Forum

× click the New Topic button to post

BCG side effects

5 months 3 weeks ago #55427 by Jack R
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

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 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

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

5 months 3 weeks ago #55426 by Jfoutz
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

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

2 years 1 week ago #52397 by Jack R
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

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 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

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

2 years 1 week ago #52396 by Sean T
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 rounds total - last March, 2018). As of latest cysto, Sept. 12, 2018 - cancer free!

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

2 years 1 month ago #52189 by Jfoutz
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

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

2 years 1 month ago #52186 by Jack R
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

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 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

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

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add attachements.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddiek

Users

Total Online: 2 Users and 383 Guests 
Jack R's AvatarJack R, Regor's AvatarRegor

Legend: Site Administrator Global Moderator Moderator Banned User Guest

Statistics

Total Messages: 50835 Total Sections: 1 Today Open: 1 Today Total Answer: 5
Total Subjects: 6514 Total Categories: 11 Yesterday Open: 3 Yesterday Total Answer: 9
Total Users: 7771 Latest User: Rev
Powered by Kunena Forum