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Will have my fourth instillation of BCG tomorrow at 11 am. Question-

1 year 6 months ago #53458 by DonnaD
Thank you so much, Jack. I will remember that and ask for it if needed. Don't know what I would do without you all who have gone before me! LOL.

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1 year 6 months ago #53455 by Jack R
Donna,

Congrats on finishing the first 6.

Follow ups may continue to have increasing side effects. If so, keep in mind that it is the initial round of six that is believed to be best given at full strength if it is tolerable. Reducing the maintenance dose, as needed to reduce symptoms, is widely supported. Discuss with the doc if needed.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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1 year 6 months ago #53447 by DonnaD
I finished the 6 weeks of BCG, waited 2 weeks and had cystoscopy and tissue to Pathology. MD said all looked good, waiting on Pathology. Meantime he said to schedule 3 month visit for 3 doses of BCG, which will be in August.

I only have occasional tweaks of pain in the bladder and urethra and even sometimes it feels like in the ureters, but none the worse for all the terrible side effects I had.

Jan, Feb, Mar, Apr, and most of May seem like a blur. Thank you all for your support. I'm here for you too.

Donna

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1 year 7 months ago #53259 by DonnaD
Jack,

Thank you for the articles. I am taking my time reading them and saved them on my computer.

D

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1 year 7 months ago #53254 by Alan
Donna,

We all learn from everyone's posts. Thanks,

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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1 year 7 months ago #53252 by DonnaD
Hi, Everyone,

I called Uro office this morning and told them I was coming over to discuss some issues and also to pick up copies of my two Pathology reports. I spoke with the Nurse who in turn spoke with the doctor. The doctor said as long as I was willing to put up with the side effects he wants me to continue with same dose. He appears to be very aggressive in treating this cancer.

The nurse suggested, and I agree, to take my Norco right before the appointment for my 5th instillation. She reminded me that this next one and the sixth one are going to be worse. I agreed to the plan as I want to kick this cancer in the butt and since I am strong enough I'm going to go ahead. I may be biting the head off a snake this Friday, but will do it.

You all have given me the strength to go on with your encouragement.

This is not unusual for me. I have a list of medication allergies that is a corner block long. I am sensitive to everything. I cannot even drink alcohol as two sips puts me "under." One ibuprofen of 200 mg knocks me out for the night!

I hope in the future these posts may help someone else who is highly sensitive to medications, treatments and to their own immune system as I am.

I'll let you know come Friday or Saturday or Sunday how the FIFTH went.

Sincerely - Donna
The following user(s) said Thank You: Alan

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