Caelyx now

[angeladale]

Oh so confusing ...my CA 125 has on four occasions , along with horrid ascites , have been absolute indicators of active disease . CA now 21 ...double the number since the summer ...and no fluid . New disease on scan has prompted Caelyx which shall commence in a fortnight . The thinking is that the cancer has changed metabolically and no longer registering in the same way . A shape shifter .

This will be fifth line and my fear is the uncertainty , of what drug after this (assuming it works for a bit ) . Not suitable for any trial ...have had the platignums,

Gemcitibane , Van den Burgh , taxol , now caelyx .

I am sturdy in body and healthy if not as fit as I was ...and lucky to be alive , I do feel that .

But know one seems to know what the next step might be ...feel very much at sea for first time in four years ....

[angeladale]

Just noticed awful spelling , another indicator of chemo brain ! 21 very low but " double " is the issue here , not wanting to wait for ascites so moving quickly , I suppose .

[Whippit]

Oh Angela - I'm sending you a big hug. You've always been such a tower of strength and have amazed me the way you've coped with all the treatment - and that Van den Burgh in particular.

It must be overwhelming to be told the cancer is a shape-shifter. I didn't know that could happen. I just hope Caelyx works for you. Have you had it before? I've been told that will be my next line alongside Carbo-platin but haven't been given the date yet.

Keep posting. Don't feel you're alone with this. xxxxx much love Annie

[angeladale in reply to Whippit]

Thank you ...that's the point . This morning for the first time since original diagnosis , I feel backed into a tight corner . Always a fighter but I do feel the options are running out ; I had allowed myself to believe that we could go back to platinum or taxol , but as of yesterday that certainty has dissolved . If they don't try those again , how do we know if the cancer is platinum resistant . I ' be missed a trick somewhere !

By the way , no major tumours nor invasion into organs but smears and patches ...bad cleaning !

[Madz]

Hi lovely lady I'm going back in 2 weeks for a definite answer but I think it's my consultants way of giving me some space, new disease just like yours but ca 125 is 6 and feel well. Struggling to get my head round it this time, NICE guidance is for caleyx on recurrence but I am having carboplatin as well same as Annie. This will be third line and I really feel for you as I has hoped for a longer time off - finished second line last sept. You are a strong fit woman so you will face this hurdle as you have the others but I feel your anxiety and can just send big hugs and know that we are all here and can compare notes - oh the joy of it all xxxx

[angeladale in reply to Madz]

Oh , that is so kind of you ; This will be my fifth " go " and apart from feeling on the edge of flu all the time and with a raised temperature , I do feel strangely fine .

Odd , so odd the low CA 125 when that has always been the marker in my case .

Having had many drains for ascites , mostly as emergencies , I can now see that starting straightaway is a good thing ! It's always a shock when it comes back , no matter how often it has . Thank you for airwaves hugs which are much reciprocated ...yup , we can all compare notes . xxx

[Celtic6648]

Caelyx . I just had my fourth mid scan showed marked improvement , hardly any Side effects . Iv been drained twice like you , cancer us not in organs but here and there , I do not look like a person with cancer . Try to live each day as it comes . Hope you can take Caelyx as you keep your hair . I did not even take the sick pills last time and never take steriods take care

[angeladale in reply to Celtic6648]

That's great and so encouraging ...I have had about six drains and cannot bear the idea anymore .

Hope this quick attack means we'll get ahead of the bugger !

I am taking note : and hope to bypass the steroids too .xx

[francescahannah]

Hi Angela, I do understand your feelings right now and it is only human to feel lost with this horrid disease sometimes. staying hopeful and positive may be a great goal but not achievable 100% of the time. I'm about to start my 6th line chemo which may be carbo and caelyx but I was diagnosed in 2004 and have been really well and fit and lived really well in between treatments . Sometimes I feel lucky to have done so well although obviously options are running out for me too but I'm hoping I get some more time after this chemo to get my 60th birthday party in november and see my gorgeous granddaughter, Lily a bit longer, she'll be 1 in March. Its my understanding that the cancer gets immune to various chemo drugs after so many treatments and obviously our bodies can only take so much. I'm amazed how I recover each time. Anyway Good luck with your treatment.

love Francesca x

[angeladale in reply to francescahannah]

Francesca , you are absolutely right , I am bad at giving myself " moments " to rage , I suppose ! I understand the idea of immunity to drugs , it's just that I cannot accept the NICE guidelines as an absolute !

You are a truimph though and a wonderful example of how it has worked , and yes , once out of chemo stints we seem to do well . You will get to your big birthday and Lily will spur you on .

Good luck to you too .

Angela x

[AnnieMae]

Hi Angela, so sorry to read your post. You have gone through so much it's not surprising you are feeling like this. I've not heard of this disease 'shape shifting', you really don't need that on top of everything else. We are all here for you so please 'talk' to us when you feel the need. We are all stronger together.

Love

Annette xxx