Recurrence

Hi lovely ladies, I'm feeling like the stuffing's been knocked out of me today, confirmed recurrence of my clear cell oc yesterday , several spots in abdomen and also lymph nodes under arm, only 3 months after finishing chemo. Onc says no point in carbo/taxol again, and not sure that another standard chemo will have any effect on clear cell, thinks a trial may be my best option so is looking for a suitable one, but final decision is up to me, my head is all over the place xxx

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  • Hello NannyT, and what a lovely name. Anyway, I too was diagnosed with clear cell OC - 4 yrs ago, and following initial chemo of carboplatin/taxol and 2 recurrences and more chemo and 2 yrs of avastin, I am still here. I finished my last round only yesterday and was given good news. The tumours had spread firstly to abdomen and then to 2 areas of my bowel. But no follow on surgery or radiotherapy required or given.

    Not sure what 'trial' you may be offered - but do let me know, as I live in Ireland and there doesn't seem to be any trials - despite pushing my Oncologist to begin one. (yes, I am pushy, but life is too good to give up). listen and trust your oncologist as I do - again, despite the rows.

    sending you best wishes as you struggle to decide on treatment options.

    Love, Daisies

  • Hi Daisies, so glad you've had good news, and you're right when you say life is too good to give up, so I will pick myself up again from the setback and hopefully make the right decision xxx

  • Oh Daisies I do so love your reply, great you got good news yesterday, I would say it was a long long day for you but now all is good and you can enjoy a chemo free Xmas and roll on 2015. They do see to be starting the Trovax trial in the UK so hopefully they will follow on here. I will also ask onc at end of apt in January re this trial.

  • Hi Nanny T. I have a friend with clear cell, it often recurs quite soon after chemo. That doesn't mean all is lost. There is a lady who posts here who has been treated by surgery for her recurrences, and as far as I know she is doing well. What you need most of all is a pro-active, energetic oncologist. There is a web site called libbyshope.com which gives lots of information about clear cell. Radiotherapy is sometimes used instead of chemo. I know that there have been a couple of trials of different chemotherapy regimes, specifically irinotecan and sutent, which have shown promising results. There are treatments out there, I hope you will find something that works for you. Meanwhile, please take care of yourself and try to enjoy Christmas as much as you can. Thinking of you, Vx

  • Thanks V, I did ask if surgery was an option but he didn't think so because of the wide spread of the new 'spots', perhaps if the lady you mentioned sees this she might be able to tell me more. You have given me lots to look into, much appreciated, and hope you have a great Christmas xx

  • Thinking of you m x

  • Thanks xx

  • Hi there, I have clear cell, and have been treated for 2 recurrence s with surgery. I had a liver resection in 2012 and the abdominal lymph nodes resected this year. I would also like to hear of any trial that's around as my onc is quite up for trying things. She wanted to give me carbo taxol after last surgery as she wasn't sure what else to do, so if there's something else available am sure that she would look into it. I know that she pushed hard for both surgeries as the surgeon said they only do a max of 2 a year for oc and mine was over and above that.

    Take care

    Sue

    X

    P's forgot to mention that I am 5 years diagnosed at stage 3a

  • Hi Sue, Thanks for telling me about your surgery, maybe I should ask again as my onc seemed so sure it wasn't an option. I will let you know when I hear back about the trial, Trudy xx

  • Hi NannyT. I know exactly how you are feeling. I felt that way too back in September when the oncologist told me that my cancer had recurred, just 8 months following chemo ending. To say I was gutted would be an understatement. I too have lymph node involvement, 3 in my pelvis. The lymph nodes work on the immune system so I am taking a 7seas Immune Support Plus tablet every day. I'd do anything to try to keep it at bay for a while longer! I don't know an awful lot about clear cell but I think there are quite a few ladies on this site that have that type too. Its good that your oncologist is looking for a trial for you. Good luck and let us know if you get one. Ann xo

  • Thanks Ann, I will look out for those tablets when I'm shopping today. Hoping onc will get back to me soon, do you know what treatment you will have next? Trudy xx

  • That is a good idea as I have come down with a bad bout os Sinus trouble. I did start taking Zinc and Vit C to counteract it but have ended up on an antibiotic. Just wondering have you told your onc you are taking this. I cant see any harm in it but my onc doesnt want his patients taking anything. Then again am on Avastin

  • Hi, I started taking them when going through 1st line treatment as my WBC count fell so low. It was actually a consultant that my daughter works with bought me them. He swore by them as he was also going through cancer treatment himself, he had started taking them to boost his immune system. I have a pharmacist friend and she told me they would do me no harm as they are vitamins. Its herbal medicines that the medical profession do not like us taking. Ann xo

  • Thank you very much for your reply, I will get them as soon as I finish this antibiotic I am on for Sinusitis. If they are good enough for a consultant, they are good enough for me and as you say, they are not herbal and are properly patented

  • Well they told me in Sept if they could get me through a year from 1st line ending I would go back on carbo/Taxol. If not then they were thinking of Caelyx. The year is up on 18/12. Hoping I can be left for another 3 months as feel well enough in myself. Keep well Trudy. Ann xo

  • Maybe you could try for the Trovax trial which is being run in the Uk. My second line was Gemzar and Carbo and that did work. My third was Gemzar and Avastin and am still on the Avastin. Have Sinus issues which are a nuisance at the moment but all is good with the scans and 125s. You should talk to your onc to see what else is available. Other options seem like Caelyx which I didnt have yet. I wish you the best and you make the decision you feel is right for you

  • Thanks, will look into that trial, there are so many different combinations, hopefully I will be luckier this time xx

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