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  • May stop all BCG’s.

    Posted by Bill Jr on October 8, 2009 at 1:08 am

    :S I guess I am one of the pathetic few who have horrific side effects with BCG-treatments. I have had the 1st 6, then the 1st 3 maintenance treatments, for a total of 9. Number 7 was at the point of unbearable (pain and bleeding {clots the size of quarters}). Number 8, they went to a 1/3-dose. The only improvement was no clots, same pain/bleeding. Number 9, the prostate was so irritated that they like to never got the catheter thru the prostate (the cath wanted to collapse on itself). So, when they finally got the cath thru the prostate, the pain was so great, I thought I was going to pass out.

    I called the Uro-office 4-times since May 09 (TUR) due to Pain/bleeding (they only returned 1 of the 4 calls). I have already had one world-class prostate-infection. This morning (10-days since BCG #9) I woke up to pain and frequency. I do not know if it is a bladder or prostate infection or WHAT? I would call the Uro, but I know they will not return the call. OH! All Uro’s in town are in the same GROUP, which is now owned by the Corp which owns both Hospitals in town.

    I have another Cysto the first week of Nov.

    At this point I am having a difficult time deciding if I will continue any maintenance BCG-treatments in Jan 2010! I will however, continue all Cysto’s.


    62
    Turbt (May 09)
    T1 High grade
    Began BCG June 09 (every 3-mo for next 2-yrs)
    Cynthia replied 13 years, 10 months ago 6 Members · 6 Replies
  • 6 Replies
  • cynthia's avatar

    cynthia

    Administrator
    April 10, 2011 at 1:46 am

    Jake, A Urologist who some have called the father of BCG named Dr. Donald Lamm has reported reductions of BCG being used with success. Here is a report from the European Urology done in ,06. It is sometimes helpful to print out studies to take with you to discuss with your doctor.

    http://www.europeanurology.com/article/S1569-9056(06)00142-4/abstract

    I am sorry you are here with us but welcome.


    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
  • Jakez's avatar

    Jakez

    Member
    April 10, 2011 at 1:32 am

    I am brand new here and glad I found this forum…

    Bill, I am also one of the pathetic few who have horrific side effects from bcg. Your symptoms sound just like what I am experiencing right now.

    First surgery was Feb ’09 followed closely by 6 weeks of bcg. It was a tough summer (had to stand while driving the boat!). I always thought it was the surgery that caused my discomfort that summer but now I’m thinking it might have been the bcg.

    All the 3 month cystos checked out ok but my uro would keep saying he was keeping an eye on one spot… see ya in 3 months.
    After the last cysto (6 months after that I was hoping) he decided to biopsy that spot and results indicated more surgery, which occurred on 3/1/11. Two weeks later bcg’s began. This time the bcg’s were administered by others in the same group and after asking the previous practitioner, I convinced her to use a #12 instead of #16 cath as the first two appts. were brutal getting past the prostate.

    The 12 cath was much better but the side effects this time are just like Bill’s, lots of spasms and bleeding (I don’t remember major bleeding issues 2 years ago). This thread has really got me thinking, I wasn’t aware, for instance of different bcg doses and that’s just one of the many questions I will ask as a result of visiting this forum.

  • bill-jr's avatar

    bill-jr

    Member
    October 8, 2009 at 11:07 pm

    mmc wrote:

    Bill,

    Sure sounds like enough crap going on that you should STRONGLY consider going someplace better. I know you mentioned politics of the doctors and your family but it is worth it?

    Sure doesn’t sound like it to me. Also seems like if a family member is a doctor that they would advise you to do the same thing we keep advising. Also seems like they should be able to handle themselves in a situation where crappy doctors try to cause an issue over you getting better medical treatment.

    If it is a prostate infection, you should ask about Levaquin for a 30 day dose. It takes a LONG time of antibiotics to get rid of a prostate infection.

    If the prostate still causes issues with the catheter, then inquire about getting a TUIP. They make an incision in the prostate to loosen it up in the area of you urethra. It’s a pretty common surgery for enlarged prostate, which may be a contributing factor in addition to the infection.

    You REALLY, REALLY, REALLY want to continue the BCG if at all possible. While I’ve got a neobladder and am doing fine with it, I can tell you without a doubt that I would have rather been able to take the BCG treatments and still have a bladder.

    Finally, you can even go down to a 1/10th dose. Dr. Lamm says there is no evidence of reduced efficacy even with that dose. Send him a note to ask on his web site.

    All we can do is advise based on what we know. It’s your decision to make.

    I do wish you the best though!
    Mike

    :S When I had my TUR, the Uro did perform a slice biopsy of my prostate (at least he said he did) and told me once I healed, that I should see an improvement in symptoms from BPH. I did for about 2-months. Now, its near impossible to get a #14-cathe thru to my bladder. They will not use a smaller, as they say it interfers with the admin of the BCG.

    Anyway, to day I had my yearly with my GP. The Uro had not notified him of my cancer. Anyway, he did an in-office “urine” test, which indicated a infection. He is going to “culture it” and let me know if anything turns up.

    Also, my wife (OR-Mgr) crossed paths with my Uro and he finally sent me an antibiotic to take 2/day for 14-days.

    Two BCG schedules ( first 6 and first 3) and a World-Class infection after each.

    Again folks, my quality of life w/BCG is horrible and the recovery between is Long & Drawn-out, therefore, I am still not sure I will continue in Jan, although I will continue the Cysto’s every 3-months.

    And yes, I will look for a BCG specialist in Roanoke, VA and in Charlottsville, VA (UVA).

    Thanks for all the advice, as I do read and study all of it.


    62
    Turbt (May 09)
    T1 High grade
    Began BCG June 09 (every 3-mo for next 2-yrs)
  • mmc's avatar

    mmc

    Member
    October 8, 2009 at 8:18 pm

    Bill,

    Sure sounds like enough crap going on that you should STRONGLY consider going someplace better. I know you mentioned politics of the doctors and your family but it is worth it?

    Sure doesn’t sound like it to me. Also seems like if a family member is a doctor that they would advise you to do the same thing we keep advising. Also seems like they should be able to handle themselves in a situation where crappy doctors try to cause an issue over you getting better medical treatment.

    If it is a prostate infection, you should ask about Levaquin for a 30 day dose. It takes a LONG time of antibiotics to get rid of a prostate infection.

    If the prostate still causes issues with the catheter, then inquire about getting a TUIP. They make an incision in the prostate to loosen it up in the area of you urethra. It’s a pretty common surgery for enlarged prostate, which may be a contributing factor in addition to the infection.

    You REALLY, REALLY, REALLY want to continue the BCG if at all possible. While I’ve got a neobladder and am doing fine with it, I can tell you without a doubt that I would have rather been able to take the BCG treatments and still have a bladder.

    Finally, you can even go down to a 1/10th dose. Dr. Lamm says there is no evidence of reduced efficacy even with that dose. Send him a note to ask on his web site.

    All we can do is advise based on what we know. It’s your decision to make.

    I do wish you the best though!
    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.
  • melodie's avatar

    melodie

    Member
    October 8, 2009 at 6:44 pm

    Dear Bill, Our mutual friends, Donna & Bruce, think the world of you, and goodness knows, when I get a chance to return to my home state and visit, I want to meet you and find you healthy and strong.

    Sooooooooooooooooooo, PLEASE, PLEASE, PLEASE, get an appt. with a most excellent uro. at a medical establishment that excels in handling BC situations. I believe Pat gave you a list earlier on….if not, I’m sure she would be pleased to do so now.

    Anyone who doesn’t return urgent phone calls, and in my mind, intense pain is an urgent concern, is either too busy or just unprofessional….either way, you don’t want to deal with that type of medical office. :angry: No! No! No! ABSOLUTELY NOT! Yes, I recall you are related to two medical professionals but that doesn’t mean everyone else there is anywhere as good as what you now need in the way of treatment.

    Sorry if I am coming on a bit srong here but this is YOUR LIFE we are talking about here. YOU are a special person who needs some very special attention and care and I don’t see it happening. I’ll be very frank with you and tell you that we have lost folks on this forum who did not take our comments seriously enough. It always disturbs me when I feel like our warnings are not taken to heart. We care greatly about what happens to our friends on this forum. Please reconsider going out of town, and maybe even going out of state if necessary. You continue to be in my prayers. I’ll pray God gives you the warrior attitude cause you need to get tough with the medical profession!

    Yes, I’m scolding you and hugging you, all at the same time. ;)


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • lhpdogs's avatar

    lhpdogs

    Member
    October 8, 2009 at 6:23 pm

    Oh Bill, so sorry! But I think you need to look for a Uro in the NEXT town. You need to trust that your health care providers will be there for you when you need them, not three days later when they decide to return messages. I think it would make the whole experience more tolerable. Best of luck to you. (I have my 2nd BCG treatment tomorrow, and had much better luck than you with it)…

    Lauren


    TaG1 12/05
    3 recurrences
    BCG started 9/09

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