Hi all, i felt very low yesterday, i saw my oncologist who said my ct scan was looking worse. He wants to discuss it at his friday meeting. He has stopped the caelyx. He said i would probably be given 3 options.
1. Have a break
2. Start weekly taxol
3. Referrel to Marsden. As you can guess i am quite gutted but i have some lovely friends who sorted me out yesterday. That poem made me smile.
Hi
Am so sorry to hear your latest treatment has been stopped . I have read a couple of posts recently from ladies who have been referred to the RM as it is a centre of excellence for OC.
I am stage 4 and have already decided that when needed I will get a second opinion from either RM or the Christie (Manchester) .
I know this decision isn't an easy one as travelling for treatment can be very tiring and expensive but may be worth considering even if just for a second opinion on your treatment options . There have been lots of positive things happening in trials so stay hopeful.
Am sure some other ladies will post soon who have been treated at RM .
Sending a big hug and best wishes for whatever you decide is best for you . Love Kim x
I am hopeful they will recommend the RM
Hi Antheamary I'm so sorry to hear you are in this position but I guess there is no point in having a chemo that isn't working...so probably sensible to stop but of course it leaves you in limbo.
The uncertainty of this disease is such a wind up...we get spooked by everything and expect an ambush at every turn. Here's hoping they sort you out with something that does the job...sending hugs xx
Yes i was so upset yesterday. I try & keep positive but i was really knocked back.
Hi Antheamary, I am so sorry this chemo isnt working for you. If it was me I would go for a referral to the Marden I have heard so much good things about this place.
The poem made me smile as well. Good luck on what ever you decide on. Take care Cindyxx
Thanks cindy , i like your username.
Hi Anthea. I have already "spoken" to you but just want to re enforce that we are all here for you.
jenny
Hi Anthea,
I'm sorry to hear that caeylx hasn't been working for you.
I'm just home from a second opinion trip to the RM, and I'd say you have nothing to lose from visiting and seeing what they have to say. I've written a post summarising my visit, so you'll be able to find it on here.
Vicki x
Big hugs Anthea. First news always crushing but the bounce back does happen. You do have options. Good luck with the journey going forward. Xxx
Exactly my scenario yesterday at Christie's. I have had two treatments of caelyx since recurring in May, but have felt progressively worse since - so I had a gut feeling it wasn't working, confirmed by continuing high CA 125 ( now in top 3000's) and symptoms of much headiness and body weariness. So no infusion today as planned . Also some fluid on the lung causing breathlessness which may have to be drained soon and a scan ordered sooner than original end of August to check what's going on. I have also been on steroids for a few weeks.
How many caelyx treatments did you have and at what point did they send you for a scan? I was originally told it would not be until towards the end of the 6 month treatment but I think events have taken over...
Have been toLd there are many more options but also feeling immensely down as I wonder how much more I can take....
Janet .....trying to get over the rainbow 🌈
Hi janet, quite a similar story. I had x3 caelyx. Then ct scan as my ca125 842. Will find out more on friday feel awful today tummy ache. Keep in touch.
Hi anthiamary, calix didn't do for me either so was put on weekly taxol which I did for eighteen weeks. Biggest side effect for me was fatigue but it's doable. I did loose my hair. Good luck and sending hugs. Xx
I might go on taxol next. Shame about the hair. Did it bring ca125 down?
Treatment after caelyx
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