continuing treatment

Anybody tell me what happens when you have been having treatment on and off for 4 years. I am still on chemo, but my count this week has risen to 617, so obvioulsy something is happening. How do I know if the cancer has spread elsewhere? This is the 5th different drug I've been on, how long can I carry on like this? I know all the new people are worried, but I'm not wondering what happens next! Anybody help me out?

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  • Hi Greybadger, that sounds tough, I wanted to write to offer support. I haven't experienced what you have but I know what you mean in a way about being in the next phases once the initial shock and treatment have passed. I finished my treatment last October (stage 3C) and haven't gone into remission as my CA125 has stayed raised and more drugs seem to lie ahead. Have you thought about other approaches? I have been looking into the kind of treatments offered in the USA such as the issels clinic - if you have a look on their website there is a testimonial from one woman who had advanced ovarian cancer. Wishing you strength.

    Jane

  • Hi Greybadger, so sorry to hear things are so rough right now.

    I just thought the following might be worth exploring? When my mum was diagnosed last Nov (3c) I read SO much on the internet and something that really stood out was an OC survivior from America saying "you must get your biopsy tested genetically". She had just about exhausted all standard chemo options and then some young doctor ordered some different tests to be carried out and as a result she was put on a totally different treatment plan which finally worked after years of trial and error!

    So, there is a bioscience company called Caris Life Sciences in the US who do something called molecular profiling - something very technical which I won't try to explain but basically they carry out tests on ideally your most recent sample of tumour tissue. They work out the molecular profile of your tumour so that the most appropriate treatment can be given as a result; they claim it to be a tailor made treatment plan. They then issue a report which aids your oncology team. A specific ovarian cancer test called Caris Target Now Ovarian Profile is now available. I think it is quite expensive (around $5000) but it may be really worthwhile. It is something we heard about and if my mum's OC ever returns we will definitely be going down this route. I have had much communication via email with a lovely lady called Olga in their client services department and they accept samples sent from overseas.

    Have a look at their website (carislifesciences.com). Who knows if it works but it does sound very convincing and as I said we will definitely be using them in the future if we need some extra back up!

    Good luck and if you want to know anything else about it please let me know!

    Jess XX

  • Dear Greybadger

    I am one of the support line nurses and I am sorry to hear that your Ca125 has gone up while you having treatment.

    I wonder what the hospital are suggesting? If you would like to discuss things further do feel free to give us a ring so we can talk about the situation.

    Depending on what the hospital say it may me worth asking if there is a trial that you can go on. There are lots of people with ovarian cancer who have had several lots of different treatment in between having periods of good helath

    Best Wishes

    Ruth P

  • Hi Ruth,Thanks for your suggestions, - at the moment I am waiting to see what the Oncologist in charge thinks, my specialist nurse has forwarded my e-mail to him, so she will follow it up if he doesn't respond. She says she can bring the CTscan forward for me if necessary. I just wonder if it is worth having another week of chemo when it doesn't appear to be doing anything now.

  • What chemo are you having at present? It might be worth asking if you can delay the chemo by a week when you might know a bit more from the oncologist. It seems a shame to have to have another dose if it is making you feel rough and it appears not to be doing anything.

    Ruth

  • Hello Grey Badger

    A while since you wrote these messages. Hope you are doing ok. I too have had chemo for the last 4 years after being diagnosed with 2b ov. Now on 5th line chemo. I'll keep my fingers crossed for you Always here to listen

    Soapsuds

  • Hi,

    Glad to know others get this far along the line!!

    What drugs are you on for 5th line? My drugs are gemcitabine and Treosulfan, give once every 3 weeks. Where are your problems. Mine are with my breathing as the growth is pressing on my lungs, so not only do I get fluid in the lungs , I'm not sure what is what! I am so frustrated as I don't feel bad in myself, but can't do anything, or walk far as I have no breath or energy to do it. I was hoping things would improve after the first treatment, but two weeks in they haven't made any difference. I think I will have to have another drain soon if they don't improve.

    Viv

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