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BCG, Mitomycin or nothing?

5 years 8 months ago - 5 years 8 months ago #45481 by Nicke
I had my second dose of Mitomycin yesterday. I have had very little side effects, almost nothing. BUT, yesterday the nurse manage to put a lot of air into my bladder as well. "-It´s all right", she said. "-It can´t do any harm". Sure, NOT! During the day it was OK. It came some air together with the urine, unpleasant, but not painful. This night, I was up for a pee. At the end, suddenly it felt like I got a knife and a kick in my left kidney that floored me. I was in a terrible pain, lying at the bathroom floor for about 10 minutes. I think I fade off because of the pain for a while.

My own conclusion is that the check valve from the kidney leaked back way. The check valves is made for urine, but now it was air! I still have some pain today, and I did not get any sleep for the rest of the night, because of the pain.

Have anyone have similar experience? Do you think I have to be checked up for this? I will be in contact with the clinic as soon as they open.

Niklas

12-12 Diagnosis
13-1 Turb TAG1
13-5 Turb Ta low grade, multiple
13-10 Turb TaG2, multiple
13-11 Mitomycin 8 weeks + 6 month
15-01 Turb

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5 years 8 months ago #45450 by sara.anne
So sorry to hear that you have joined us, but welcome anyway!

There is a lot of information on BCG in this forum...just "search" for it. But to answer your question about the side effects, BCG is an attenuated tuberculosis bacteriium and its purpose is to cause an immune response in the lining of the bladder which will also fight the cancer. It is especially helpful in the case of CIS (which I also had). CIS is high grade, as you mentioned, and it is important to get rid of it asap.

The side effects usually start out with mild fatigue. The first few hours after the instillation there is urgency and burning and sometimes bleeding with urination. These side effects become more pronounced with time. And this is what you want....it indicates that the immune reaction is what is should be. It is a bit uncomfortable, but usually only lasts a day or so. It is much less unpleasant than traditional chemotherapy.

I would suspect (I am NOT a doctor) that your husband's urgency problems are due to the CIS!! After several BCG treatments, mine practically disappeared. I was told, after instillation, to hold it as long as possible, with 2 hours being a goal, but not to despair if I didn't make it. Perhaps your husband can arrange to lie down at the doctor's office immediately after the treatment. This should help him to hold it as long as possible...rather than trying to walk around or drive home!

It is certainly worth trying to have the BCG treatments. If they work, it would be MUCH preferable to having the bladder removed. I was able to have the complete series of BCG (6 times, once a week) and then the maintenance series (every three months, once a week for three weeks)for two years.. If the side effects become too bothersome, it is possible for the dose to be lowered. I was on 1/3 the initial dose by the end, and it is possible to go even lower and still be effective.

This article gives a pretty good overview of BCG
http://emedicine.medscape.com/article/1950803-overview
Remember when reading about the side effects, that they ALWAYS mention everything....and these are all unlikely to happen to one patient!!

In summary, BCG is very do-able and can truly help in cases of CIS.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 8 months ago #45449 by mareewifeofgreg
Hello. We would be interested to know what are the side effects of BCG? Is there an alternative to BCG apart from removal?? BCG has been rec by the uro here in NZ. But my husband may not be able to tolerate this, as you have to hold it in for like 2 hrs? he suffers from extreme urgency, frequency & pain - to the point sometimes he does not like to walk anywhere. It is not looking great for him - he has CIS which is classified as high grade, but non-muscle invasive. He is an ex-smoker of 9 years, but while a smoker, he was also involved in the rubber industry - making conveyor belt repairs - & now we find out those 2 issues are a great risk factor for BC. Add to the mix, a lot of stress regarding workplace issues earlier this year & is it any wonder that it has turned to this? Otherwise, a healthy, 59yr old guy, who loves his fishing & hunting, but much less so these days. We also, hardly knew BC existed before this, & as there si no cancer anywhere in the family, it was never of great concern to him.

Thanks for listening & I so hope your treatment is successful.............

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5 years 8 months ago #45445 by Nicke
Thanks Allan for your comments. I had a good conversation with the doctor and we did decide to go for Mytomycin at this point. Even if it was G2 the last time they see my BC as low risk Ta. Mitomycin is what they usually use for cases as mine, as a first choice. If it doesn´t work, then they use BCG.

I will start the treatment on Wednesday and then once a week for totally 8 weeks, then once a month for 2 years. If It still comes back, then we switch to BCG.

First follow up cysto will be in three month. I will finish the first round of treatment just before Christmas.

Niklas

12-12 Diagnosis
13-1 Turb TAG1
13-5 Turb Ta low grade, multiple
13-10 Turb TaG2, multiple
13-11 Mitomycin 8 weeks + 6 month
15-01 Turb

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5 years 8 months ago #45443 by Alan
I second what Sara Anne said. My URO personally looked at the slides from the pathologist and said mine could have possibly been graded G2 but for him it is either low or high grade. Hence I did BCG. With tumors coming back, at least in this country most will recommend BCG.

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.
The following user(s) said Thank You: Nicke

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5 years 8 months ago #45442 by Nicke
Thank you for the reply. You do confirm more or less my own thoughts.

You are right. Treatment options vary from country to country, but also from hospital and hospital. For instance, one dose Mitomycin, immediately after a TURB is not used at my hospital, and also not at most of other hospitals in Scandinavia, but some hospitals use it.

For intermediate risk BC, which I now have, the national guidelines here, as I have understod, recommend Mitomycin as a first option, and BCG as a second option. The consensus here is the same. BCG is better than Mitomycin, but considering the side effects, BCG is first option only for high risk BC.

You are right. You are not a doctor, but you have the experience that most doctors do not have, you have been there, you know how it is to have BC, and you have gone through the BCG treatment. Your thought is appreciated and valuable.

Yes, I will let you know what we decide do go for. In the end I guess the doctor will make the decision.

Niklas

12-12 Diagnosis
13-1 Turb TAG1
13-5 Turb Ta low grade, multiple
13-10 Turb TaG2, multiple
13-11 Mitomycin 8 weeks + 6 month
15-01 Turb

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