Homepage – Forum › Forums › Non-Muscle Invasive Bladder Cancer › NMIBC — Intravescular Gemcitabane with Small Fluid Retention/OAB
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Jack Moon.
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April 23, 2020 at 3:07 pm #38365
alexg
ParticipantSubject: CIS High Grade Tis non-invasive Bladder Cancer and, after TURBT / Six-week regimen of intravescular Gemcitabine administration.
I have OAB with small fluid retention capabilities and a personal story for similar folks undergoing intravescular Gemcitabine (or other intravescular) treatment for Bladder carcinoma in situ. Gemcitabine is being used because of the shortage of BCG. I understand that each person’s case is different — which is why I mention this alternative might encourage a discussion between patient and doctor. I don’t pretend to say that what worked for me will work for everyone undergoing the same treatment.
After discussions with my doctor, we decided to try the “split” approach for the second treatment (and third — which was yesterday), since I was unable to hold the full dosage for more than 25 minutes (1-hour or more is the recommended “hold’ time for the chemotherapy drug). After catheter insertion, 1/2 of the dosage was delivered to my bladder, and the assistant checked on me every 15 minutes. I was able to successfully hold the initial 1/2 dose for about 45 minutes. The bladder was then emptied (via the catheter) and the second 1/2 of the full dose was then administered. I have been able to successfully hold the second 1/2 dose for about 20-25 minutes (the bladder started to feel like it was “burning” after about 15 minutes during this second 1/2 dose administration.
Only time will tell how successful this approach has been. I have three more Gemcitabine administrations to go through. Then we wait ~6-8 weeks and I return to the operating room for a full cystoscopy exam (with biopsy).
I will let you know of my progress, so the results can be passed along to others. To reiterate, I am not a doctor, and can’t possible know if this approach will work with everyone or every case of Bladder carcinoma in situ — some may depend on the physical location of the lesion(s). But I do know that I was unable to hold a full dose for more than 25 minutes (the standard time is supposed to be 1 hour or more. With this approach, I was able to have the chemotherapy in my bladder for over an hour — although it was done in two 1/2 doses
April 25, 2020 at 1:43 pm #38380Joe
ParticipantHi Alex,
Thanks for posing your unique way to deal with Intravesical Chemotherapy treatment for over active bladder patients. It will be very useful for someone in similar situation. It sounds like a tough combination. When I was diagnosed with non muscle invasive bladder cancer (NMIBC) I was peeing often due to enlarged prostate. After TURBT procedure for awhile, it got worse. When I had to go out, I had to pee at many public places, hiding behind a building, trees and bushes. I wet my pants a few times when I was waiting for a traffic light to turn green at a intersection. Luckily, it got better after a couple of months. But I clearly remember not only physical side but emotionally. So, I think I understand what you are going through and admire that you are taking it with a stride.
I have been following how BCG shortage is affecting bladder cancer patients in Canada and in US. In US, I know some patients were treated with intervesical chemotherapy instead of BCG because of the BCG shortage, but you are the first person I know in Canada. The only person case I have known in 2 years is that a patient with intermediate risk non muscle invasive cancer (NMIBC) was told the patient’s BCG treatment would be delayed by a month. I live in BC. So, I was surprised to know your case.
Do you mind to share in which province and in what type (a large university hospital or local regional hospital) of hospital you are being treated ? The reason I ask the question is because other hospital have BCG in their stock. I know you have already started with Intravesical chemotherapy but you may want to get a second opinion from a major hospital which is classified as a center of excellence for bladder cancer. BCG is known to work better especially for CIS than intravesical chemotherapy. Of course we do not know if BCG reacts more to OAB than chemo. But it is nice to know also which hospital has BCG. Incidentally, I know a few patients who did not respond well to BCG but intravesical chemotherapy worked.
Anyway please keep us posted with your progress and best wishes for a good result from your treatment.
Joe
April 25, 2020 at 5:42 pm #38383alexg
ParticipantHi Joe:
Thanks for responding. I actually am in the US — in the Washington, DC area. The doctor told me that BCG is the “gold standard” of treatment but that there has been a shortage her in the US for awhile, with no known date as to when it might become available again (seems to be confirmed with my research/searches. It is possible that there might be some available with clinical trials that are already underway, but there are non that I could find in the DC area. And, with the current COVID-19 situation, some clinical trials and treatments in general are being postponed, so I decided to proceed along this path.
Fortunately, my OAB has not gotten worse following TURBT or with treatment — in fact it seems it may have improved a bit. We’re going to continue the “two-step infusion” approach for the remaining three treatments, and then wait until late-June/early-July for the cystoscopy follow-up. Fingers crossed, but I’m well aware that “it ain’t over till it’s over” — and even then it may not ever be over.
Will keep the site updated on progress. I do help this might be of some help or at least open a dialogue for other OAB’ers who just can’t hold treatment for the full duration. It may not be suitable for everyone, but at least I’m glad I raised the question about the approach with my doctor and we are giving it a try.
Another hint to alleviate the boredom of lying on your back on an exam table and staring at the ceiling doing nothing during treatment — bring along your earphones and listen to music or an audiobook. The time doesn’t pass any quicker — but at least it seems like it is. 🙂
alex
April 26, 2020 at 1:14 pm #38385Joe
ParticipantHi Alex, thanks for clarification.
I know someone in Arizona who had to go on intravesical chemotherapy due to the BCG shortage. This patient has been treated with Mitomycin rather than Gemistabine. Do you know your doctor chose Gemistabine instead of Mitomycin? I have heard Gemistabine is more tolerable than Mitomycin.
Interesting but glad that chemo improved your OAB.
After everything done, perhaps you and your doctor co-author a report with the title like “Administration of Intravesical Chemotherapy for over reactive bladder”. 🙂
Anyway, keep 2 meter, sorry in US 6 ft distance and best luck for the remaining treatment.
Joe
August 8, 2020 at 2:56 pm #39028alexg
ParticipantI’m back: Completed the six-week Gemcitabine protocol in May and had the follow-up Cystoscopy at the end of June. The biopsies still had CIS in one of four areas tested (same area as original). Was referred to a urologic oncologist who had access to BCG, and just started my six-week protocols this week. With nothing to drink after 10PM the night before, and after a Levsin-SL pill under the tongue just prior to BCG instillation (using a small catheter and — I think — a smaller volume of liquid), and I was able to retain the “Witches Brew” for the full two hours. Minor initial side effects. Will see what subsequent treatments bring and if the BCG works. Fingers Crossed
August 9, 2020 at 6:56 am #39031Jack Moon
KeymasterHi Alexg
Good luck with the BCG treatments, hopefully they stop the CIS from recurring.
Keep us posted on how you are progressing.
All the best,
Jack
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