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The first 4 months part 1

12 years 2 months ago #7849 by Yosarian

BC adventures in Florida Part Deux-B

Just a quick update on my 2nd BCG Maintenance treatment (8th overall). Well as the song says “I’m still standin”. My appointment was at 10:30 and I finally got into the "inner waiting room" about 11:20. I gave them my urine sample and was soon appraised I had an elevated leukocyte (white cell) count but the Nurse checked with the Dr, and said to go ahead as it “was probably a reaction to my last BCG treatment.” I was then asked if I had and severe reaction to the last BCG treatment –Temp over 101, severe pain, nausea, copious blood, howling at the moon etc, and I replied “No, not that severe” AND so I got the full strength again.

Well Nurse Ratchet came in again and injected the lidocane and for the first time out of nowhere put this wire clothespin like device on me to hold in the Lidocane. I think the origin of the device was during the inquisition as it had “Made expressly for Tomás de Torquemada” engraved on its side. Anyway it hurt worse than any pain it could have prevented so as soon as she left I tried to pop it off but it flew across the office and luckily clanked into the sink where it immediately attacked the finger of a discarded rubber glove.

Anyway, Nurse Ratchet soon returned and after giving me the "raised eyebrow look" about the stray “vice grips” which she found in the sink she inserted the catheter into me in record time. Ouch! Double ouch ..I was beginning to wish I had left Torquemada’s little tool on my little ...! So I got my BCG in about 2 minutes and she was gone.

During my all alone “clean yourself up time” I did just that but since I was in the room where the cystoscope is kept/used I looked at the model name/number –it was an Olympus –clk 4. Does anyone know if this is any good? Wendy?

I was able to hold the BCG in for 2 hours and 2 minutes. But then experienced the burning, the urgency, and the frequency. By about 2PM my temp was almost 100 and I felt mild flu like symptoms but what bothered me most was not the small amount of blood in my urine but the several pieces of blood covered tissue that popped out lile little bullets. It was a little weird..kinda like in “Aliens” when that thing popped out of that guys stomach....anyway at least mine didn’t scurry off. Then I experienced some panic thinking "Were these little creatures part of a new papillary tumor breaking off under the BCG assault???" Help!

Oh well ..by Friday I was pretty much back to Normal except for some remaining irritation in my urethra. And no more aliens!

On Wednesday I go back for my third a final maintenance BCG treatment for a while.

In the meantime I hope my experience helps some others (as well as me hahaha) and the all are feeling fine and enjoying Labor day.

Yosarian

PS. My leg/foot seem fine now.
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12 years 2 months ago #7786 by Rosemary
Yosarian,

I want you to know how much I enjoy reading your posts. Your good humor about some very trying circumstances helps me bear my own BC related burdens a little better.

Thanks, Yose. I hope everything goes well today.

Your BC buddy,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
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12 years 2 months ago #7782 by Yosarian
BC adventures in Florida Part Deux-A

Good Morning All,

Well it’s 9:00 Am Thursday morning and I go in for my 2Nd maintenance BCG here in Sunny Fl.today-- Scheduled for 10:30AM. Armed with my note from “Yosarian’s Mom” (Patricia)as well as the good advice of soo many... Rosemary, Wendy, Patricia, Rosie, and more... as well as my call to the “free psychic hotline” who sensed I had a problem! heheeh (Joking).

Anyway, I did have ½ cup of coffee at 8 AM and took my temperature (my normal 98.1) and feel pretty good. I did this (taking my own temp and noting how I feel) so I will know the effects of the BCG afterwards.

I think I’m going to get “Full Strength BCG” again today but we will see how it goes and will try and let you know. If I happen to see my actual Fl Dr. (but I doubt it) I will try and ask about concentration and Hexvix also –although down here I think they use an Eveready flashlight hooked up to a Sears Diehard Battery... at least that’s what it feels like!

On a somewhat related note I went to my GP on Tues as my foot /calf swelling had returned along with some “tingling sensation”--- as if your foot /leg were asleep. Also some very minor muscle cramping. He said he now thought the two things (the red rash down my thigh to my ankle and the swollen foot) were caused my two different things. The antibiotics cleared up the rash but the foot was unaffected.

Yesterday I went for both a Venous and Arterial Doppler Ultrasound on my left (affected) leg as well as my surface veins. By yesterday afternoon my GP office called back with good news that all tests were negative. My foot/leg swelling seems much better today and I hope it goes away completely and is unrelated (as I think it is) to my BC.

On one more related note..I asked the lab where I had the work done to send a copy of the lab write –up to me as well as my GP so I could keep my own file as well as share with my Uro if needed. They refused saying only my Dr. could give it to me. I thought I had a right to a copy of the information but down here in Florida it’s still legal to get married to your first cousin if you are at least 10 yrs old and have at least three teeth--- so I don’t know...................

Your Blundering Blabbering Buddy ,

Yosarian
And remember... Time flies like an arrow; fruit flies like a banana!
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12 years 2 months ago #7753 by wendy
Hey Yos,

Don't be shy about continuing to ask for Hexvix at MSK..they just may get it in the future (especially after all the nagging patients have been doing!). However, it is still in the clinical trial setting so you may not qualify...you could ask for it for anyway and might be able to get it (if you offer to pay out of pockect, for example). Maybe you don't need it because BCG will knock your stuff into outer space.

Will say a little prayer that all goes well for you on Thursday. And Pat's smart to read the small print on the inserts, let's hope all the nurses do too.
Wendy
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12 years 2 months ago #7727 by Patricia
Dear Yosarians Florida Doctor,
Yosarian cannot take his BCG treatment at this time because his car broke down and he has to take care of his sick dog. OH and
Intravesical instillations should be postponed during antibiotic treatment since antimicrobial therapy may interfere with the effectiveness of PACIS” (see DRUG INTERACTIONS). PACIS should not be used in individuals with concurrent infection.
Sincerely,
Yosarians Mother
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12 years 2 months ago #7725 by Yosarian
BC in FL –Part Uno/B heheh

Hi Wendy and all other BC Bothers and sisters in Harms way..............as well as those who love them (or are even a little fond--that counts too)

Okay I have BC but I didn’t think duh I was an idiot ...now I may have to reconsider! Ah Naroband equals NARROW BAND ....good thing I’m not a detective or the streets sure wouldn’t be safe and OJ would have probably gotten off..OPPPS .hehehe

Anyway, thanks for the catch Wendy and I’m happy to hear, read, see that it is such high quality scope...but it would have been nice to see a genuine “Blue Plate Special “ BLUE LIGHT as a back-up and or contrast...maybe I will screw up some latent courage and ask next time I'm at MSK in the big Apple...( but I doubt it)

Anyway, the foot swelling and the leg rash were both of the same bacterial origin (entering through the small cut on my foot it seems. The rash has disappeared and my foot is almost back to its normal “foot in mouth” size. I seems it was completely unrelated to the BCG as far as my GP can tell.

On another front I did actually get a call back from my FL Uro’s office staff saying that they did check with the Doc and that if I was in EXTREME DISCOMFORT and had a temp of over about 101 and was bleeding from my ears they would cut the dose in half. (Okay I made up the part about bleeding from my ears..) ,

So as it stands now I will be getting another full dose of BCG on Thurs (unless I bring a note from my mother ).....okay I made up the party about a note from my mother.............

Please wish me will and I will in return send you a years supply of good wishes ...all you need to pay is a small shipping and handling fee....
My best to one and all and all and one ,

Yosarian
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