PROSED - Medication for BCG burning

Sandra,

I'm glad that your doctors are alerted to the fact that any strange thing going on with your body right now could be related to BCG's.    It sounds like that Bakers Cyst is very painful.  I wonder if you already had the Baker's Cyst and the BCG's caused increased inflammation?  I could believe that very easily.

You are right, I'm not sure how a reduced dosage has helped with the burning and bleeding that I've been experiencing this go round.  I had a LOT of bleeding yesterday, more than ever before.  I think that my bladder is just tired of this.  When I told my doc about the wicked burning and bleeding last week, I also asked him, "Doc, are we doing overkill here?" and he shook his head, "No."....That's when he offered the PROCED.  It really did help the burning. The malaise was pretty profound on yesterday, also.

Please hang in there, My Friend.  I truly hope that you make it to New York.  

Your very good friend,
Rosemary

Hi Rosemary: Well I read that our last two Thursday have not been the best....here's what I wrote to you last week:
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Re: Silly BCG Question
Reply #16 - Apr 27th, 2007, 3:44pm Hi Rosemary: I got a whole dose yesterday (my 8th) - and since dose 4 I have had the same side effects. I am okay with the first void and then it's all over. Within a few minutes I get the burning and urgency (like I have never known) and I sit for the next three to four hours either on or pacing very close to the Toilet (as sitting in a chair is uncomfortable). During this time I void a drop at a time and it is getting worse everytime. Yesterday after the first hour of treatment I started drinking water (consumed 1 pint) but then I could only hold the BCG for 1 1/2 hours. I consumed another 3 pints of water the next 1 1/2 hours and did not drink cranberry juice as before (considering that it might be adding to the burning as it is acidic). I also have "trash" in my urine and I sometimes assume maybe this is the problem - it blocks the urethea and takes its time passing. I too consider each time that I cannot do this much more, then it subsides....and it's on to next week. The good news is after next week I get a break until July 11th my next poke and peak.

Rosemary, I hope this all goes well with you and your "toes"....which is also a common bond we might have as my right knee (the one with the ganglion cyst) looks as if I swollowed a bowling ball and it stopped at my knee! It's painful and huge. Anyway, hope you are doing well today (back at work perhaps or resting up at home)....here's to next Thursday.
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Dose 9
My yesterday was much like yours....sometimes the pain in the urethea made my spine shutter - I truly equate it to contractions and giving birth (except the urethea is obviously even smaller than the birth canal). Had tissue and clots. This lasted from 2 - 9 p.m. yesterday. I am not sure at this point I can do it again at next maintenance time. Luckily we stayed in Bethesda just 5 miles from Walter Reed - and I barely made it. I was thinking that I would ask my Oncologist for a weaker dose, but I think I read you are on a weaker dose and that doesn't seem to be working for you. Today I am experiencing just burning, but this I can take.

On another note, I went to GP today to have my right knee check (had MRI in Jan showed Ganglion cyst on Miniscus and another tiny cyst)...well four days after first maintenance BCG I woke up with my right knee looking like a bowling ball (at least twice as large as my left knee) has taken refuge. Very painful as well. Well, my GP says I now have a Bakers Cyst and to talk with my Oncologist as this might be a side effect from the BCG. I thought of you and your toe. Anyway, to make a long story short I now have to get an appt with an Orthopedic Doctor (will either drain or operate/I choose drain lol)- probably be civilian as ALL military Orthos are way too busy these days.

Just when I had a two month break until my next Poke and Peak and now this....the was to be my first real break in six months. I still have my train tickets to go shopping in NYC and visit my youngest son. I am determined to use them THIS YEAR! Hope you are much better today - think you have one more to go and then you too get a rest. Take care, Sandra

Hey, Rabb, how are you?

Well, the day has passed and I'm still seeing blood.  It sounds like your hubby and me are on the same train track.  About an hour ago, I felt I couldn't take another step, and I just fell into the easy chair and covered myself with my security blanket and drifted off to some place, I don't know where.

The burning was not so bad, but the bleeding has been much worse.  Why don't you see if you can get Steve some of the PROSED?.  You can ask about it anyway, they must have something similar over there.   I am so glad that there was no CIS.

Pat,

Thanks much for the concern.   I had big plans to make dinner.  I had a craving for Salmon Cakes  with Dill Sauce and went to Walmart and bought all the stuff.  Instead, I called in a pizza.  I think I can make it across the highway to pick it up.  

Flu like symptoms, describes it well.  I don't think I have fever, but, I've had a couple of chills.  Tomorrow, should be a different story. The bleach smell is just from having bleach around to pour in the toilet about every 5 minutes.

Thanks,
Rosemary

Oh Rosey.....get on an antibiotic..you poor baby. Honestly is the cure worse than the disease? OUch............wonder why the bleach smell? Isn't that what you put in the toilet? Call the doc.........love ya Pat

Oh and by the way, he voided every 5 minutes for 3 hours and passed clots - if that makes you feel any better ......

Hi Rosemary

Just to say Steve has just completed his first three maintenance BCGs. His 3rd one left him doubled up in pain. It was awful. The pain and burning was only mildly relieved by co-proxomol. Wonder if he can get your 'numbing' stuff here in the UK? He has also had a urine infection, 10 days after instillation, which has been treated with antibiotics. He doesn't want next 3 in 4 weeks time. I think this may be different to the USA. We have 6, then 3, then another 3 five weeks later, then biopsy. He said the last of the 3 was the worse pain ever. However, knees have been ok, but eyes are quite dry. and tiredness is the same as ever.

Sorry to hear about your symptoms, but it seems to be the way for some sufferers. However, no sign of CIS after first 6 so hoping it is going to stay that way.

By the way, how much water to you drink a day?

Ceri
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