Topotecan & hair loss: Hello, I’ve just come off... - My Ovacome

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Topotecan & hair loss

jane2014 profile image
6 Replies

Hello,

I’ve just come off the Sierra SRA737 trial which sadly didn’t work for me and next week I start on Topotecan.

I’ve read that hair loss is a likely side effect so I enquired about using a cold cap during treatment as it worked really well for me when I was on weekly Taxol. However, the nurses at the unit have said it’s not necessary for Topotecan.

Has anyone any experience of this and indeed any other pearls of wisdom relating to this regime?

Jane

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Mlowery profile image
Mlowery

It has been suggested my next chemo could be this. I too did cold cap on taxol and would also like any comments

jane2014 profile image
jane2014 in reply toMlowery

Hello Mlowery,

I went ahead with the cold cap today for my first Topotecan treatment. I’ll let you know if I keep my hair! Went and got it cut and coloured yesterday. Thought I might as well go out with a bang. Going on hols next week. It should at least last that long.

All the best, Jane

Yoshbosh profile image
Yoshbosh

Hi Jane,

I have no experience of topotecan so I can’t comment on that, but would you mind if I ask you a question about the trial? I signed consent forms for the same one several months ago, but due to bowel obstructions, ended up rushing back into chemo instead. Did the drug simply not work at all for you? If I remember correctly, it’s a solid tumour, rather than ovarian specific trial, isn’t it? It’s one that I was considering following up on in my next review with my oncologist.

Vicki x

jane2014 profile image
jane2014 in reply toYoshbosh

Hello Vicki,

I was on the trial from early Jan to end of March. They scanned me at the start of each 4 week cycle and their criteria for ‘stable’ disease was less than 20% growth.

My first scan showed 9% growth and my second was 19%. At the same time my CA125 was increasing rapidly though the clinic were less interested in this. I had several side effects (rash & high temperature) and as I was borderline ‘stable’ I came off to start a more conventional chemo regime.

Weirdly since stopping the trial and starting Topotecan this week, my CA125 has dropped 20% even though I wasn’t in treatment in between, but without a scan, I don’t know if the tumours have actually reduced but there is a possibility it may have been doing some good after all. As I’ve now started Topotecan I won’t really ever know.

As you say, this isn’t a specific OC trial and my understanding is that it has had some success with other cancer cohorts. I think it’s definitely worth exploring with your Onc.

Good luck and very best wishes

Jane x

Yoshbosh profile image
Yoshbosh in reply tojane2014

Thank you for the information and sharing your experience. I was on the ONX trial last year, and unfortunately had to come off it due to the first bowel obstruction. I can’t help but wonder if the drug would have helped if only I had had more time on it, rather than just one cycle.

I hope the topotecan does the job for you. Are you having it on its own?

jane2014 profile image
jane2014 in reply toYoshbosh

Thanks Vicki, although I only started on Thursday and have no idea if it’s working, I do feel much better on the Topotecan. I haven’t needed any painkillers, though that may just be the steroids doing their thing. I am having it on it’s own.

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