Thanks for the response which you gave and thanks for the information Alan. Your advise related to the disease is really great and satisfactory. I really really appreciate both of you. May God bless you both.
Regarding the Urine infections and puss cell, yes , we have done urine culture and found no culture growth for any bacterium. Doc said its a good news as we were suspecting some specific bacteria that we can treat. But it was not present. Doctor said its not infection which we see in the puss cells. Its BCG doing its work and its good.
I am very close to my father so want to get more reliable information. I researched a lot and found that SWOG protocol is the most effective one. I cannot say my Dad will complete it or not but we have to try and give him most of it either delaying or lowering the dose( 40ml only).
I hope and pray that all here onboard should never get this disease again. And I pray my father to get cured.
Thanks Again Sara and Alan
Alan has given you a very good summary of a lot of BCG information. I will just add a few of my thoughts.
From what you described it would appear that your father had a bladder infection (puss cells) after the 4th instillation of BCG. This could cause a lot of the symptoms he has as well as BCG. Did the doctor identify the bacteria causing this infection and treat it? And, of course, they never administer BCG during an active bladder infection.
Even if your dad doesn't have any more BCG, he did have four treatments and showed a real response. Therefore, he has already received benefit from it
Your father's diagnosis was a relatively good one as far as bladder cancer goes. Even if he doesn't have any more BCG he has a good chance of never having any more signs of it. It would be especially important for him to have exams about every three months for a while to be sure that it hasn't returned.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Side effects are normally cumulative on BCG. The good news is it is often a sign of it working.
After 4 or 5 treatments we have seen a few that have had to stop but, they must have had some response as the last time I saw them post they were all ok. Also, there are many protocols on how many inductions are needed. For some reason, my URO did 6 weekly, 6 weeks off then another 6. Caution applies here as everyone's case is different. My tumor was caught early and was small. His thought process was that with every treatment and scope you still invite potential problems being "invasive" procedures. As a result he deviated from the SWOCG treatment you appear to be on (Dr. Lamm the original Doc 40+ years ago that spearheaded this treatment of BCG). I have read about the 6 +3 every 3 months leading to 3 at 6 months after a couple of years tapering to a finish. VERY few patients can tolerate and complete this regimen. I have read about others doing once a month for 12 or 24 months. So, I would not despair in your Dad's situation. Pat yourself on the back as being a wonderful part of the family and caregiver! It is important.
Last thought. MANY posters have talked with their URO about 1/2, 1/3 1/4 even 1/10 strength of dosage as side effects happen and appear to do well with less. Perhaps a reduction in this appears to be in order in discussion with the Doc.
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.
My Dad has been diagnosed for High Grade papillary carcinoma with 20 % HG and rest Low grade bladder tumor. Pathology report says
No Invasion to Lamina Propria and Deep Muscles
Our treatment plan was initial TURBT which removed all the tumor. Urologist took the sample of deep muscles of bladder and prostrate as well to confirm that there is no invasion to surrounding organs. All came out to be negative.
Following TURBT mitomycin C was induced within 24hrs of TURBT.
Doctor suggested BCG for 6 weeks but due to high side effects , we completed only 4 doses. By the end of 4th instillation frequency was very high and burning sensation was on peak. Also Urine test revealed puss cells 40-50 , RBC and blood and proteins as well.
Urologist suggested delay in BCG instillation and advised that we can adjust the remaining two BCG in the maintenance therapy. Let him heal and recover.
My farther is in recovery mode now and frequency and burning also subsided. But Urine infection is still the same. Once he drinks more water , Urine becomes clear with less infection.
Need some advise on below:
1. Is this ca really unmanageable and should I expect that my father will be cured one day?
2. Can I take him to some other reputed place where the medical facility is advance as I belong to a part of world which has substandard Medical Facilities.
3. Can I expect that my father can live a long life after being diagnosed with bladder ca.?
Please advise , I will really really appreciate some advises here
I have been new to this forum and had recently posted by father case on to this forum. Got the reply from Alan as well. Thanks to him.
As of now my father finished 4 doses of induction course and side effect did not allow us to make the remaining two , as Doc said we should wait for side effect to subside. My father is recovering now from those side effects. Now all family is trying to make him ready and prepared for the maintenance doses after two months. My concern related to the maintenance therapy are below and I will be really obliged if I get them clarified by Sara and Alan
1. With the induction doses we came to know what are the severe side effects to my father and it was urine frequency and burning sensation. Does that mean he will have same side effect in the maintenance doses as well? Could it be more than this like high fever and other severe infection other than UTI?
2. As of now he still has side effect but much reduced. Will the next dose of BCG increase the same and do we again need to stop BCG or reducing the dose ( 80ml to 40ml) will make some difference?
3. Instead of having BCG every 3 months for 3 weeks, can we have one BCG every month for 12 months. This was its easy to tolerate and i came across one study where it was tried to reduce the side effects.
4. Are the first two maintenance courses after 3 and 6 months more aggressive as the interval between them is only 3 months while 12 , 18, 24 , 30 & 36 has 6 months in between?
5. How can we reduce the side effect of frequency and burning to minimum?
I would appreciate the replies for above
Thanks in advance