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Maintenance BCG begins … differences
Hi everyone–
After a “honeymoon” of nothing bladder-related to worry about after my cysto on 3/1, I started my three weeks of maintenance BCG this morning. I am on a one-third dose.I am passing blood in my urine from the get go, which never really happened until my sixth BCG during the initial instillation. Lots of spasms, too. Is this common?
I was pretty tired and dozed a bit during my rotations, and now I have a little bit of a headache this afternoon. This is all consistent with how I felt during the initial instillation. Wondering what tomorrow will bring?
I must say that a few weeks after the initial run was over, I regained my energy and have felt phenomenal since then. Tons of energy, feeling very strong and alive. No matter what happens over the next three weeks, I will get back to that place!
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13 Replies
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Daystar,
What dose strength is your BCG? Maybe your doc can reduce the dose if it is taking that much out of you.
One dose every month is not the norm. Typically, it is once a week for 6 weeks and then maintenance doses at periodic intervals that begin at three months and then stretch out to every other year of a dose a week for a three week period.
If I were you, I would send a note to Dr. Lamm. Go to this page: http://www.bcgoncology.com/treatment/bcgInst.html
Read the whole page and then click the Ask Dr. Lamm link to ask the question. Use the one that says you have a “New” question.
What your doctor is doing seems to make sense from a logical point of view since it seems to be hitting you so hard. It “MAY” mean (but I don’t know this) that the BCG is actually triggering a longer immuno-response in your case which would be a good thing. However, it could be a million things, so following up with your urologist was and is absolutely the right thing to do as is asking Dr. Lamm because (in my humble opinion) he is the top expert in the world on BCG and has done and is doing the most research.
Hope that help!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
I Am about to start maintanace next week, but i am still so tierd and dont have any energy they did blood work and all that is fine, i have had two rounds of bcg 6 weeks each timee last one was 3 months ago, so i had my check up doc said all looked much better so he put me on 1 bcg a month for 6 months is this right and is it normal to be so slow at getting energy back, i am 68 yrs old and I have lost strength in my whole body
I didn’t have that many rounds of bcg, but had months of chemo for prior cancers. Cynthia, like your “Chin up and straight forward”. My “Get tough, be tough, stay tough”. And as you say “sights on the goal” It’s all a mind set! A way for each of us to find a way to keep pushing forward. Kimberly, it sounds like you have found that mind set too. If you can make the bcg work for you, it will all be worth it. Hang in there.
Duke
Well said Cynthia. When I was taking BCG and as it wore on me all I had to do was think about those with worse problems. I had too many friends taking heavy doses of chemo for other cancers to despair very long about BCG. Not to minimize it’s effects!
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.
Kimberly,
Our jobs as we go through treatment is to be a good team player. We have to know what is normal side effects and what is not. We need to report anything that could be of concern as to limit any damage done to our bladders. We really need to see a lot of research into BCG to clarify the amounts needed and rhythm of treatment. But one of the take aways people get here about doing BCG is should be this. Your odds of winning the battle using BCG are vastly improved by being informed enough to have conversations with your medical team in order to miss the land minds. I have been through both BCG and systemic chemotherapy. BCG wears on your minds with so many facing you and it tends to get worse with progression, and there are worries about the infectious potential and it gives you some days of being tired and for some real fun times camping in the bathroom. In a word I found BCG wore on me after a while. But on the upside the worst part for me was having it to look forward to nothing was ever as bad as my mind made it by the time it was time to go again. Feeling bad for me unless there was a problems only lasted a few days. If someone asked me to give one word to describe BCG it would be tedious……….. But like any of the treatments I have had I just set my sights on the goal; beating this thing.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Oh Kimberly, I LOVE it: “My husband pointed out that the “old me” is busy working with the BCG to keep me cancer-free.” I wish someone had told me that when I felt so lousy!! We need to remember this quote for the new people coming along.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thanks for the info, Cynthia and Sara Anne! Turns out I had both “normal” BCG passing of clots and blood, but I also had some bleeding due to a traumatic catheterization, so I’m back on Cipro.
It’s day 2 and I still don’t have a lot of energy and feel hungover and headachey, but no fever and nothing that would have me running for the ER.
I was feeling a little self-pity this morning and told my husband I missed the “old me” who had energy and was raring to go. My husband pointed out that the “old me” is busy working with the BCG to keep me cancer-free. Sensible guy, that husband of mine …
Hang in there, Mark! We will get through this!
Yes, the fatigue seemed to me to be worse the day after…
I was on the full dose until partway through the maintenance doses and then it was reduced to 1/3. While not fun, that seemed almost tolerable. But it is worth it since this seems to be something that can really work to keep the “beast” at bay…
Of course, now that my BCG is over, I can say all this!! Not fun, but much better than friends I have known who have had to have combination chemo for other cancers.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
I just finished my first round of maintance at full strenth yesterday. First treatment I only had some burning and the 2nd and 3rd had some blood thrown in for 6-12hrs after the treatment. The worst part for me is the treatments zap my energy. It hit me hard today for some reason.
The bright side is it’s keeping my cancer at bay so far and now I’ve got a little over 2 months off until the next checkup. If I get another all clear in June I’m going to discuss decreasing the dose of the next maintance round with my Uro.
47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.
Sara Anne is completely right. When I had BCG I had prolonged bleeding and was told to always let them know if I experienced any bleeding at all. The idea is to keep on top of side effects and adjust as needed either to control the side effect through medication or reduction of BCG. Their worry was that so many people do not finish the BCG regime do to side effect that being pro active was important before it got to that point. Also they will not give BCG if there is active bleeding but I am sure you already know that.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Of course you need to discuss ANYTHING that happens with BCG with your urologist. However, bleeding the day or the day after instillation is not uncommon after several doses, and is described as a side effect in the literature that your urologist probably gave you. It is something to discuss with him, but is not a “panic” issue, as would be a high fever, for example.
SA
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Kimberly if you are passing blood let your Urologist know. If need be we have seen BCG reduced to 1/10th when people have had severe reactions.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Yes, that sounds pretty typical to me!!! That kind of stuff didn’t happen until I was well into the BCG. Made the discomfort of the first few seem insignificant.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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