Hi, my Mum (75 yrs) has been diagnosed with muscle invasive T2 G3 bladder cancer. She had a TURBT in January and the bulk of the solitary tumour has been removed but there are cells left in her muscle which need eradicating. She’s pretty much discounted surgery and is erring towards radiotherapy but after meeting the oncologist yesterday has another choice of concurrent chemo. They said chemo makes the radio more effective and can increase the risk of it not returning by an extra 20%.
Has anybody experience of combine radio & chemo? Chemo being administered during wk1 & wk4. Mytomycin & 5FU are the chemo drugs.
Mum is otherwise fit and very active. Hardly had to take a paracetamol in her life so it’s hit her hard.
Any feedback would be great. x
Hi and welcome to the group where I am sure you will get a lot of support while looking after your Mum. Obviously an anxious time for your family, but we all understand what you are experiencing at the moment. This sounds like the same treatment I had over 6 years ago and has so far been good for me. I had chemo before starting radiotherapy for 6 weeks which halted any advance of my tumour. I then went on to 6 weeks of daily radiotherapy. During radiotherapy I had a chemo pump for 2 of the weeks with a cocktail of 5FU and MMC (Mitomycin). This is administered via a chemo pump and PICC line which I had to wear 24/7. I was fortunate not to have any bad side effects from treatment. Tiredness kicks in as treatment progresses and can lead to fatigue, but this generally get better. Happy to try and answer any questions no matter how trivial. I was 64 at the time with T3/G3. Best wishes.
Hi . They tell you the worst case side effects of chemo. Your immune system is compromised and you have to take hygiene precautions and keep away from people with sniffles, but you need to keep a case of common sense. To be honest, after initial worries, I just carried on as normal and went for a pint after treatment. Not that I am recommending that. If you are talking about the 5FU/MMC, this has less side effects than the hard hitting chemo (Gem/Cis). This is administered very slowly over a long period, so does not have the same side effects. As regards hair, the chemo used for bladder cancer is not guaranteed for hair loss as it is in other cancer groups. People in this group have reported thinning, but very rarely complete loss. It had no effect on my hair, but I have very short hair anyway. Best wishes.
Hi MumVG my husband had chemo radiation as well. He was T2G3. He had Gem/Cis chemo for 2 months. Very little hair loss, just thinned slightly. The surgeon said he had to have a complete response to that in order to qualify for the radiation treatment. Luckily he did.The radiation was every day for a month, weekends off. The chemo alongside the radiation was by tablet and didn't seem to cause any issues. He finished the treatment July 2018 and so far is clear. He is 72 years old now, 69 when diagnosed.
During the chemo he stayed away from crowded places, it seemed a sensible precaution. He is very happy to have avoided major surgery so far. He was checked every 3 months for the first year, now moved to 6 monthly checks. Hope that helps.
Yes, they’ve said the drugs she’d have would be a combination of 5FU and mytomicin.
When you read the information leaflets they obviously cover everything so it’s just nice to hear how people have actually got on with taking them. I know everybody reacts differently to these things but it really is helpful.
Hi . Just to clarify, Chemotherapy is not the same as chemoradiation. Chemo is the once a week infusion of the heavy drugs which have the nasty side effects, usually Gemcitabine and Cisplatin. The drugs used alongside radiotherapy (5FU/MMC) are a lot milder and designed to help the radiotherapy work better, rather than treatment. Hope I am not telling you what you may already know. Best wishes.
Hello, I’ve struggled to log in to the new site so I’ve had to join again! Anyway, I just thought I’d update you on Mum.
Mum had 4 weeks of radiotherapy with concurrent chemo on wk 1 & 4 back in March. The treatment went smoothly and she didn’t really have any side effects. She’s been well since without any symptoms but has a rigid cystoscopy tomorrow to see if the treatment has worked. Mum is understandably anxious, least because she was due the cystoscopy 3 weeks ago but it was cancelled at the 11th hour. Does anybody know if she will out anything tomorrow? She’s not had a rigid cystoscopy before so we’re unsure what or who she will get to see in the medical team.
thanks very much. x
Hi . When I had my rigid cysto following my radiotherapy, I was in and out within 3 hours. I was not given any confirmation either way on the results. I was told it looked ok, but because of the radiation marks it was hard to be accurate. They took several test biopsies for analysis and I had to wait a few weeks for confirmation. I also had a CT and MRI scans. Thankfully I was given the all clear. That was nearly 7 years ago and so far so good. Hoping for good results for Mum. Best wishes.
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