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  • Gemzar/Gemcitabine side effects Male HELP!

    Posted by swarmy2007 on March 18, 2021 at 2:04 am

    4 yrs out T1-Hi Grade non muscle invasive. several TURBT and 2 1/2 yr on BCG treatments…. failed went on GEMZAR about 18 mos ago every 3 months with scope. No problem for long time now the discomfort after insertion is very tough and today failed my 2 hours and voided. Radiates out with bad cramps through out my pelvic area and real weak and confused rest of day. Afraid to tell DR for know I’m running outta chemical options. Just how sick and bad burning can I expect I should just “handle”, versus I’m in trouble?? Am old Vietnam Army vet and think pretty tough on these matters. Total BCG & Gemzar had about 45+ treatments since diagnosed. Got REAL sick hi temps on BCG and doctor saw it and killed that treatment how I got on Gemzar. Guess this circus sorta last only as long as I can tolerate treatments?? I can tolerate the pain it’s the not being able to prevent void with cramps during session beginning that is the big problem then the radiating burning thru entire pelvis for 2-3 days after.  Any tips, observations or links appreciated. 

    ff99 replied 3 years, 5 months ago 7 Members · 10 Replies
  • 10 Replies
  • ff99

    Member
    June 11, 2021 at 4:55 am

    In order to hold Gemzar as long as you want ask the nurse to clamp the penis after the instillation.
    Good luck.

  • ff99

    Member
    June 1, 2021 at 5:41 am

    if you are a male, ask the nurse to clamp your penis in order to be able to hold Gemzar for at long as you want.
    As far as pain, I don’t have a clue.
    Good luck.

  • jack-r

    Member
    May 21, 2021 at 7:00 am

    SWARMY2007,

    Welcome to the Five Year Treatment Club. Seems to be the point that constant treatment of recurring cancer starts to takes a bite out of optimism.

    You have been fighting the good fight, and you have been given a break from treating, but it does not feel like a win.  We want to be pleased, but there is doubt in our minds.

    What would it take for you to be celebrating a victory ? What could be done to erase the concern about the (frequently inaccurate) cytology ? What would let you call the round a “win” ?

    For me, it is a MRI or full system CT Scan. I want something beyond the limited ability of human vision to set a diagnosis these days.

    If you you know – or can express – what would give you the positive, supporting, info you are obviously seeking, talk to your doctor or care team. Their job it to treat your body and your spirit. Ask them to go the extra mile.

    Hang in there. We are survivors, and we are not done fighting.

    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
  • sara.anne

    Member
    May 20, 2021 at 7:29 pm

    Urine cytology tests are NOTORIOUS for giving false positive results.  Since your urologist just did a cystoscopy, and since you are on a 3-month recall, he no doubt thinks that there is no problem because he just checked you and besides he will be checking again in 3 months.

    He would not want to do another TURB unless he was pretty sure that there was something there.

    You will be fine

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • swarmy2007

    Member
    May 20, 2021 at 4:06 pm

    After 5 negative consecutive 3 month scope & cytology reports being negative just had scope and no visible tumors yet the cytology came back hi-grade urothelial present again. Emailed my Uro doctor and he’s not concerned see me next scope. So what…. says coming back and doctor just waits till tumors appear. All about the treatment never the cure. I am just really tired of living the life of cancer for for 4 years now life has been wrapped around treatment and in many ways not very pleasant. Guess I’m just a bit down today. God’s will.  

  • ff99

    Member
    May 20, 2021 at 4:27 am

    I agree with one-hour holding time. Two hours seems to be too long and might cause inflammation.
    Good luck.

  • jabeck79

    Member
    April 5, 2021 at 7:17 pm

    I am currently on monthly Gemcitbine/Docetaxel treatments.  I did 6 in 6 weeks in the beginning with no side effects or bladder spasms.  However, the once a month treatments have been difficult with spasms, pain, and dysuria.  My current regime is to take bladder spasm pill the night before the treatment begins.  Drink none or a little amount of liquid in the morning followed by another bladder spasm pill.  After I do my urine test to clear for chemo I take an over the counter medicine called AZT.  My PA prescribed valium which I take 45 minutes before treatment begins.  

    Since I started monthly I have a burning sensation when the Gemcitbine is administered throughout the pelivc area.  I only have to keep the Gemiciatine in for 1 hour, then it is followed up with Docetaxel for 90 minutes.  Before this regiment I was having intense spasms and had to stop at least one monthly maintenance treatment.   While still very unpleasant I have not had to quit any treatments with this regime.  The post treatment Dysuria is very painful and lasts at least 48-72 hours.  I have also noticed sort of a brain fog for a day or two after.  

    Also very important to not schedule a scope for at least 4-6 weeks after your last Gemcitabine treatment as the inflamation from the treatments can lead to an unncessary TURBT.  I did a scope a couple days after a treatment and the Urologist had me do a TURBT.  Did biopsy on 5 spots all of which was inflammation, likely from the Gemcitabine treatments.  

    The more you know. 

  • swarmy2007

    Member
    March 19, 2021 at 2:18 am

    Thanks for tips & links folks. Sounds optimistic. My Uro when ask what plan or how many years told me 3 x months scopes forever followed by Gemzar 3x week. Said mine of such high grade every time they tried slack off it returns. Doesn’t give me much to look forward to except the alternative is worse. That’s been the most confusing part for me on this journey…. how to judge/grade my particular circumstances. Perspective I keep grasping is 4 years now and still here so hang in there. Do know the Gemzar is wearing me out though. Ummm wonder what they will use next? 

  • Alan

    Member
    March 18, 2021 at 1:19 pm

    Adding to what Joe wrote. Nothing says you have to complete the maintenance protocols of any agent plus there are many approaches on what is “right” or “works”. Very few complete the BCG treatment and most are doing fine afterward. I do agree that maybe a reduced dosage would be a try. If that doesn’t work then continue your scheduled scopes and simply watch and observe.


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
  • joea73

    Member
    March 18, 2021 at 4:43 am

    You do not have to keep Gemcitabinefor two hours in the bladder.

    Below is the link to the British Columbia Cancer Center description of Gemcitabine.
    Page 5 describes the treatment of Intravesical Gemcitabine.

    Gemcitabine may be used undiluted (~50 mL) or diluted with NS up to 100 mL; solutions are retained for 1-2 h
    after installation.

    http://www.bccancer.bc.ca/drug-database-site/Drug%20Index/Gemcitabine_monograph.pdf

    best

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