To all the kind ladies who posted after I read my oncologists letter to my gp stating
my treatment options were limited after caelyx.
I saw her yesterday and she said yes it was misleading, what was meant was my options for trials were limited , not treatment, so just to reassure anyone on caelyx it won't limit your treatment options if you go on to
another regime .
I am starting cistaplatin next Monday plus another which I can't think
of the name on but it will be by tablet form. Hope you are all well as can be and looking
forward to Xmas. Thank you again. Bobbie
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Bobalu
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After Caelyx I went on the Rotterdam which is Cisplatin./Etoposide Tablets Unfortunately it did not keep it at bay but it does work for some,. I am now halfway through Cisplatin/Gem so you see there are always other options and combinations.
Have a good Christmas.
Love Patx
Thanks for sharing Bobbie. Did you have a break between your caelyx or did you go straight onto tablet chemo?
Thanks for that. My mum's currently on caelyx. It's giving her horrible side effects despite lowering the dosage and ca 125 has continued to rise. Docs don't seem concerned, but on all her other courses of chemo her ca125 has dropped dramatically so I can't help feeling slightly concerned. Even though they say that caelyx is a very slow acting drug. I think we should push for an early scan.
I had a similar experience on Caelyx my ca125 never came down very much at all. I had very few side effects except for the sore mouth. I had a scan after 5th treatment.
Thanks for letting us know. This isn't the first example of people misunderstanding what the docs have written. We must remind them to be careful, but also remember that people who work in oncology can be a bit negative sometimes.
I am glad you got it sorted out Bobbie. I do feel that communications need to be improved especially when we are copied in to GP letters and something is mentioned that they haven't said directly to the patient. A number of ladies on this forum including me have been sent into panic by reading info sent to GP. Oncologists must treat us as patient partners so that we get the long detailed explanation and don't get nasty surprises when it is written up for GP colleagues. All the best for you and your treatment xx
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