Hi all, just wanted to give you an update that my mum has restarted chemo after surgery. Her treatment consists of the usual Carbo+ Taxel every 3 weeks. However, she had a mixed response to the chemo during cycles 1-3 in that her CA125 went down progressively but the ascites did not subside until she had debulking surgery. So she is now on Avastin aswell as the Carbo/ Taxel cobination. She was sent a copy of a letter today from her oncologist to her GP which conformed her chemotherapy response score which is 1. I Google'ed (I can feel you all shaking your heads already!) and I managed to find out that means she had a minimal response to chemotherapy which I guess we already knew and I know that her CA125 did respond in someway to the chemotherapy but I can't help but doubt today, whilst I see how the chemo has affected her, if the chemo is working. I have to admit that I think the news about Clare really affected me aswell. Any advice from those who have had a mixed response to chemo would be greatly appreciated as I haven't seen women discussing a mixed response in this forum before.
As an aside, whilst all the above is going on, I've been nominated for the Health Unlocked Health Blogger Award within the carer category. I have to say that it's nice to have a good distraction from all of the above as otherwise I think I would go crazy. I'd appreciate it if you could take a look and vote here healthbloggerawards.com/ since I really want to shine a light on ovarian cancer and raise awareness, I struggle to fathom every day why so many women continue to be diagnosed at such a late stage and would like to ensure they don't have to go through the pain and suffering that you ladies have to on a daily basis.
I had a mixed response to my second line of chemo. It was clear at the half way stage that not a lot was happening, but I plodded on with it, hoping for more response. I felt discouraged, but decided to carry on with whatever treatment the oncs could suggest. In my case it was hormone therapy next, although I know not everyone's tumour is hormone responsive. I hope there may be more response for your mum now she is on Avastin as well. And there are other treatments available if she needs something else later. Di
Thanks for sharing your story Di - that's really helpful especially reading your earlier posts to read that you are now on 3rd line chemo! I've also not heard of hormone therapy as a course of treatment so that's interesting & worth bearing in mind that chemo is not the be all and end all. My mum is lucky to have an oncologist who really seems to know what she's doing and we trust her. Though she always seems very busy & has little time for us, she really does instill trust so we believe she & the MDT know what they are doing.
My CA125 went up on the first two doses to over 200 dose three down to 196 and dose 4 to 288. I pulled the plug on it. I've been following a few stage 4 women who decided to stop chemo and are doing well on extra exercise. I see the consultant tomorrow as the registrar just had no idea. I don't know what's next but I feel a zillion times better without the chemo. I will have a new CA reading tomorrow so although I never say never I'm interested in his plan if he has one.
Lily-Anne, you've been through quite a journey yourself over these years & it's lovely to feel your calm and relaxed attitude through your words. Yes, my mum and I love exercise and post surgery we would walk up to a mile a day. We hope to get back to that soon.
Hi I'm also interested in other ladies having a mixed response as my mum is on caelyx but her ca125 is going up. I too was quite affected by Clare's news. Stay strong and congratulations on your award!
It's strange as I never actually met Clare though she left some kind words on my posts but do feel some form of connection with her. Thanks it truly is just an honour to be nominated! I've heard a lot of women say they are on Caelyx so it seems a strong contender after carbo & taxel. I guess we are both plagued with the question "Is it working?"
My chemo was fine but I just wanted you to know I've voted for you and also for another ovarian cancer nominee in a different category. Good luck ❤️Xx Jane
I understand your frustration. How is a response measured anyway? My oncologist tells me ca125 can be raised for lots of reasons non cancer related. And scans don't detect v small deposits or really identify spots as being definitely cancer .
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