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  • BCG Maintenance ?

    Posted by jtroiano on August 12, 2009 at 2:38 am

    I am on my 3 week BCG maintenance. Last Cysto looked good.

    It was realy bad this last time. Fever, a lot of blood and other stuff. THe fever cleared the next morning. Feeling the urge to pee all the time. Every hour the first night.

    Going again this thursday.

    Any tips to make it easier??

    I hear it gets worse every time.

    Also my dentist said my gums were red in looked invected. I floss every day and brush. Any thing to do with BCG?

    Thanks of the input.

    Jon

    jtroiano replied 15 years, 5 months ago 8 Members · 20 Replies
  • 20 Replies
  • jtroiano's avatar

    jtroiano

    Member
    August 23, 2009 at 3:03 pm

    Well, I drank my water and it helps a little. Fever was up to 101.8. It was almost gone in the morning. Felt tons better. Bladder is still sore three days later but getting better every day. Going for check up in september and then another round of BCG in three months. I will defenetly tell the Dr about the temp. It seems to get just a little higher every time.

    Thanks for listening.

    Jon

  • jtroiano's avatar

    jtroiano

    Member
    August 18, 2009 at 2:17 am

    I don’t mean anything bad, just hate to see people in pain. I do come to this site because it helps, you all help. Its the best place I’ve found. I will get through it. Just get bumbed sometimes. I always say it could be a lot worse.

    Thanks for the support.

    I’ll let you all know how my treatment goes next week. Probably start drinking my gallon of water 1/2 before it ends.

    Jon T

  • moonerj's avatar

    moonerj

    Member
    August 17, 2009 at 10:41 pm

    Hi Jon

    I have completed my BCG maintenance treatments and have been cancer free for 20 months. Having had bladder cancer sucks, and so do the BCG treatments.
    I have learned to live with this health issue, because of this site and another I frequent. These people turned me around mentally 180 degrees.
    I found people with something in common, who shared their experiences, did research for me, taught me to live with blc. I now have many friends throughout the world who share in this disease with me.
    I am just so grateful my disease was caught early and BCG seems to have kept the tumors away. Is their a quick fix for bladder cancer, darn I wish there was. But someday there will be. Since my attitude has changed concerning blc,I now wish to give back to people what was given to me by fellow warriors. If I can assist someone by sharing my bladder cancer journey, I feel I am doing for them what has been done for me. I can’t change that I was dx with bladder cancer. But I can change my outlook and feel lucky that sites like ABLCS exist.
    I wish you all the best, and hope that you can make peace with this disease.
    Jack


    TA Grade 1
    3 Turbts
    30 BCG Treatments
    Cancer Free since Nov 2007
  • 's avatar

    Guest
    August 17, 2009 at 5:46 pm

    Jon….
    I’m so sorry you get depressed reading on this site but you have to remember most of the people here are in some stage of treatment or have just been recently diagnosed and are seeking kindred souls with similar experiences and hopefully good knowledge. Its a good place to start. I remember at my first diagnosis and wandering around the internet and reading stats and i was terrified and had not yet realized that stats do not always take into account the skill of the surgeon, the hospital..etc. I was so glad to have found the predessor to ABLCS at web/cafe.
    Just keep in mind that there are about 500,000 of us who are survivors walking around.
    Take what you can use and pitch the rest.
    Pat

  • nix's avatar

    nix

    Member
    August 17, 2009 at 3:38 pm

    I have written to Dr. Lamm several times, in the past, with different concerns, and as always, he has given me guidance with BCG Treatments. Hopefully, this information will be helpful you.
    Below are a few excerpts from some of the past emails.

    It is important to avoid any carcinogen exposure. While epidemiologic
    studies have not confirmed the carcinogenicity of artificial sweeteners, I
    would recommend avoiding excess use. Anecdotally, some patients with a
    history intractable tumor recurrence report remaining tumor free after
    discontinuing soft drinks. Second hand smoke, pesticides, diesel fuel and
    organic chemical exposure, as well as excessive exposure to dyes should
    also be avoided.
    Don Lamm, MD
    Reducing BCG does not generally reduce efficacy, in fact there is evidence
    it can increase it. I would reduce your dose to less than 1/3 or so.
    You can hold it for a short time as well to reduce side effects.
    Don Lamm, MD
    We go as low as 1%. You can also reduce retention to 30 minutes or less.
    I also sometimes give heat inactivated BCG to those who do not tolerate
    live BCG.
    Don Lamm, MD

    Nix


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

    jtroiano

    Member
    August 17, 2009 at 2:04 pm

    THank you Patricia for the info. The worst is over in about 18 hours. If I can keep the reaction about the same I can deal with it. The water really helped..

    I have one more week and then I’m off for 6 months. I usually go into denial and not think about it. I just want to be healthy. I have had a few close friends with cancer and even one friend that lost her 6 year old daughter to it. I went to the funeral. I’m a car mechanic and I love to fix things. So when I can fix this it bothers me even more. My best friend even had it. No colon anymore, or very little. Just frustrated. I read on here and get depressed, so I’m don’t read to much.

    Thanks again for listening.

    Oh ya and my wife started smoking a year ago.

    Jon T

  • 's avatar

    Guest
    August 16, 2009 at 6:51 pm

    Also….regarding BCG….
    http://www.rxlist.com/theracys-drug.htm
    if you’re reacting after 72 hrs….really see an infectious disease specialist. I see this happen alllllll the time.
    Pat

  • 's avatar

    Guest
    August 16, 2009 at 6:40 pm

    Management of BCG non-responders…..results of a study by top cancer centers and uro’s….lamm, Herr, Konety……etc….This is very interesting but i doubt that it is used outside of a major cancer center or university setting.
    http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2684230
    Pat

  • blb's avatar

    blb

    Member
    August 16, 2009 at 5:49 pm

    Jon,
    I too have been told that the worst your side effects the better it is working. I had a very bad reaction to BCG after my 4th treatment – it affected by joints – however – in discussions with my urgo and e-mail from Dr. Lamm – should I need more BCG treatment we are going to go at a lesser dose and I have faith in that. BCG is suppose to be the most effective, I know the side effects can be bad – but hang in there – it is worth it. I go again for a scope on 9/1 and am hoping for the good news! Keep the faith.
    Bobbi

  • jtroiano's avatar

    jtroiano

    Member
    August 15, 2009 at 1:29 pm

    From everything I’ve read my reaction is totally normal. The nurse said that the reaction is a good sign and if Dr Lamm says so to then I am going to keep going full strength as long as I can stand it.

    I think the water helps to shorten the symptoms. I will see if it gets worse next week and let everyone know. But this week was defenetly better than last.

    Thanks for all the input.

    Jon

  • mmc's avatar

    mmc

    Member
    August 15, 2009 at 11:52 am

    Fever under 100 is pretty common and Dr. Lamm had told me (via email) that strong reactions like that generally are accompanied by better outcomes. You may want to write to Dr Lamm on his website.

    Over 101 (if I recall correctly) can be a different story so you do want to keep close track. In my case the fever exceed 102 so they stopped my bcg even though Dr. Lamm would have proceeded with a reduced strength of BCG.

    Dr Lamm is really the top guy in terms of research on BCG so I’d really suggest getting his opinion and relaying that to your uro. Reduced dose strength has not been shown to result in reduced efficacy so it may be worth exploring that option.

    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.
  • michstate89's avatar

    michstate89

    Member
    August 15, 2009 at 2:14 am

    Jon,

    You should email Dr. Lamm with your side-effects – or review his protocol. He believes BCG is still effective at diluted doses.

    Ross


    Ross M
    TaG1 March 06
    Recurrence Jan 07
    BCG Maintenance after 6 week treatment
  • jtroiano's avatar

    jtroiano

    Member
    August 14, 2009 at 1:13 pm

    Update: They always check my urine before.

    So Thursday at about 9:30 I had my treatment. 11:15 I started drinking water. Pretty much sat on the toilet for 2 more hours but kept drinking. The bleeding and clots stopped after about 3 hours. Last time all night. I drank 7/8th of the gallon of water and then the fever hit. I have to say the water helped the pain and blood. Still have a little fever this morning but feel better than last week.

    Jon T

  • doninrichmond's avatar

    doninrichmond

    Member
    August 13, 2009 at 10:19 pm

    :S Yep! Know what you mean. I have only had the 1st 6-BCG’s. My side effects, were urgency, painful urination, extreme-fatigue. The side effects were progressive. My treatments were very difficult but manageable.
    I did bleed like the devil after #6. But my NP who administers the BCG said that bleeding would be expected and I should not worry :side: My urine is checked prior to any BCG treatment.

    2-weeks after #6, I got a “world class” prostste infection and am on antibiotics 2/day for 28-days. I get a 7-day break and start maintenance BCG’s. However after 2-wks on antibiotics I have no relief at the prostate.

    I wish you all the best my friend, as we both fight this dreaded disease.:)


    Bill Jr
    Tumor removed 5/4/09
    “T1 high-grade”
    Started “BCG” 5/21/09
    Have a 2-yr treatment schedule
  • jtroiano's avatar

    jtroiano

    Member
    August 13, 2009 at 2:59 am

    Thanks for the input. I guess I just have to suck it up. I think I’m going drink a ton of water tomarrow and see if it helps.
    This will be my 8th.

    Jon

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