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  • Cysto shows no growths

    Posted by on June 30, 2009 at 12:01 am

    Had my third cysto since diagnosis last April. Unlike the one in Jan it was clear.:cheer: :cheer: :cheer: That means no BCG treatments!!:cheer: :cheer: :cheer: :cheer: :cheer: :cheer:
    I’m still recovering from the last treatments in Feb/Mar. I got advice here about having the 6th treatment which I went ahead with. I exchanged messages with Slabman for a while as we were both suffering Joint/muscle pain. I’ve had Xrays of shoulders and hips plus a nerve study. Nerve study showed irritated nerve endings. I’ve been to neurologist, physical med dr and finally a rheumotologist. He has prescribed neurontin and it seems to be helping. The terrible hip spasms have subsided a lot.
    Anyway, my uruo says this couldn’t have been caused by BCG as it’s not absorbed in the system. I’ve found an NIH article I intend to send him plus it’s listed as a possible side effect in the BCG circular. If you know of
    anything else that might convince him please let me know because if and when I have more treatments I think I the BCG should be weakened.
    I apologize for rattling.
    Roberta

    slabman replied 15 years, 6 months ago 5 Members · 7 Replies
  • 7 Replies
  • slabman's avatar

    slabman

    Member
    July 19, 2009 at 3:14 am

    Berta, I can agree with all those likely side effects Pat mentioned. The problem here seems to be a lack of education amongst the Docs administering it. I know mine doesn’t seem to think there are any of these and told me so….but I still know otherwise…….

    I can report that those arthritic side effects with treatments #13-15 didn’t pose anywhere near the same discomfort as treatments #6-12. Got through it pretty well and now my arthritic back symptoms seem to get better all the time, so I remain optimistic. But I still have another issue which I will post separately so as to not hijack this thread. Hang in there….hopefully things will get better.


    Bob
    T1 G3
    Age 66
    DX April 2008
    TURB April 2008
    Last BCG (#15) April 2009
  • 's avatar

    Guest
    July 7, 2009 at 4:25 pm

    I have contacted Dr. Lamm in the past and will probably do so again. Thanks for your advice.

  • 's avatar

    Guest
    July 7, 2009 at 4:23 pm

    Thanks Pat. I knew you would have info for me.

  • rockyiss's avatar

    rockyiss

    Member
    July 2, 2009 at 2:56 am

    hi Roberta, I am really glad to hear your news, what a relief for you.

    I hope all goes well with the rest of it. I took neurontin for awhile but it gave me headaches so
    I stopped taking it. I had a recurr but they just took it out , no bcg which was fine with me . I am on a wait and watch and see. Rocky

  • gracie's avatar

    gracie

    Member
    June 30, 2009 at 4:29 pm

    There is no argument that BCG can have serious side effects. It may be helpful to email Dr. Lamm who is the guru for BCG. His web-site is BCGOncology.com. You can also email him.

    When I was getting BCG treatments I consulted with him. He monitored my side effects and recommended reduced amounts. I took his recommendations to my doctor who had no problems at all in following them. By the way – most doctors follow the protocol established by Dr. Lamm.

    If you are symptomatic I would strongly suggest that you ask the questions. But ask them of someone who is experienced with this specialized treatment.

    Dr. Lamm is your man.

    Best,
    Gracie

  • 's avatar

    Guest
    June 30, 2009 at 1:51 am

    I wouldn’t go the BCG route again…….
    Data from Postmarketing Experience
    These events were reported voluntarily from a population of uncertain size, it is not possible to reliably calculate their frequencies.

    Symptomatic granulomatous prostatitis, epididymo-orchitis, and renal abscess associated with administration of intravesical BCG have been reported.

    Ocular symptoms (including uveitis, conjunctivitis, iritis, keratitis, granulomatous choreoretinitis) alone, or in combination with joint symptoms (arthritis or arthralgia), urinary symptoms and/or skin rash, have been reported following administration of intravesical BCG. The risk appears to be elevated among patients who are positive for HLA-B27. (13)

    Skin rash, arthralgia and migratory arthritis may be allergic reactions.

    Serious infectious complications of intravesical BCG have been reported. The most serious infectious complication of BCG is disseminated sepsis associated with death. In addition, BCG infections have been reported in eye, lung, liver, bone, bone marrow, kidney, regional lymph nodes, peritoneum and prostate in patients who have received intravesical BCG. Some male genitourinary tract infections (orchitis/epididymitis) have been refractory to multiple drug antimycobacterial therapy and required orchiectomy.

    Treatment ofAdverse Reactions
    If a patient develops persistent fever or experiences an acute febrile illness consistent with BCG infection, BCG instillations should be permanently discontinued, the patient immediately evaluated and treated for BCG infection and an infectious disease consultation sought. (See WARNINGS and PRECAUTIONS.) Treatment with two or more antimycobacterial agents should be initiated promptly while diagnostic evaluation, including cultures, is conducted. Negative cultures do not necessarily rule out infection. TheraCys is sensitive to the most commonly used antimycobacterial agents (isoniazid, rifampin and ethambutol). TheraCys is not sensitive to pyrazinamide. (14)

    This comes with the packaging ..maybe your uro should read it.
    Pat

  • mmc's avatar

    mmc

    Member
    June 30, 2009 at 1:08 am

    Congrats on the “All Clear”! Great news.

    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.

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