Home Forums All Categories Non Invasive Bladder Cancer Number 4 of 6 BCG

  • Number 4 of 6 BCG

    Posted by Shacky73 on February 29, 2020 at 6:12 am

    Had number 4 of 6 induction BCG yesterday. I’m getting full dose Tokyo-172 via Prime Trial.

    Toughest yet! Peeing after holding in for bit over 2 hours (fell asleep) was painful. I was only going 25-50 ml for 6-7 hours and it hurt like hell. Urgency was off charts at times.

    Today got better and volume increase to 100-150.

    I was amazed at how much tissue was floated NGx in urinal today. Wasn’t really checking yesterday. Some clots too. All day into evening.

    Makes me feel like it’s doing its job!!!

    2 more to go.


    T1 Grade 3 with CIS
    Shacky73 replied 4 years, 8 months ago 4 Members · 12 Replies
  • 12 Replies
  • shacky73

    Member
    March 19, 2020 at 12:13 am

    I do have Urobel but MD said not to use. Perhaps because it has a anti inflammatory aspect?

    Hope your husband does well with Neobladder!


    T1 Grade 3 with CIS
  • Golfer

    Member
    March 17, 2020 at 1:19 pm

    My husband had a burning sensation after BCG treatments, and the urologist perscribed Uribel tablets that really helped. Be aware it turns the urine blue.

    Also, looked at the photo and it was mild in comparison to flushing out the neo-bladder after surgery. That is really gross ! I’ve been doing it twice a day for a week now since we got home from the hospital. Another week to go before follow up to see if neo-bladder healed for activation.

  • jack-r

    Member
    March 16, 2020 at 7:38 am

    Shacky73

    That’s the kind of photo that would send you running to the doctor, if you wern’t being treated already, and expecting this as a “side effect” of treatment.

    Hoping that BCG does the job for you. Not a barrel of laughs, but still the best chance of resolving the issue.

    Best
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • shacky73

    Member
    March 15, 2020 at 12:09 pm

    https://share.icloud.com/photos/0J3UWyw9_jkPlKZAnvEX-q94A

    Not for the faint of heart!


    T1 Grade 3 with CIS
  • regor

    Member
    March 14, 2020 at 3:56 pm

    Congrats on the Milestone !


    TURBT Jan 2019; Diag: CIS
    Induction BCG (Mar 19) /Maint BCG (Aug 19)
    TURBT Nov 2019; Diag: CIS
    Repeat Induction BCG – Jan 2020 Complete
  • shacky73

    Member
    March 14, 2020 at 3:46 pm

    Number 6 of 6 in the books!

    It was again very painful. Not constant but urgency off the charts, pain from muddle to end of stream, and small volumes which kill. The first 6 hours are the worse.

    When describing symptoms my treatment team felt I had infection. I was actually hoping that would be. The case and I could expect relief from antibiotics. Unfortunately culture came back negative.

    Nothing I can’t handle but glad I have some time before maintenance 3 weeks.

    Lots of tissue again for first 2 days in urine. Kind of proud of it. Would share picture if I could figure out how to attach.

    Now I have scope first week in May then the 3 week maintenance.


    T1 Grade 3 with CIS
  • shacky73

    Member
    March 7, 2020 at 10:40 pm

    Number 5 of 6 down. Pain on urgency same which is not good news. Forcing fluids and getting volume per pee up helped. But oh that pain. Starts on urgency then after flow starts it kills.

    The amount of tissue 1st and second day was impressive!!!

    I used heating pad (saw someone here suggest) and it seemed to help.

    One more to go for induction phase.


    T1 Grade 3 with CIS
  • regor

    Member
    March 2, 2020 at 1:04 pm

    [quote=”Shacky73″ post=59162]Had number 4 of 6 induction this week. Wow did I get a lot of tissue and some clots next day. I assume that means it’s working.[/quote]

    Good to hear your facing it and pushing through ;)


    TURBT Jan 2019; Diag: CIS
    Induction BCG (Mar 19) /Maint BCG (Aug 19)
    TURBT Nov 2019; Diag: CIS
    Repeat Induction BCG – Jan 2020 Complete
  • shacky73

    Member
    March 1, 2020 at 1:08 am

    For those not eating at the time here is a picture


    T1 Grade 3 with CIS
  • shacky73

    Member
    March 1, 2020 at 1:05 am

    Had number 4 of 6 induction this week. Wow did I get a lot of tissue and some clots next day. I assume that means it’s working.


    T1 Grade 3 with CIS
  • shacky73

    Member
    February 29, 2020 at 7:30 am

    I read good things about Connaught. Too bad it’s no longer available.

    And thanks for advice. Good luck with your treatment!!!


    T1 Grade 3 with CIS
  • jack-r

    Member
    February 29, 2020 at 6:54 am

    Shacky73
    Your BCG experience sounds similar to mine, and the effects can slowly increase.
    It helped me to know that the worst resolves in 12 to 14 hours after the first void.
    During those first hours it helped me to drink fluids, even with little return. Warm liquids (coffee) is my favorite.

    I would get comfortable in bed, and place a urinal to receive the few ml + clots & tissue, and put a hot towel or microwaved heat pad over the bladder and TRY to relax through the urgency. Some time in a hot shower, with pressure shifted to other parts of the bladder while standing was sometimes a help.

    I never quite figured out a pattern, but changing position – sometimes – seemed to help quite a bit, at least for a little while. I’m sure we are each different. I started on Connaught BCG and was switched to TICE BCG after 9 instillations.

    Hopefully, Tokyo 172 will do the trick.
    Best
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021

Sign In to reply.