Go figure, I had my 4th maintenance round, 3rd BCG this morning, expecting today to be worse than last week since last week was worse than the first week and this afternoon was hardly anything? I really drank plenty of fluids and could see myself clearing up each time for that urgency trip. Now the 4 week wait for the cysto and the good news. Really trying to get this positive thinking down to a science since I was told worrying doesn't do you much good! But it is tough! Good thoughts for everyone else!!! Jay
Thanks - yah I know they all can be different. I was busy moving last week and wasn't able to get any azo or find my Advil, so shame on me.
I know they can be all so different based on your immune system and the thinning of all of your parts in the middle. I just wasn't expecting the escalation. Well now dosing on azo and drinking water like a fish hoping to flush as much out as quickly as possible. I'm not too concerned with the pain as there isn't a ton of blood, but the AZO is certainly helping with frequency as well
I had most of my discomfort and side effects with treatment 3 of my initial 6, and with my first set of 3 maintenance treatments. With each BCG treatment, I had a variety of side effects (flu-ish, urgency, etc) for the first 12-24 hours after each treatment, but most of the issues subsided within the 12-24 hours. I also have had some joint pains since my first set of maintenance treatments, but luckily the pains/discomfort did not get any worse with my second set of maintenance treatments. For my second set of maintenance treatments, I was more proactive. I took some Advil before I went for the treatment, and I took AZO about 30 minutes before I voided the BCG. I also started drinking my water about 20 minutes before my first void, so that the BCG was diluted some when my 2 hour hold time was up. That seemed to work for me. I still had some feelings of urgency and 'peeing razor blades' for a few hours, but it wasn't any where near as bad as it was for my first set of 3 maintenance treatments. So far, all of my treatments have been at full strength.
Take care and keep us posted,
Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.
Some people are more sensitive to BCG than others. There is no magic dose of BCG....it just happens that the dose given is the one that was available when it started to be used. It is possible, and very common, to use much lower doses when sensitivity and side effects become unbearable. Dr. Donald Lamm, one of the real experts in BCG therapy, has shown that as low as 1/10th the initial dose is effective. By the time I was about half-way through my treatments, we were using 1/3 the initial dose.
Please talk to your urologist about reducing the dose.
Even if you cannot tolerate the full series of BCG treatments, you ARE getting an effect!! And if you do decide to quit you will still have a good bit of the intended benefit.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Josh: I can't give you any direct answer because each time I have a BCG treatment, that day is always a little different. I started my 4th round of 3 month maintenance 2 weeks ago and have my 3rd one tomorrow. 2 weeks ago, the day was just urgency and a little pain. Last week was that and feeling like garbage all day long, tired, painful joints, etc. Tomorrow I'll see what happens and post. All I know for sure is the quicker you drink, drink, drink afterwards when home, gets it out of your bladder and you feel better. Jay
3 years 1 month ago - 3 years 1 month ago#51744by jroza1
So I am in my 2nd round of many of BCG based on my treatment plan for the next 18 months. I had surgery in march and my first 6 weeks were april into may, with a clean scope in june, resuming BCG last week for 3 successive weeks. My first observation is that the catheter has been less painful and some what easier to deal with, but the pain associated with the treatment has been far worse this go round - probably than all of the prior 6 combined.
In the round of 6, I generally didn't take AZO or advil and in this round last week I didn't take AZO and nearly passed out on 1 or 2 of the voids because the pain was so intense. I was also far more fatigued this time. I basically spent all yesterday and last week sleeping because my body was having a lot of trouble with the pain and the immune overdrive created by the regimen. Is this common? I also have a lot of joint pain this time versus last time. lack of appetite...
I am curious to hear from people who have had multiple courses. I have 1 more week this round and then 6 weeks till my next scope and 3 weeks of treatment 6 weeks after that and so forth for another 15 months. just curious if the pain continues to increase or if it levels off.