Secondary Ovarian cancer stage 2

HistorygirlHistorygirl Posts: 3
edited December 2018 in What's On Your Mind Today?
Hi, I've just had chemo no.8 carbo platin & taxol combo, which now shows signs of not working. They are discussing changing my chemo in January.
I am being gene tested & so results show I have not inherited "Lynch syndrome" which they say is good news, now waiting for results for BRCA 1 & 1, & if I can go on inhibitors. 
I have had to request all this myself & want to ask about imuno/stem cell treatments, has anyone out there gone down this pathway?
I just can't get my head around that you are not offered treatments apart from chemo, you have to do the research yourself & then feel like your asking for the world.
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Comments

  • LouiseJLouiseJ Posts: 42 mod
    Hi @Historygirl

    You must be exhausted continually with having to fight to get treatment and research it, on top of dealing with the effects of cancer. I cannot begin to imagine, that must be so hard for you. This must require an extraordinary amount of strength to persevere and keep going. 
    I have no experience of what you are going through, apart from chemo, but a different one for breast cancer. 
    I just wanted to let you know I am thinking of you, I hope your oncologists are able to find an alternative chemo or treatment.

    Welcome to the community, hopefully someone else may have some insight that will help.

    Lou x
  • HistorygirlHistorygirl Posts: 3
    Thank you Louise J. Yes its like walking up hill in treacle at times or pulling teeth, don't which is more apt.
    Example is I asked in June for my Oncologist to contact the Royal Marsden in London, as I had a couple of queries & they were trialing this particular thing, I'm still waiting for a reply & I keep asking but nothing is happening & Im getting really fed up with the lack of feedback. I'm not giving up they don't get rid of me that easy. I plan on doing all I can to fight & get the bast treatment I can.
    I really hope all goes well for you too. Chemo is a B....
    Take care x
  • VronVron Posts: 12
    I have had a similar experience with Carbo platin and Taxol, there has been little improvement. My Oncologist  stopped it after six treatments and when I asked about alternatives told me it was the top treatment. I am currently on Avastin but am  worried about what will come next. I haven't had a gene test either. It looks as if you are right and have to do your own research. I mentioned Niraparib a few sessions ago and she hadn't heard of it even though I saw it on national news.
    I hope you have more success than me, take care x
  • HistorygirlHistorygirl Posts: 3
    Hi Vron,
    I have now had my gene test results which I had to chase, & I don't have an inherited gene,  so am unsure of my next option until I see oncologist on the 21st. I will let you know the name of the chemo too when I see him.  I am also going to ask about immuotherapies, which research says can be very successful. 
    Be strong, it's very frustrating that you have to ask or tell them about new treatments, but it seems to be the way unless you have large pots of money to go private.
    Take care x
  • VronVron Posts: 12
    Thank you, at least you are more informed now, I hate asking for things but you've just got to do it. 
    Good luck on the 21st, 
    Take care xxx
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