Forum Replies Created

Page 1 of 195
1 2 … 195

  • sara.anne

    Member
    February 13, 2024 at 5:15 pm in reply to: Carcinoma In Situ diagnosis

    That is good news!!

    I am now almost 15 years from CIS diagnosis, BCG, etc.  Still getting CT-Urogram every five years and annual cystoscopy. 

    Keep up the good work!

    Sara Anne

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

  • sara.anne

    Member
    November 11, 2023 at 4:13 pm in reply to: Why not BCG after TURBT instead of only surveillance?

    BCG is very effective in preventing recurrence with HIGH GRADE non-invasive bladder cancer….not so much with low grade.  Since BCG is not without side effects, your urologist is correct in advising close surveillance for a while instead.

    Sara Anne

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

  • sara.anne

    Member
    November 10, 2023 at 5:04 pm in reply to: advice sought about AZO dosage

    Sorry to hear that the treatments are really getting to you.  You do have some options: 

    First, it is possible to have the dosage of BCG reduced significantly.  Dr. Donald Lamm, who was one of the early experts in the use of BCG in bladder cancer, suggested that as little as 1/10 the original dose could be effective.  When I ran into very uncomfortable side effects after multiple BCG treatments, my urologist reduced the dose to 1/3 the original.  Didn’t solve everything, but was more tolerable.

    Second, you have had a significant number of doses beyond the initial (usual) induction round of six.  Many urologists consider every one additional as great.  My urologist told me that many of his patients needed to drop out after varied multiple doses.  However, the effects of BCG in reducing the recurrence of bladder cancer where still evident.  

    You should discuss these possible options with your urologist.

    Sara Anne

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

  • sara.anne

    Member
    October 19, 2023 at 8:36 pm in reply to: Phase II clinical trial for GEM+CIS+Immunotherapy for MIBC

    Joe, once again, you have shared a very important article with us. Thank you! This clinical trial could be critical as long as they are very careful in selecting patients.

    Sara Anne

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

  • sara.anne

    Member
    September 18, 2023 at 3:27 pm in reply to: Phase 3 BRIDGE trial to compare GEM/DOC vs BCG

    Very interesting summary, Joe!  Thank you

    Sara Anne

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

  • sara.anne

    Member
    September 16, 2023 at 3:26 pm in reply to: Phase 3 BRIDGE trial to compare GEM/DOC vs BCG

    That is part of the question this trial is designed to answer.  They are comparing the currently most common dosage schedules of both.
    One might ask, instead, why are they giving BCG three weeks at a time for 30 months?  Is it because it is less effective?

    Sara Anne

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

  • sara.anne

    Member
    September 14, 2023 at 7:24 pm in reply to: Atypical cystology

    Hello, Cyndy!  

    I moved your post from “ChitChat” to this category where more people may see it and be able to comment.

    I assume from your post that the “atypical cells” were reported from urine cytology tests.  If that is so, you need to know that urine cytology tests often find atypical cells and this CAN be totally normal and not a sign of cancer. You need to discuss this finding with your urologist and find out if he/she considers this significant.

    Please let us know how this goes.

    Sara Anne

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

  • sara.anne

    Member
    September 5, 2023 at 5:22 pm in reply to: Biopsies Tomorrow

    I’m with you that waiting for the results is the worst part!  

    Will be thinking good thoughts and waiting with you for the outcome.  GOOD LUCK!

    Sara Anne

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

  • sara.anne

    Member
    September 4, 2023 at 3:18 pm in reply to: Phase 3 BRIDGE trial to compare GEM/DOC vs BCG

    Thank you for posting this, Joe!!  

    Usually the clinical trials that we see are rather specialized and don’t apply to many of us.  This one looks as if it would apply to a lot of us………….and the number of participating locations is amazing.  I hope that those of us waiting for BCG will investigate participating.

    Sara Anne

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

  • sara.anne

    Member
    August 18, 2023 at 8:11 pm in reply to: All clear for 12 years now

    Sorry to hear about your issues….I can truly sympathize!  I have a similar issue, but not from bladder cancer treatment.  I suffer from post-cholocystectomy syndrome which started about three months after emergency gallbladder surgery.  For me, Questran is a miracle drug but I do need to take it EVERY DAY.  The few times that something came up and I forgot have taught me to NEVER forget!!!

    Could it be that something other than the bladder cancer issues brought this on?  From all the postings I have read on this Forum, diarrhea is not a common problem.  I second Alan’s suggestion for a gastro consult.

    You will figure this out!!

    Sara Anne

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

  • sara.anne

    Member
    July 13, 2023 at 4:43 pm in reply to: All clear for 12 years now

    That is GREAT NEWS, Ann!  And it is wonderful to see an old friend visiting the Forum….

    I am 15+ years out and my Uro still wants annual visits.  He says “forever.”  I will comply.

    Sara Anne

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

  • sara.anne

    Member
    June 12, 2023 at 1:48 pm in reply to: Newbie

    Welcome, Barry!  I know you didn’t want to join us, but…..

    As for BCG.  It is practically a miracle for those of us with non-invasive high grade bladder cancer.  I was diagnosed over 15 years ago with CIS (carcinoma in situ) as well as papillary tumors.  Without BCG I would have, at best, lost my bladder.  However, I did the initial BCG induction series and then maintenance doses for almost two years.  Been cancer-free ever since.

    Yes, there are side effects from BCG but they are nothing compared to those from chemotherapy which would be necessary if the cancer spreads.  Most of these side effects are reactions of the immune system to BCG whose purpose is to stir up the immune system to fight the cancer.  Proof that it is working!  

    I would highly recommend continuing BCG treatments as prescribed by your doctor.  If they work, and they do for a large number of bladder cancer patients, it can be life-saving.

    Best of luck to you

    Sara Anne

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

  • sara.anne

    Member
    June 9, 2023 at 1:01 am in reply to: New to Forum. Blood in urine for years.

    I don’t have the exact statistics in front of me, but for a large majority of positive urinary microscopic blood results a reason is never found.  In fact, many primary care docs no longer do routine urinalyses, and this is one reason.  While it is a good idea to have this checked out it is unlikely to be related to bladder cancer.

    This is a bit confusing….urinary blood CAN BE a symptom of bladder cancer, but is usually caused by multiple other things instead.  Ironically I was diagnosed with bladder cancer and have NEVER had a positive for urinary blood!

    Sara Anne

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

  • sara.anne

    Member
    June 7, 2023 at 3:21 am in reply to: stoma leakage after Indiana pouch surgery

    You should check with the stoma nurse at the hospital where you had your surgery. They can usually give you the most help.

    Sara Anne

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

  • sara.anne

    Member
    June 5, 2023 at 4:00 pm in reply to: Can EBC-46 be effective for Non Invasive Bladder Cancer?

    This drug is in the very early stages of research.  It will be a while before we know if it is effective in many human tumors.  Let’s hope so.

    Sara Anne

    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
Page 1 of 195
1 2 … 195