stage 4 treatment From Holly

I was diagnosed Nov 2014 stage 3 and since have had usual major surgery. I have had 4 lines of chemo: carboplatin/paclitaxel, Carbo/caelyx, weekly paclitaxel, carbo/gemcitabine, but have never managed 6 months of remission inbetween new chemo.

Recently CA125 has risen to 1330 (Nov) dropped to 1093 (Dec) and now rising in March with CT scan showing progression of disease. Carbo/gem treatment has been stopped after 4 cycles as deemed to be ineffective. A phase1 trial has been discussed but after screening etc I am in effect 'too well' as tumours are too small and it appears that there are no suitable phase 2/3 trials. There is reluctance to continue treatment although it has been suggested that one chemo without carboplatin could be tried as I am resistant to carboplatin, known as 'platinum refactory' although 'response rates from subsequent standard therapies are low' . It has also been mentioned that I have a high level of oestrogen so a hormone drug might be effective. Has anyone had endocrine therapy? and what results /side effects?

Whilst I feel well and lead a reasonable life, I know that the disease will progress rapidly, and I am not ready 'to go'. Has anyone else been in tis situation?

6 Replies

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  • Would a second opinion help? I believe it is something you can request and perhaps you could see someone who wants to support you to fight this.

    Sorry i can't answer your specific questions, but hope you find the right way forward for you and i wish you very good luck x

  • Sorry can't answer but I just wanted to say sorry you are in this situation. There are some hormone based treatments that seem to be effective for some people. I had Tamoxifen but it didn't work for me but there are some new developments since then and more effective drugs.

  • I have also been told that responses are low. Not sure if a low response is worth the side effects but thank you. Holly

  • If you are not being treated at a major hospital, do ask your oncologist if there are other trials you might qualify for at other centres. Also, why not ask for a second opinion, sometimes a fresh pair of eyes can be all it takes to come up with a different treatment option.

    All the best!

  • I've had hormone treatments with not too many side effects. I found it easier than chemo. The one that worked best for me was called Exemestane. It shrunk the tumours a bit for a while. Others have done better on other drugs. But I found it worth trying them, & it gave me a chance to recover more from the effects of chemo before trying another course of chemo.

  • The recuperation period before more chemo drugs has also been mentioned as it would appear my bone marrow is very low. Will discuss it further with the tea. Thank you

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