Any women out there that can provide Advice when having Chemotherapy / Chemoradation/Radiototherapy. for Invasive Bladder Cancer

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I have been told that there may be the opportunity to have my bladder preserved by having preventive chemo combination of Gemcitabin and Cisplatin.  

Followed by Chemoradation/Radiototherapy.

1. Just wondered if anyone else has gone through that? 

2. If so, what were your cycles ie how many months of treatment overall? I am afraid although I tried to take notes am a little confused re days on and off.

3. Did you suffer any side effects. Know there is a list but just wondered the most common ones. 

4. Also did you cut your hair for the hair loss part or just wait for it to fall out. I googled and read with Cisplatin this a common side effect. 

Any other advice most welcome.

Thank you

  • Hi  . Not a lady answering sorry, but I could give you a general overview of the schedule of this treatment if that is any help. Best wishes.

    Best wishes to All,   rily.

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  • That would be helpful thank you.

  • Good Morning  . The Gem/Cis regimen is usually two or three cycles. A cycle is a long day the first week with Gemcitabine and Cisplatin. The following week a half day with just Cisplatin. I had 3 cycles over 6 weeks and tolerated it well with no real nasty effects. As well as working on the bladder, the chemo is designed to mop up any potential rogue cells elsewhere in the system. Several weeks break to allow the chemo to do its job. Some scans to see how effective it has been. Then daily radiotherapy for up to six weeks. The sessions only take about 15 minutes and it is painless. The chemo alongside the radio is administered via a PICC line and chemo pump on weeks 1 and 4. (MMC/5FU). The chemo bottle is worn for a week and the drug is administered very slowly. This helps the radio to be more effective. It can become very tiring towards the end. Fatigue and loose bowels can set in for several weeks after treatment finishes. After a few weeks a, cystoscopy under GA to see how things have worked. I hope all goes well whichever route you choose. Best wishes.

    Best wishes to All,   rily.

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  • Hi Das, 

    I just wanted to share my experience of gem/cis chemo, my cancer was in the upper urotract so I lost my left kidney and ureter, this is classed as bladder cancer still. I had three cycles of chemo over nine weeks, I was told I would lose my hair and thought about cutting my hair short before it started, but although I did lose a fair bit it just thinned a lot, so I am glad I didn’t have it cut short. This continued for a few weeks after chemo finished, but one year on it is back to full thickness again. I did suffer with nausea and a metallic taste and was advised to keep frozen pineapple in the freezer as it was one thing that still tasted as it should. I found ensure drinks were the best for me to replenish some nutrients as I didn’t like fortisip, but everyone is different.

    I wish you well with your treatment and hope this gives you some comfort and puts your mind at rest.

    take care 

    Annie x

  • Thanks Annie for the info very much appreciated.

  • Rily apologies for not replying earlier. I read the info but it has been so hard to focus. It is all so overwhelming. Thank you for the detail very much appreciated. May I check from an earlier post your Tumour/cancer was it classified as aggressive and Invasive? Also am I right that you had a second TURBT?  Mine is T2 Tumour G3 so they are reviewing about the bladder preservation piece and nothing has been mentioned for a 2nd TURBT at this stage.

  • Hi  . Yes, mine was muscle invasive and aggressive T3/G3. A follow up TURBT is common in most cases, just to mop up and give them a more accurate diagnosis. Best wishes.

    Best wishes to All,   rily.

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  • Ok many thanks

  • Hi Das, I do not have any experience yet as I have just been diagnosed muscle invasive G3PT3 with 3 types of cancer. Only known just over a week and still waiting to hear if it has spread. Pretty gutted as a big shock and I am only 56.

    Wishing you the best of luck on your journey x

  • Hi Sharon - am so sorry to hear of your diagnosis. It can be overwhelming so do reach out with any specific questions to the online community here as it helped me immensely just to understand others experiences etc.

    Given the "waiting" for results can be overwhelming I would recommend if you have not done so already to call the Macmillan Helpline support line 0808 808 0000. They provide people you can talk to about what you are going through as well as (if you wish/need) to speak to Medical Nurses for any medical questions you may have.

    Best wishes