Hi girls, I haven’t posted in a while as nothing is working. I have HGSOC diagnosed in April 2021. I had 6 sessions of carbo/taxol with reduction. A year on Avastin and Olaparib with progression. Then my onc tried Carboplatin and then Caelyx neither of which worked and the size of my tumour is what it was at the start of treatment. I’ve never had surgery.
I’ve just begun Paclitaxol, two weeks on, one week off and my onc says, if this doesn’t work there is nothing else. Does anyone know if there is something else I could try? Clutching at straws here. Gill X
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I was told in May by my oncologist that there was nothing more to try after carboplatin, paclitaxol, Gemcitabine and Caelix and she handed me over to the palliativecare team.
But then she called me back a month later to try an oral chemotherapy drug called cyclophosphamide. It's meant to be only end of the road maintenance drug. I've been on it for two month now, have no side effects, feel better, have some more energy and the tumor marker is dropping.
It may buy you some time.
I live in Australia where it is not often prescribed, my oncologist had not used it before.
Hi Cariann I too have had carboplatin, caelx, paclitaxol, gemcitabine and niraparib. My oncologist is going to prescribe the tablet cyclophosphamide to me and it’s reassuring to hear you have been quite well on it. I was first diagnosed in 2013 so haven’t done bad recurred 2 years ago. One question have you lost your hair or has it thinnened?
Hi Char 5,I have not lost my hair. It's a bit uncontrollable, sticking up, but it's there. I only lost it all during the carboplatin/ paclitaxol combination.
I am on a small dose of dexamethasone for nausea, but have no side effects after two month, and the tumor marker has dropped significantly, more than expected.
My oncologist warned me that this can change any time, drug stops working, side effects developing, but l enjoy this extra time!
Thank you girls. Like you Cariann, they’ve put me on palliative care. I’m having a CT scan on Friday, so, depending on what it throws up, I’ll ask about cyclophosphamide and a second opinion. Do you think it might be too late for surgery at this stage? Gill X
You should speak to the researchers at Clearity. Have you had your genetics done? what kind of ovarian cancer do you have? Where is it? What stage? Clearity can look at all that information and match you with trials that may show benefit.
You have to be your strongest advocate. I have a friend who was diagnosed by an incompetent oncologist who said she was hgsoc3C. She went through 6 infusions sms had growth. An oncologist nearby told her to just go enjoy her life. Wtf? She went for a 2nd opinion to MDA in the US and turns out they misdiagnosed her cancer.
It’s Low Grade and the treatment was never the right treatment for her cancer in the first place! So, she’s started all over. Her’s is an extreme case, for sure, but get to the best cancer center you can find. Travel to it, don’t just go to a colleague of your current oncologist. Make sure they’ve checked all the boxes.
If you’ve never had surgery then you’ve never had your tumor tested, I assume? Did they do a biopsy? Do you know if you have mutations? Are you folate receptor positive? So much information to know for what would be the best for you.
Hi Gill, sorry to hear that so far nothing has worked for you. Have you questioned why surgery was never an option? Is the tumour in a place which makes an op out of the question? It just seems strange that your oncologist has never explained the reasons why you couldn't be operated on. Maybe he wanted to try shrink the tumour first & then operate. You need to start asking the questions & if you are overwhelmed by it allwhich is understandable, bring a family member or friend with you to fight for you & get some answers. Sometimes they can take in the information better because its not them thats going through it all. Have they suggested Gemcitabine either on its own or with Carboplatin? I have been on this regime & it was working but unfortunately I couldn't stay on it any longer & I am on a parp inhibitor Niraparib now. I have had a Ct scan during the week & waiting for the results now. Hopefully the Paclitaxol is working but if it isn't, dont give up without a fight. It definitely sounds like you still have a lot of strength left in you yet. Please let us know how things are going for you & I wish you all the best Xx
Hi 👋 sorry to hear that your not getting anywhere with treatment, I agree with everyone on 2nd opinion, it's worth fresh eyes! Also have you been offered a parp? Olaparib? Worth a try x
I’m not aware of the guidelines to operations, but I had an emergency operation to remove a tumour which was 13x10x7cm, so I’d be inclined to ask for all the reasons why you’ve not yet been offered that? Wishing you the best of luck xx
Can you ask them to refer you to a Research Centre?
I was recently referred to the Sarah Cannon Research Institute in Harley St, London by my Oncologist. (I live about 80 miles from London and their staff told me they have people coming from a lot further than me).
If they have a trial they think might suit they will ask you to go for a consultation etc. (Expenses paid).
Hi, sorry to hear your situation. I tried Letrozole and it worked. My oncologist was unsure about it because testing failed for me - the sample was not viable. It has given me 10 months chemo free. Side effects are those of menapause but doable. Perhaps worth a go if you are making progress with your current treatment. A second opinion might be useful too. Good luck.
I agree with the other posts . Please get a second opinion and ask why surgery has not been offered . Maybe there is a reason, but you have nothing to lose by asking a surgeon who specialises in Ovarian cancer — as other posts have said, you have to fight for yourself for the best treatment . Wishing you the very best. 🙏❤️
So sorry your going thru this I'm in the states like another Teal Sister mentioned with her Friend you can request a second opinion thru MD Anderson you can do it remotely I don't think the out of pocket is overly expensive. Hugs from Chicago
I am sorry to hear this. I have been on paclitaxol and I found out last week that it is not working. I agree with the brave voices on this forum. Push for a trial and another opinion. I found the information on the options others have had really helpful. I have also found your stories have helped me. Thank you.
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