Home Forums All Categories Non Invasive Bladder Cancer Is this a BCG side effect?

  • Is this a BCG side effect?

    Posted by cljjlk on January 14, 2010 at 1:12 am

    As we all do, we turn to our group when something happens that we don’t understand. I’m reaching out to see if anyone has had what I’m experiencing today and if so what was done. I started my second round of 6 weeks treatment of BCG after my latest TURBT found a TAG3 (high grade) tumor. Yesterday the procedure went as it had in the past and the side effects last night was the normal (fatigue, body aches, slight fever and urethra discharge). After a good night sleep I got up and was preparing to go to the office when I experienced lower back weakness that progressively turned into severe pain. So severe that it was almost impossible to stand or walk. I called my URO when his office opened. He sent me to the ER where they took x-rays of the lower back. This revealed nothing and I was sent home with pain meds and muscle relaxers. The medication has lowered the pain so it is somewhat tolerable, but I continue to suffer. My URO stated that he has never had a patient experience this type of side effect, but he said if was reasonable, that the immune system triggered an existing condition. I have had back pain from over doing sports or manual work in the past, but nothing like this.

    So the question, has anyone experienced or heard of the lower back going into muscle spasms or severe irritation? I looked around on the internet and found a couple of places that stated that if you experienced back or joint pain, to notify your doctor. However, I didn’t find anything that this was a common side effect. My URO contacted Dr. Lamb’s office to consult with him. Hopefully this is something that will not stop my treatments. Perhaps going to a lower dose, will moderate the reactions. Otherwise, I really hate the thought of having to give up on the BCG.

    As always, I appreciate your opinions, your experiences and support.

    Thanks,

    Chuck :unsure:


    dx – Aug 2005
    Five reoccurences (last 12/09 Ta high grade)
    BCG Started 10/09 (2 6wk treatment)
    BCG Maintenance started 4/10
    mmc replied 15 years ago 8 Members · 9 Replies
  • 9 Replies
  • mmc's avatar

    mmc

    Member
    January 31, 2010 at 1:04 pm

    Chuck,

    If you have had multiple recurrences of high grade, it is NOT too early to get that 2nd opinion from a uro at a major bladder cancer center.

    You may want to consider getting that follow up TURB at the bladder cancer center (bcc).

    Doesn’t mean you have to change where you get your BCG treatments if the bcc doc agrees with the treatment plan.

    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.
  • cljjlk's avatar

    cljjlk

    Member
    January 28, 2010 at 8:06 pm

    Thanks everyone for the advise. I’m a little premature on getting that 2nd opinion, but I wanted to be ready (if necessary) to make the request. I had my final BCG teatment this week. I think we are waiting either 6 or 9 weeks and then do another TURBT. Side effects were no worse this time than the first series. Hopefully the BCG worked this time. If not it will be the third reoccurence in six months. The last two were high grade (TaG3). I’m very much trying to keep a positive attitude, but you warriors know the helpless feeling while you wait. Again, thanks for your advice and suport.
    Chuck :unsure:


    dx – Aug 2005
    Five reoccurences (last 12/09 Ta high grade)
    BCG Started 10/09 (2 6wk treatment)
    BCG Maintenance started 4/10
  • 's avatar

    Guest
    January 26, 2010 at 5:57 pm

    a top uro/surgeon well respected in the field of urology is
    Dr. Mark Soloway in Miami..
    http://urology.med.miami.edu/x14.xml?id=35277
    Pat

  • nix's avatar

    nix

    Member
    January 25, 2010 at 9:04 pm

    I am sure JH is the place to go, but if you want a second opinion near home, I go to Moffitt. Right now my Uro is Dr Wade Sexton. I do like him, but I have gone to several doctors for second opinions during my journey through BC.

    Nix


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
  • cynthia's avatar

    cynthia

    Administrator
    January 25, 2010 at 7:56 pm

    Joey got in there before I did, so ditto.

    contact information.

    http://urology.jhu.edu/markschoenberg/index.php


    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
  • joey's avatar

    joey

    Member
    January 25, 2010 at 4:39 pm

    I am being followed at Johns Hopkins by Dr. Schoenberg who I like alot. JHU was the #1 Urology hospital last year. He is the head of Urology/Oncology. He also does a lot or research in the lab besides cystoscopy and RC’s.

    Joey

  • cljjlk's avatar

    cljjlk

    Member
    January 25, 2010 at 2:12 pm

    Just to update you on my situation. After several days of pain, it was determined that the root cause was ciatica. Although not directly related to the BCG treatment, both my Urologist and Dr. Lamb stated that the surge in the immune system might have triggered an existing condition. In any case, Dr. Lamb suggested and my Urologist concurred to treat me as if I had a reaction. We went to one-third dosage and I will only have three treatments instead of the normal six.

    Dr. Lamb told my Urologist that one of his studies showed that going with only three dosages at the reduced dosage had a better results (for reoccurrence) [65% vs. 45%] than giving 6 treatments at the reduced dosage. That seems strange to me, but as we know, Dr. Lamb is the expert. Has anyone heard of this before?

    I know I am being pessimistic, but if the following TURBT still finds active tumors, then I think I am going to seek that second opinion for further treatment. I have had one series of Mitomycin and two of BCG. I acknowledge that some of you had much more before obtaining positive results, but since my tumors seem to have advanced to high grade (TaG3) and I had two reoccurrences in less than six months, I’m getting a little “gun shy”. So my question: if you were going for a second opinion, where would you go? I live in SE Florida, but traveling is not an obstacle for me. We have a branch of the Cleveland Clinic not too far from my home. We have the Moffitt Center in Tampa and also a branch of Mayo Clinic in Jacksonville. I wouldn’t be averse to going to Baltimore to John Hopkins either. Your thoughts would be appreciated.
    :unsure:


    dx – Aug 2005
    Five reoccurences (last 12/09 Ta high grade)
    BCG Started 10/09 (2 6wk treatment)
    BCG Maintenance started 4/10
  • sara.anne's avatar

    sara.anne

    Member
    January 15, 2010 at 2:01 am

    I think you have a great urologist. He is willing to consider new things and to consult with someone with even more experience! Congrats!! AND I hope that this condition clears up for you pronto.

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • Mt bk's avatar

    Mt bk

    Member
    January 14, 2010 at 6:02 pm

    The side-effects I’ve had from bcg are slight (fever, sore muscles, joint pain) and they dissipate after a few days. My bladder and urethra are always a wreck for weeks though. I keep on the advil when I’m feeling the effects. I hope things clear up for you.

    Steve

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