Now to try topotecan: Hello everyone, I’m new... - My Ovacome

My Ovacome

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Now to try topotecan

Fishfinger4 profile image
11 Replies

Hello everyone, I’m new here and wonder if anyone has had a similar experience. I was diagnosed with probable ovarian cancer in September 2019, although the histology was, apparently, not easy to classify. I had a few rounds of carboplatin/paclitaxel, which help things at bay for a while, then 3 doses of Caelyx which apparantly was not working although I felt well on it. I’ve now been offered topotecan, i.v., five days on, two weeks off, and wonder if anyone else has tried this and how they got on. If this fails I may have another biopsy as there may then be more options. What a nasty disease this is - I now have significant back pain which is annoying as I loved my walks. ☹️

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Fishfinger4
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11 Replies
Neona profile image
Neona

The biopsy may give you the info needed to look into clinical trials.

Cbyrdie profile image
Cbyrdie

I have not heard of topotecan, but I’d get a biopsy then they can direct your treatment with better information as to which one you’re fighting. Best wishes ❤️

AusTig profile image
AusTig

My oncologist is suggesting topotecan for me as I have developed platinum resistance and have reactions to a number of drugs. I have not heard of others on it, so, like you I would be interested if anyone has had it.

Fishfinger4 profile image
Fishfinger4 in reply toAusTig

I am due to start next week, and will let you know how it goes, AusTig.

AusTig profile image
AusTig in reply toFishfinger4

Thanks. I will be interested to see how you go. My thoughts and prayers are with you.

Fishfinger4 profile image
Fishfinger4 in reply toAusTig

Hi. I completed my five daily infusions of topotecan yesterday. It was quite straightforward, half an hour for the topotecan plus a bit of time for flushing etc. I’ve had no ill effects so far but was given antisickness with the infusion so that may change over the next few days. Now for two weeks off, then for another week of daily visits to chemocare! I hope if goes well for you, keep in touch.

By the way, I had a fierce reaction to paclitaxel so was a little wary of a new drug, but had no reaction at all.

Sanssa profile image
Sanssa in reply toFishfinger4

Hi. Did Your ca125 numbers gone down?

Fishfinger4 profile image
Fishfinger4 in reply toSanssa

Yes, I’ve now had 3 sessions of topotecan. I’m off it now as I became quite anaemic and was asleep a lot, and a scan showed slight progression in spite of the ca125 coming down. They are reassessing at a multidisciplinary meeting next week.

Sanssa profile image
Sanssa in reply toFishfinger4

Thank You for reply. My mum is on topotecan as well. 5 days on, 2 weeks off. After first five daily infusions, ca125 doubled, thinking that its not working for her... On Monday mum will see her oncologist.

Fishfinger4 profile image
Fishfinger4 in reply toSanssa

Best of luck to your mum.

Sanssa profile image
Sanssa in reply toFishfinger4

Thank You, best of luck for You either!

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