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Homepage – Forum Forums Muscle Invasive Bladder Cancer Radiation with Chemotherapy – a bladder preservation strategy

Viewing 15 posts - 1 through 15 (of 31 total)
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  • #8747
    DerekA
    Participant

    Radiation with Chemotherapy, followed by another course of Chemotherapy:

    PLEASE ALSO SEE MY POST OF JUNE 17, 2017 BELOW

    My previous posts on Aug 29 and Sept 30 described my bladder cancer journey to the stage of when I was informed that I had recurrent tumours, and that one was muscle invasive.

    At the Montreal BCC forum in September, my wife, son, and I heard 4 doctors speak about the various options available to treat MIBC and their advice to seek second opinions. As my urologist did not perform radical cystectomies, he referred me to a urologic surgeon who by coincidence had spoken at the BCC forum. My wife and I went to see him, fully expecting to discuss when I could have surgery (RC), and what type of diversionary tract would be best suited. To our complete surprise, he suggested that I might be a good candidate for the bladder preservation procedure of “radiation with chemotherapy”. A few days later we met with the BCC Forum radiation oncologist who also said that I should consider this option. Two opinions: both same suggestions. So this is the course that we decided to follow.

    A PET scan showed 1 lesion in the bladder and 2 lesions in the prostate, but no evidence of metastasis. A cystoscopy showed no new tumours and the biopsy of the prostate lesions was benign. So my BC is T2HG. My medical oncologist in consultation with the radiation oncologist, have scheduled me for 4 weeks of radiation, with chemotherapy week 1 and 4, starting Dec 19. If I response positively, sometime around the beginning of February, 8 sessions of chemotherapy over a 12 week period. There are more medical details/procedures/tests etc., however I want to keep this post somewhat brief. But I will respond to any questions with more info.

    I am writing this post and will continue with follow-ups as there seems to be very little on the “Discussion Forums” regarding personal experiences with “radiation and chemotherapy” as a bladder conservation strategy. Of course everyone’s situation is unique, their choices, risk tolerance, medical situation etc., are personal. For me, I am very healthy, no other medical complications, and accept the possible reward of keeping my bladder versus the risk of having to do a radical cystectomy later on if this strategy fails. We felt confident with the doctors that we met and who are now treating me. The hospital has an excellent reputation as a cancer treatment center. And when one of the doctors said to us “your problem is now my problem”, my wife and I entered into a pretty good space.

    ….to be continued.

    #21277
    StephenW
    Participant

    Hi Derek,

    Glad to hear that your bladder may be preserved! More urologists are using this strategy successfully with select patients. I don’t know if you’ve read our latest Patient Guidebook, but it deals with the bladder preservation strategy. If you haven’t downloaded it yet, here’s the link: http://forum.bladdercancercanada.org/en/facing-bladder-cancer/guidebook

    Wishing you the very best!

    Stephen

    #21281
    Rick B
    Participant

    That is great news Derek. Wishing you the very best and success in preserving your bladder.

    We are very fortunate that you are sharing your experience and look forward to your updates as the treatments progress.

    Thank you again…God Bless!

    Rick

    #21421
    DerekA
    Participant

    Radiation with Chemotherapy, followed by another course of Chemotherapy:

    Continued from previous post Dec 17, 2016….

    PLEASE ALSO SEE MY POST OF JUNE 17 2017 BELOW

    (and my previous posts on Aug 29 and Sept 30 described my bladder cancer journey to the stage of when I was informed that I had recurrent tumours, and that one was muscle invasive.)

    Short summary:

    Dec 19th started week 1 of radiation with chemotherapy by infusion pump. Dec 22 started having “plumbing” problems, not incontinent, but urgent frequency every hour or so. Also, got a little tired from interrupted sleep and maybe the treatments. Weeks 2 and 3, shortened by holiday, 4 days/week of radiation only. Dec 25, mouth sores very painful by Dec 28. Doctor prescribed “magic mouth wash”, Dec 30, cured. Week 4, Jan 9, another week radiation with chemotherapy by infusion pump. Jan 16/17 holiday makeup days, radiation only. I did get somewhat tired from about a month of interrupted sleep, up early to get to the hospital, and constant quite uncomfortable bathroom trips. But no other symptoms, felt fine most of the time, no nausea, no temperatures, no loss of appetite, gained about 5 pounds from lack of exercise and my wife’s good cooking. Everything back to normal by Feb15. I feel totally healthy, everyone says I look fine, and have been skiing regularly.

    On Feb. 27, I start 8 sessions over a 12-week period of chemotherapy treatments that would target any free-floating cancer cells outside the bladder. i.e. week 1&2 chemo sessions, week 3, off; repeat 4 times; finish May 5.

    The success or failure of my treatments will only be known when I have a cystoscopy. And that may only be at the end of these additional chemo cycles, so maybe sometime in May.

    More details:

    Week 1&4: The Chemo infusion pump attaching to a PICC line is awkward/uncomfortable especially when sleeping. I finally figured out that attaching the pump to my arm with Velcro straps was a much more comfortable arrangement. For showers, I wrapped clear wrap over the PICC line, followed by several layers of cling wrap, over the bandages. When wearing the chemo pump, the line was long enough to keep the bottle outside the shower.

    The PICC line has to be flushed every 2 or 3 days. CLSC (Quebec visiting nurses) did this for me.

    Radiation treatments were very quick and painless. From check-in to leaving, the majority of times were about 30 minutes, including treatment time of about 15 minutes. All treatments (except twice when the chemo pumps were attached) were at 8AM. Less chance of patient back-ups, but after interrupted sleeps, getting up early added to my tiredness.

    Magic mouth wash: Really works, and I should have had a prescription to start as soon as sores began.

    Throughout the whole process, we went out to lunch/dinner several times, many short walks of an hour or less, saw friends/family, and generally I felt fine.

    …..to be continued

    #21423
    rock2013
    Participant

    Derek, bladder preservation is certainly worthwhile. It is recommended by oncologists/Uro surgeons. of course, the stage and the grade are factors. In my case it was impossible the bladder cancer was advanced and attacking the lymph nodes and the prostate. There was no other choice but to remove bladder lymph nodes and the prostate. Stage 3 high grade, very aggressive. Best of luck.

    #21424
    DDep
    Participant

    DerekA

    I am pleased to hear that your medical team and you are going through bladder preservation therapy.
    Prayers that all goes well.
    Please keep the posts coming !!

    God Bless

    DDep

    #21428
    marysue
    Participant

    Hi Derek:

    What an adventure! Your information is so valuable. Please keep posting as you go forward and YES!!! Best wishes for success and I hope and pray that side effects are minimal at best. ((((((((BIGHUGS)))))))))

    #21736
    DerekA
    Participant

    Radiation with Chemotherapy, followed by another course of Chemotherapy:
    Continued from previous post Feb 23, 2017 that dealt with my chemo/radiation treatment….

    And my previous posts on Aug 29, Sept 30, and Dec 17, 2016, where I describe my bladder cancer journey from the stage of when I was informed that I had recurrent tumours, and that one was muscle invasive to the start of chemo/radiation treatments.

    On Feb 27, 2017, I started chemotherapy that would target any free-floating cancer cells outside of my bladder. The regime would be 4 cycles consisting of week 1 – a long session of chemo (2 ½ hours); week 2 – a short session of chemo (1 hour), week 3 – off.

    Cycle 1 started off with no problems, however on March 8th, my left arm became inflamed, red, and a vein was very hard. An ultrasound revealed a superficial clot a few inches below my shoulder. I was very tired, and my white blood count and platelets had dropped significantly. The next cycle of chemo was postponed for a few weeks, I was given an injection to boost my WBC and a transfusion of platelets. The clot would simply be monitored.

    Cycle 2 started on March 31st, but this time, I became very tired, back pains, metallic mouth taste, depressed, could barely drag myself across the street, and I gained about 12 pounds (fluid retention) in 10 days. On April 18th I developed another clot, this time on my right arm. Again, an ultrasound revealed a superficial clot a few inches below the shoulder. In discussion with my oncologist, I said that I wanted to think about stopping my chemo sessions.

    The next few days, I read extensively, consulted with others, and finally decided to stop further chemo treatment. The feeling was that the very real downside risks from further clotting was not worth the possible upside protection that chemo might provide. On April 25th, I met with my oncologist and we agreed to stop further chemo treatment.

    I rapidly recovered my strength, and both clots were slowly being reabsorbed. On May 23rd, I resumed playing tennis. I felt great.

    May 16, a CT scan saw no signs of any bladder tumors. June 6th, I underwent a cystoscopy with resection. And on June 16th, my oncologist gave us the wonderful news that the pathology showed no cancer! We were greatly relieved!

    Starting from the muscle invasive pathology report in Sept 2016 until a cancer free pathology in June 2017 has certainly been a long journey. It hasn’t always been easy, the chemo was very rough, radiation was tiring, but most of the time I felt and looked just fine. And I still have a very functioning bladder!

    I will now be on a monitoring schedule every 3 months for the next few years. While I know that bladder tumors often reoccur, my focus is on the present and I will try not to worry too much about the future.

    I have written these posts because chemo/radiation as an alternative treatment for muscle invasive bladder cancer seems to be the lesser of choices compared to cystectomy, and mostly recommended for those who would/could not tolerate a major operation. As I wrote in my first post…

    “everyone’s situation is unique, their choices, risk tolerance, medical situation etc., are personal. For me, I am very healthy, no other medical complications, and accept the possible reward of keeping my bladder versus the risk of having to do a radical cystectomy later on if this strategy fails. We felt confident with the doctors that we met and who are now treating me. The hospital has an excellent reputation as a cancer treatment center. And when one of the doctors said to us “your problem is now my problem”, my wife and I entered into a pretty good space.”

    I hope that my posts are helpful for some readers to have meaningful discussions with their doctors.

    Good Luck…..Derek

    #22020
    DerekA
    Participant

    Radiation with Chemotherapy, followed by another course of Chemotherapy:
    A bladder preservation strategy.

    Please see my previous posts on Aug 29, Sept 30, and Dec 17, 2016, where I describe my bladder cancer journey from the stage of when I was informed that I had recurrent tumours, and that one was muscle invasive, to the start of chemo/radiation treatments. And my posts of Feb 23, and June 19, 2017, that dealt with my chemotherapy treatments, CT scan and TURBT. ( please search “NEW TO BCC, FIRST POST” and “Radiation with Chemotherapy” or “DerekA”).

    GOOD NEWS!

    Sept 14, 2017, I had a PET scan to check if cancer might have spread to other parts of my body from the bladder. Good news a week later when my oncologist told us that all was clear.

    Dec 5, 2017, a cystoscopy, and the urologist said no signs of a recurring tumor.

    I certainly realize that the monitoring and possibility of recurrent bladder cancer is something that I will have to live with for the rest of my life. However when I think of the despair my wife, family and I went through when first informed that I had cancer, and later when a muscle invasive tumour was discovered, my current situation is remarkable. I still have my bladder, my “plumbing” is completely normal, and I feel great. Last summer, I played tennis, and now in winter, I am back to skiing. And we have travelled in the fall and are planning more trips this winter.

    I have written this post with two objectives in mind:

    First, I know the worry/black cloud/despair that many have posted when diagnosed with bladder or other types of cancer. Perhaps my “good outcome” post will give some measure of hope/optimism/courage to others.

    Second, very few BCC posts deal with bladder preservation (trimodal) strategies. I am not a doctor, I do not know why the doctors suggested that I try chemo/radiation, nor do I know the selection criteria. But I do know that at least so far, this has worked for me. So hopefully my story will lead others to at least ask their doctors about this option.

    #22021
    Jack Moon
    Keymaster

    Congrats DerekA, on the all clears. Their a very few posts on the forum regarding bladder preservation, but we are starting to receive more telephone calls from patients that are looking for support. If you are willing to share your experiences with patients seeking support please private message me.
    Again congrats,
    Jack

    #22025
    marysue
    Participant

    Hi Derek:

    Thank you for keeping us up to date on your progress and congrats on the continued all clear. You seem to have found the right path for you.

    I think that you need to be commended for your courage in taking this route. I know that it hasn’t been easy, especially doing all that drug treatment. I’m sure that this Christmas will be very special. (((((HUGS)))))

    #31515
    DerekA
    Participant

    Radiation with Chemotherapy, followed by another course of Chemotherapy:
    A bladder preservation strategy:

    ((My previous posts (see above) describe my bladder cancer journey from the stage of when I was informed that I had recurrent tumours, and that one was muscle invasive.))

    Again, good news. A recent cystoscopy and PET scan were both all clear. Although I try not to worry before these procedures, it is a huge relief when the doctors say everything is OK. I am now almost 1 ½ years since my chemo/radiation treatment. My health is excellent and all “plumbing” systems function naturally.

    As I have written previously, very few BCC posts deal with bladder preservation (trimodal) strategies. I am not a doctor, I do not know why the doctors suggested that I try chemo/radiation, nor do I know the selection criteria. But I do know that at least so far, this has worked for me. So hopefully my story will lead others to at least ask their doctors about this option.

    #33536
    DerekA
    Participant

    Jan 2019

    Radiation with Chemotherapy, followed by another course of Chemotherapy:
    A bladder preservation strategy:

    (My previous posts (see above) describe my bladder cancer journey from the stage of when I was informed that I had recurrent tumours, and that one was muscle invasive.)

    Good news! PETS scans in Sept 2018, and again on Jan 10, 2019 were both clear. I now move to a 6-month follow-up schedule. My cystoscopy also in Sept 2018 was also all clear. This too is now on a 6-month follow-up schedule.

    I did have some serious bleeding last fall. This experience was rather shocking and worrying that something was seriously wrong. However, it was diagnosed as radiation-cystitis, which in most cases is not particularly much of a problem.  It went away after about 3 weeks and has not reappeared now for 3 months.

    I am now 3 years since first being diagnosed with a bladder tumour (non-invasive) and 2 years since finishing the chemo/radiation treatment for a muscle invasive tumor. My bladder is still intact, and the “plumbing” functions are normal. I am most grateful!!

    #33537
    Jack Moon
    Keymaster

    Hi Derek

    Thanks for sharing your great news. There are more and more patients looking at this type of treatment in lieu of having bladder removed.
    All the best,
    Jack

    #33556
    Nightingale
    Keymaster

    Hi Derek,

    Thanks for sharing this wonderful news.  I’ll be sharing this with my in-person Support Group Patients in Hamilton.

    My best,

    Alex

    Forum Moderator

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