× click the New Topic button to post

Still burning 5 weeks after BCG

3 months 2 weeks ago #59467 by musicplay
An update on my progress. It's been almost 7 weeks now and the burning is still ongoing though in general it has become more tolerable. I had my follow up cystoscopy on Wednesday and there were no visible tumors (yeah!). Just a whole lot of inflammation. He did a cytology wash and I get those results on the 25th. Then we'll discuss how to proceed. Hoping and praying those cytology results are negative.

Thanks again to those who have shared their ideas.

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

3 months 3 weeks ago - 3 months 3 weeks ago #59438 by Alan
Nothing says you have to do X number of installations, although at least 6 have proven to be a rough start. A few here are not able to continue beyond that level. Many start maintenance and have to stop somewhere along the way. My URO had me on 6 then another 6 later and that was it. With an angry bladder it is very probable your system is giving some good action and working.

I would certainly keep in touch with your URO for pain control, follow each scope schedule and start maintenance if your bladder and Doc say go ahead. possibly at a lower dosage.

Keep posting as you go. We all still learn from each other.

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.

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

3 months 3 weeks ago #59437 by musicplay
Many thanks to all of you who have responded. I did take AZO for about the first two weeks and yes it did help. Not complete relief but it helped. Then I started getting short of breath and coughing and I read that too much AZO can cause that, so I stopped taking the AZO. I was also on oxybutynin which was giving me super dry mouth, bad taste in mouth and constipation so I had to stop taking that also.

A bit more background, I've been fighting low grade for over 5 years. I've had biopsies taken 3 different times and TURBT three times and cystoscopies with fulguration (when needed) every 3 months. The last biopsies showed some high grade (non invasive) both at the mouth of the bladder, inside the bladder and in the prostatic urethra. My URO at first recommended a cystectomy because he felt the BCG would not work inside the urethra, but he sent me to Seattle to U of W medical center for a second opinion and they said I should do BCG. They said it would "find it's way" into the urethra. So my URO agreed to try BCG but he wanted to make sure the urethra was exposed so half way through each treatment I was to urinate a very small amount and then stop in order to help expose the urethra to the BCG. On the first 4 treatments I was able to do that successfully but on the fourth one that process caused intense pain. On the fifth and sixth treatments I was unable to do that but did complete the treatments otherwise. Of course, I have spoken to the doctor about the ongoing pain and while they express surprise that the pain is still ongoing, they've not suggested "why". They did say they might put me on a "pain management" program. I go back on the 10th for the cystoscopy but right now I worried I won't be able to tolerate the procedure even. The last few days I've been taking Tylenol 500 mg 3 or 4 times a day and that has helped some but the burning is still there, sometimes worse than others.

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

3 months 3 weeks ago #59436 by Alan
5 weeks is too long to still have the side effect of burning. Yes, get your URO involved with some meds. Also, if you continue it is possible the strength should be cut down to 1/2, 1/3, 1/4, 1/10. Another topic to discuss. The follow up cystoscope may help on that evaluation.

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.

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

3 months 4 weeks ago #59435 by dtat60
I've had a total of 24 BCG treatments so far. Several times (especially after my first few treatments) I had lots of burning and also blood. I found that AZO helped me. It is OTC and causes your urine to be Red or Orange but did seem to help the burning. Now I seldom have the blood and only burning for the first day so much better. I seldom have to use anything anymore so maybe you will have the same results.

Very thankful that the BCG treatment have worked for me so far (Knock Wood) :laugh:

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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

3 months 4 weeks ago #59434 by sara.anne
Sorry to hear about your problems. Some people have minimal trouble with BCG and some become really sensitive and have issues such as yours. This is something you should be discussing with your urologist. He/She has medications that can help with the symptoms.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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 Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 140 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 7 Latest User: Flytoboat
Yesterday Total Opened: 0 Yesterday Total Answered: 5
Total Posts: 54205 Total Subjects: 7110 Total Users: 6687