Stage 1 Bladder Cancer/Gemcitabine

Posted by sue225 @sue225, Jan 22, 2020

My 78 year old husband has been living with non-invasive bladder cancer for about 14 years. He had a recurrence in December, (had TURB surgery)and is now going to be treated with a new drug called "Gemcitabine" (by infusion via urethra). In the past he has been treated with BCG following TURB procedure, but had a bad reaction to the BCG five years ago. On one other occasion, mitomycin was given. Wanting to hear from others who have been treated with gemcitabine and if the treatment worked . The urologists in Canada have just started using this drug for Stage 1 bladder cancer. Thanks.

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@texascitylady

Hi Sue. My husband went in for his 3 month checkup after having gone through 6 weeks of BCG treatments (which he very well tolerated) & the doctor could find no signs of cancer, so he said he did not need to do a biopsy. I hope your husband has great tolerance this time around & we will keep him in our prayers.

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Thankyou so much @texascitylady. My husband appreciates your kind words and prayers💕

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@sue225

@plugger how are you doing? Thinking about you as my husband was unable to tolerate gemcitabine. Here we are a year later, two TURBS in 2020, (also carcinoma in situ, high grade). Giving BCG another try. Two treatments over. Hope the side effects stay minimal. (Bladder removal maybe if all else fails).
I hope 2021 is being kind to you.
Australia is doing a better job with this pandemic than we are here in Canada.

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We have very fond memories of our time spent in Canada about 10 yrs ago. I agree that here in OZ we have been extremely fortunate with our response to COVID. We have had very little person to person transmission and when it did happen the tracking system managed to identify all the potential exposures. Our biggest problem came from either people from OZ returning home or international visitors who were undetected when they entered the country.
I didn't get the results I was after at the end of Jan. The carcinoma in-situ has turned up in a different part of the bladder. and the urologist still wants to remove the bladder but I am off to see my oncologist with another round of Gemcitabine at the end of this month and will talk to him about what he would recommend. The prostate has now turned up in my bones and they have started me on hormonal treatment to stop it advancing any further. I will find out about progress with the leukaemia in a couple of weeks.
All this is just part of my life now. We live in a retirement village and there is always something on to keep us occupied.

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Yes, regarding Covid-19 containment, our government has been reactive not proactive. Although it is easier to control when your country is an island. Nevertheless, there have been issues here and the vaccine rollout gets a bit of a failing grade so far. Maybe it will turn around.
My husband has had carcinoma in situ reoccur a number of times over these fourteen years and yes early on one oncologist recommended removing the bladder and the prostate. My husband went for a second opinion and for the prostate went the radiation route and that worked out very well. And he chose to keep dealing with the bladder with surgeries (TURB) and trying BCG, mitomycin, gemcitabine. Things may get a little complicated now. We'll have to see how bcg goes.
I mention this because maybe like my husband, it may not be time to give up the bladder. Maybe the oncologist will have a different solution.
Life is bittersweet. I am not a religious person, but will hold you in my thoughts and wish the best for you.

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I'm 85 and I'm scheduled for gemcitabine treatments a month post TURB on 2/10/22. The chemo administered in the hospital following my initial surgery in 12/2019 was pretty painful. My doctor says Gemcitabine treatments, six in six weeks, are "....usually well tolerated." However, some comments above allude to incomplete courses of therapy. Why? Any side effects? Allergic reactions? Problems with intercourse after 6 weeks of urethral "invasions"?

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@blades

I'm 85 and I'm scheduled for gemcitabine treatments a month post TURB on 2/10/22. The chemo administered in the hospital following my initial surgery in 12/2019 was pretty painful. My doctor says Gemcitabine treatments, six in six weeks, are "....usually well tolerated." However, some comments above allude to incomplete courses of therapy. Why? Any side effects? Allergic reactions? Problems with intercourse after 6 weeks of urethral "invasions"?

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Welcome @blades. I can imagine that you are a little apprehensive about starting treatment with gemcitabine after your earlier experience with chemotherapy. I'm tagging @sue225 @plugger @texascitylady to bring them into the discussion to share their experiences.

Gemcitabine can have side effects that can cause a pause in treatment or incomplete courses. That is usually due to low white blood cell counts (neutropenia) which can increase your susceptibility for infection. Thus sometimes a course of treatment is postponed to wait until the blood cells recover.

When will you be starting treatment?

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@blades

I'm 85 and I'm scheduled for gemcitabine treatments a month post TURB on 2/10/22. The chemo administered in the hospital following my initial surgery in 12/2019 was pretty painful. My doctor says Gemcitabine treatments, six in six weeks, are "....usually well tolerated." However, some comments above allude to incomplete courses of therapy. Why? Any side effects? Allergic reactions? Problems with intercourse after 6 weeks of urethral "invasions"?

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My husband was unable to tolerate gemcitabine. But he had had so many TURB surgeries that his bladder lining was thin and it was painful for him. The urologist had had many positive experiences with his other patients. gemcitabine was tried because my husband was also no longer able to tolerate bcg which worked well for the first 10 to 12 years. So in Nov. 2021, he had a total radical cystectomy and he has made a total and full recovery and is in great shape rebuilding parts of our deck! He is 80. He feels great now.

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@colleenyoung

Welcome @blades. I can imagine that you are a little apprehensive about starting treatment with gemcitabine after your earlier experience with chemotherapy. I'm tagging @sue225 @plugger @texascitylady to bring them into the discussion to share their experiences.

Gemcitabine can have side effects that can cause a pause in treatment or incomplete courses. That is usually due to low white blood cell counts (neutropenia) which can increase your susceptibility for infection. Thus sometimes a course of treatment is postponed to wait until the blood cells recover.

When will you be starting treatment?

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Hi everyone, I will just lead you through my treatment journey first. I am now 80 and I was diagnosed with bladder cancer in 2016 when my Urologist was taking biopsy of my prostate, he went into the bladder to check things out as I had no symptoms of either bladder cancer or the prostate cancer except in the case of the latter it had increased from 2.8 to 5.4 which was still within the boundaries of normal.
I am fortunate as the initial cancer was non-muscle-invasive cancer. The first step was to clear the bladder and then operate on the prostate. I was treated was with intravesical BCG (24 treatments) then intravesical Mitomycin (12 treatments) all of which was unsuccessful. During all this time I was diagnosed with the most aggressive form of Leukaemia (TP53 mutated, deletion 17p). The prostate was also removed.
My Urologist strongly recommended removal of the bladder as the cancer had changed to Carcinoma in-situ which he advised is very difficult to stop if it escapes the bladder but after discussions with my Haematologist/Onclogist I started a treatment of intravesical Gemcitabine. At last success. I had the initial 6 rounds which had knocked the cancer around but not completely so another 6 rounds with improved success but it was extremely stubborn and difficult to remove, I moved onto a Gemcitabine maintenance protocol with 3 monthly cystoscopy, and if required, TURBT, I had to stop the Gemcitabine after around 4-6 months. Over the next 18 months the treatment started to have an impact with no evidence of cancer since early 2021.
I found that initially I was able to cope with the intravesical Gemcitabine not because of my white blood cell count which reached a peak of 180,000 but my body kept rejecting the Gemcitabine, it was only on a couple of occasions that I was able to hold the drug in the bladder for the required 2 hours, I believe that if this problem didn't occur then I would have enjoyed success much earlier. The problem was created by a combination of an inflamed and irritated bladder caused by the biopsy and the actions of Gemcitabine. The Urologist advised that the surface of the bladder is now smooth and clean so in the event I am forced to undertake more Gemcitabine I believe I will have a better outcome. I am now on 6 monthly cystoscopy and can't wait until this is moved out to 12 months. The other two diseases are responding to treatment, the prostate cancer had unfortunately metastasized into the bones but the treatment is holding it nicely at bay, the leukaemia is also being well managed by the new bunch of drugs that specifically target my leukaemia sub-set.
This has been a bit long winded but I appreciate the difficulty you face in making a decision about Gemcitabine as we are both in the same age bracket and things aren't quite as easy when the clock has ticked over this far. One of the problems we face is the limitation in the choices of treatment of drugs for bladder cancer which haven't advanced like they have for leukaemia and breast cancer but this is something we have to live with. Undergoing treatment is all about providing us with the opportunity to extend our life so if you try the Gemcitabine and it proves to be too difficult for you then you just stop, you will have lost nothing. Best wishes in your decision making and I hope things turn out right for you.

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@sue225

Yes, regarding Covid-19 containment, our government has been reactive not proactive. Although it is easier to control when your country is an island. Nevertheless, there have been issues here and the vaccine rollout gets a bit of a failing grade so far. Maybe it will turn around.
My husband has had carcinoma in situ reoccur a number of times over these fourteen years and yes early on one oncologist recommended removing the bladder and the prostate. My husband went for a second opinion and for the prostate went the radiation route and that worked out very well. And he chose to keep dealing with the bladder with surgeries (TURB) and trying BCG, mitomycin, gemcitabine. Things may get a little complicated now. We'll have to see how bcg goes.
I mention this because maybe like my husband, it may not be time to give up the bladder. Maybe the oncologist will have a different solution.
Life is bittersweet. I am not a religious person, but will hold you in my thoughts and wish the best for you.

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Sounds like a similar medical history. My husband also had prostate cancer which he successfully treated with radiation. He also had carcinoma in situ but it never went outside the bladder wall. When he had the radical cystectomy (and removed prostate at same time) they did find a tiny bit of cancer in the right ureter which was removed. Recent ct scan gave him the all clear. My personal opinion is, he should have had a cystectomy a year + earlier.

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@sue225

Yes, regarding Covid-19 containment, our government has been reactive not proactive. Although it is easier to control when your country is an island. Nevertheless, there have been issues here and the vaccine rollout gets a bit of a failing grade so far. Maybe it will turn around.
My husband has had carcinoma in situ reoccur a number of times over these fourteen years and yes early on one oncologist recommended removing the bladder and the prostate. My husband went for a second opinion and for the prostate went the radiation route and that worked out very well. And he chose to keep dealing with the bladder with surgeries (TURB) and trying BCG, mitomycin, gemcitabine. Things may get a little complicated now. We'll have to see how bcg goes.
I mention this because maybe like my husband, it may not be time to give up the bladder. Maybe the oncologist will have a different solution.
Life is bittersweet. I am not a religious person, but will hold you in my thoughts and wish the best for you.

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& thankyou for your kind words. Wish you and your husband well.

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@sue225

My husband was unable to tolerate gemcitabine. But he had had so many TURB surgeries that his bladder lining was thin and it was painful for him. The urologist had had many positive experiences with his other patients. gemcitabine was tried because my husband was also no longer able to tolerate bcg which worked well for the first 10 to 12 years. So in Nov. 2021, he had a total radical cystectomy and he has made a total and full recovery and is in great shape rebuilding parts of our deck! He is 80. He feels great now.

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Thanks so much Sue for sharing your experience. I'm happy for you and your husband, and admiring of his -- and your -- perseverance through what clearly were difficult times. I have had 5 gemcitabine infusions, with one more to go. None of them were painful. My bladder did not have to go through the trials your husband's did. Following nos. 4 and 5, I had sudden tiredness and pressure/brain fog/wooziness especially after no. 5. That was of some concern to me. My 6th is scheduled for 4/18. My worry was about the possibility of symptoms similar to what I'd had, but permanent. My hunch is that's unlikely. Continued good luck to you and your resilient spouse.

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