PPC

[positive]

Hi all, I am having 4 th line weekly Taxol and although the Dr seems to think its working as CA 125 reducing I am having a hard time with weeekly ascitic drainage. They are now going to refer me for a permanent drain. Also having a lot of trouble with lymphodema in my legs. To-day I feel really down and feel that I am coming to the end of the road. I just wondered if any of you have experience of the permanent drain etc and can give me any positives. Thanks and hope everyone is keeping as well as possible.

Sue x

[Hidden]

sorry I cant give you any advice, but I'm sending a big hug your way

God bless

Bex

[jeanv]

Hi Sue. Like you I was having trouble with ascites and had to have a permanent drain fitted over 3 years ago. Went on a trial of Parp inhibitor and was fortunate that this kept my oc stable until September. I am now back on the chemo Carboplatim and am still having to drain weekly. Keep strong and try to be positive .I know it's very hard and some days I get really down but keep fighting. Love Jean xx

[JacJac in reply to jeanv]

Hi Jean, Just wondering if you were on the Ariel 2 Parp inhibitor trial. I am on it at the momment. Would be interested in your experience. thanks JacJac

[jeanv in reply to JacJac]

Hi JacJac. I was on the trial from Feb 2012 until September this year when the drug stopped working. The trial initially was a trial drug Rucaparib with carboplatin for eight sessions . As my Oc was static the drug company let me stay on Rucaparib as a named patient until the drug stopped working. I was really pleased that I had this opportunity. I am now back on conventional chemo carboplatin . I had a few side effects with rucaparib but nothing too drastic . Love Jeanx

[JacJac in reply to jeanv]

Thanks so much for your reply Jean, I am so pleased to hear that Rucaparib worked so well for you. I have been on it for just over 1 year now and have responded well with very few side effects, mainly just photosensitivity. Not certain how long I will be able to stay on it. My CA125 is going up slowly and some of the lymph nodes slightly enlarged so not sure. Back at the clinic tomorrow so will see what happens then. I do hope that the conventional chemo is going well for you and working well. Good Luck. Let me know how you get on.

Love. JacJac

[positive in reply to jeanv]

Thank you Jean, I see you have been through such a lot and still positive.I was drained yesterday and request made for permanent one. Also had CT and see consultant tomorrow to see what is going on and why fluid increasing when Chemo meant to be working. Feel better today and went to see 3 of my grandchildren so never a dull moment with them. Take care and thanks again. Sue x

[Btte]

Hi Sue sorry I can't help with your problem, but I hope Jeans reply has and that you are feeling better today. Sending lots of love Bridie xx

[marydagnew]

My friend got the permanent drain and really feels better for having it the less fluid building up the more comfortable she is. She is a lovely lady her name is Annie on here as Celtic she'll contact you when she sees your post best wishes -stay strong x

[JacJac]

So sorry to hear you are feeling so down. Totally understandable though. I do not have experience of a permanent drain although I did have ascites which was drained prior to chemo and surgery. That was 3 years ago. Wish I could help more but sending you virtual hugs. Hopefully the lady mentioned above will contact you with her experience. As others have said stay strong.

Love JacJac xxx

[positive in reply to JacJac]

Thank you everyone is so kind and helpful, take care. Sue x

[Celtic6648]

Bloody I pad would not let me reply please see post don't worry

[Goingcrazy]

A huge huge virtual hug, keep fighting there is no end of road! Xoxo

Best wishes