and hospitals about this issue. Most of them are completely unfamiliar with the oral liquid use of Mesna. I finally did find a pharmacist at the University hospital in Seattle where I get infusions who was familiar with the use of oral liquid. She did confirm that it was the injectable drug being given in oral form. She said they used it that way on people who were in the hospital and mixed it in with a drink- as you are familiar with. She did not know details beyond that and suggested I talk to the infusion pharmacist. I have been getting infusions there for months and didn't even know they HAD an infusion pharmacist. I now have someone to talk to when I go for my next infusion.

I tried to talk to the infusion clinic on the phone and they wouldn't even answer any questions. They kept telling me to talk to my doctor. Well, that doesn't help me because he doesn't know anything and is impossible to get ahold of. I left a message and never heard back- as usual.
I will be getting a NEW doctor soon and I look forward to getting better treatment- we shall see.
Still, calling LOTS of pharmacies I didn't find any that were nearly as cheap as what you are getting. Are you getting the 10ml vials of the injectable Mesna about every twelve days or whatever the math is? They told me it doesn't last long in that form- but once again were not real familiar with someone using it at home.
Is this a home town pharmacy you are using or one that is associated with a big chain or a University? I don't need a name but just an idea of the type they are.
I too found no contra indications to using it the way you are except that it needs to be diluted in a drink. I heard of someone quite some time ago taking oral liquid in drink daily and hadn't heard of it again until you. Thanks again for going over the numbers again. I am going to stick to this problem until I've left no pharmacist unturned. Take care, Kirk

[Thakator]

Hi Kirk,
Too bad about your docs' unavailability. I'm lucky on that point as well, mine gave me her e-mail address right off the bat and has never failed to mail me back with full answers to my questions on the very day that I send her a note. I don't abuse the availability but I sure do use it often enough.
My pharmacy is an independent, small town one and that's probably why they are cheaper - - first name basis between myself and each pharmacist, very nice. I do get the 10ml vials, have read all the fine print in the blup that comes with the stuff from the manufacturer (APP Pharmaceuticals) and there's no mention of a shelf life, doesn't have to be refrigerated. Good hunting, Ron

[me2]

Thanks for the all info Ron. I'll let ya know here what I eventually find out. Man you have a great thing going with your doc and your pharmacist. It really helps for me to hear the kind of care others are getting like yourself so I can tell my new doc what I expect. Maybe me and my WG should move to Kentucky. ha I passed through your state once and I thought it was gorgeous. Thanks again. Kirk

[Thakator]

Kirk, Again, you are very welcome. Makes me feel good to give back even just a little for all the help I've gotten from this site.
If you ever find youself out and about and near this here land of the blueish grass, please let me know and I'll provide a guest house in the woods and a personal greeting from a fellow weggie. You take care in the intereim. Ron
Ps - - my doc is not only sharp enough to have come up with the cyto/Mesna routine, considerate enough to permit timely e-mail contact, personally involved enough to call me directly fairly often (she calls, not a nurse or a receptionist), familiar enough with wegs to have picked up on it during our very first visit, sttrong enough to have succesfully pushed for quick visits to any other specialist since getting me dxed, well-trained (Columbia), well versed and well-connected (CC); but, she's a downright cutie to boot! I know this won't get me off of Sangye's nag list, but not too bad for a Kentucky boy who finds himself in true need of a real doctor at this stage of his life. R

[me2]

Its heart warming to know that someone is being taken good care of with this illness - and encouraging. I think you have presented enough evidence to get 'de-listed' by Sangye for perhaps a short period time. Just don't mess it up buddy!!! I'll yell at you myself if you get yourself
short-listed some how.

[Sangye]

ROTFL... He's on my Nag Probation list.