BCG side effects

5 years 9 months ago #55427 by Jack R
Replied by Jack R on topic BCG side effects
Janice,

Very happy to hear that you found a treatment that works for you. Such a great feeling to get a 'clear' report. Keep it up.

I chose to go for IV chemo after a second type of cancer was found in my one remaining kidney Rough with only one kidney, but so far - so good. A second round was recommended after blood work recovered, and I'm half way through. Kidney tumor is to be "cooked" after chemo finishes. Hoping chemo will get rid of the nagging bladder cancer that goes away then pops back up.

We are lucky to have options that were not available just a few years ago.

Keep up the good work.

Best,
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis 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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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5 years 9 months ago #55426 by Jfoutz
Replied by Jfoutz on topic BCG side effects
Hi Jack,
I was just checking on you. I see you are into your second round of chemo. Is it intravesical? I had to quit BCG since it wasn’t working. I did 6 treatments of gemcitabine in December and I got my first clear cytology in April, so I hope it continues to keep it away. And hoping it works for you also!

Best wishes,
Janice

Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018

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7 years 3 months ago #52397 by Jack R
Replied by Jack R on topic BCG side effects
Sean,

Individual reactions are wildly different, I hope you get the luck of the draw and the side effects remain minimal.

EVERYTHING I have read supports BCG as the best, first line treatment for superficial BC; there is no way I would trade a few days of misery for a less likely effective treatment.

By the numbers, a large percentage of people in some studies do not finish a course of BCG because of the side effects. I can't understand that logic. I do take narcotics for a couple of days at each dose of BCG - something I don't like doing, but I want the best BCG results I can get.

Hang in there. We will beat this cancer !

Best
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis 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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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7 years 3 months ago #52396 by Sean T
Replied by Sean T on topic BCG side effects
I just started BCG today and I have no side effects. But after reading this forum I see that I may not be so lucky as the treatments progress. That will be okay with me as long as this works.

08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total - last March, 2018). As of latest cysto, As of May 4, 2023 - cancer free!

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7 years 5 months ago #52189 by Jfoutz
Replied by Jfoutz on topic BCG side effects
Jack,

My doctor said in 38 years he had never seen this, but I was the 2nd person this month with those side effects, so you never know. I have been going to UTSW in Dallas, but I may head to MD Anderson in Houston for a second opinion. I sure don't want this to progress so I'm with you on losing the bladder if I need to.

Janice

Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018

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7 years 5 months ago #52186 by Jack R
Replied by Jack R on topic BCG side effects
Janice,

My uros have presented a whole list of second-choice options if the decision is made to stop BCG. These include: gemcitabine, apaziquone, docetaxel, BCG combined with interferon, BCG plus cytokines, intravesical chemotherapy, and thermochemotherapy and combining drugs.

So far the CIS has not progressed; sometimes it seems to be gone, then it is back. The docs are encouraged that it has not progressed, and it seems to go into remission at times. But it has not stayed away.

I will try whatever they think might do the job, but if there is any sign of early progression I am ready to give up the bladder. I don't intend to wait for a T2 diagnosis.

Thank you for bringing up conjunctivitis. I have had arthritis for a few years and BCG does increase the pain and swelling. In reading about the BCG Arthritis connection, I had not seen anything about eye issues. Learn something new all the time here.

Best
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis 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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

Please Log in or Create an account to join the conversation.

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