Stage 4 for 8 years, facing 5th Line treatment, welcome any input dear friends

[nannacarol]

Hi ladies

I was diagnosed nearly eight years ago. Had Carbo/Taxol x 3 then surgery then finished another 3. Was blessed with four years remission. Had 2nd line Carbo/Taxol which resulted in almost complete response. This lasted about 6 months and has Gem/Carbo which at first worked then after four treatments CA125 started to rise again so this was stopped. Had 18 weekly Taxol, again CA125 came down to normal. Finished this in November 2014 and had a scan last week. Went to outpatients this morning and the scan showed increase of peritoneal nodules and disease progression. I have an option of Cholrambucil oral chemotherapy (told 10% chance working), or Caelyx iv chemo (20% chance working) or no treatment. After all the chemo of the last years, having it for 11 months continuous in 2013 I don't want to waste what time I may have left on feeling ill on chemo but likewise I want to grab any chance of prolonging my life. The oncologist said it was my decision but I would have followed their lead but they remained neutral when pushed what did they think would be the best choice for me.

I am confused and have two weeks until the next appointment to decide. I feel very sorry for my lovely husband who himself is not well, has heart trouble rheumatoid arthritis and has had a stroke. I just want to do the best for both of us and as I do the bulk of the caring don't want to leave him so to speak. So ladies, anybody had this experience or tried either of these treatments. I really would appreciate advice/support/ input.

Many thanks to you all.

Carol

[Seren1942]

Dear Carol, what a lovely brave lady you are. These decisions are very difficult and only you know what you really want to do. Give yourself a little time and things may become clear. I hope you find some peace and that you have a happy time with your husband whatever you choose to do. Gillx

[thesilent1]

Hi Carol, welcome to our forum. Wow, 8 years on from Stage 4 is brilliant and will give so many people hope. I am stage 3b and only got 8 months remission from 1st line carbo/Taxol, currently on watch and wait as tumours small. I have not had any of those treatments so am unable to give you any help in that regard but I'm sure some ladies on here will have had these treatments. Can your GP help you make the decision?

Good luck. Ann xo

[Whippit]

Dear Carol, What a challenging time for you. I so much admire the way you're thinking this through and it's a topic that's been on my mind too recently so I feel as though I'm on the same page but I haven't got to the stage where I have to make such a critical decision in a short space of time. I'm currently just thinking it through in theory in advance of that moment.

I wonder if there's someone you can talk it through with. I don't know of a service but it was a suggestion I made to Macmillan when I met them as I felt there was a need for this sort of service. Someone knowledgeable and experienced in difficult conversations who could guide you through. I suppose this service could be provided by the CNS, or it might be available at a Maggies or in your local hospice. The other people I'd trust wholeheartedly would be the nurse-led line on Ovacome - 0845 371 0554 though if it were me I'd want a face-to-face discussion.

As for the choice, I've never heard of Cholrambucil but I have a number of friends on Caelyx. Most seem to have been quite OK with it except they had sore mouths and blisters which they treated with some moisturising product provided by the hospital. I suppose you could make a choice and start whichever one you feel is best for you and if it's just too awful I guess you could make the decision to stop it.

I agree with you 100% that it's important to look at quality of life and whether you can still do the things you want to do. Such a tough problem with your husband who's got complex health needs. On this matter though I do feel you should do what is best for you and place yourself at the centre of your decision-making process.

Keep posting. It would be nice to think we could be of some support. xxx Annie

[Tricia12]

Dear Carol,

I'm so glad Annie has replied to your question. She has more than a degree in common sense and is always full of information and good ideas. I think that the idea of chatting to your GP if you get on well with him/her is a good one. Macmillan could also be a good sounding board.

I pray for some remission after this, my third line of chemo, having had carboplatin with paclitaxel followed almost immediately by caelyx and now with no remission I'm on weekly paclitaxel for 18 weeks - 5 weeks to go and fingers crossed for a good result.

Good luck go with you whatever you decide.

Love - Pat

[nannacarol]

Thank you ladies for your replies. I have taken on board what you have said and have made an appointment with my GP and also make contact with Macmillan. The nurse is coming out to see me on Monday. I have booked a couple of days away as well. Thank you for your support.

Carol X

[Veronique]

Hello Carol, I'm currently on Caelyx with Carbo, 4th line. I had such dreadful side effects from Taxol I stopped after just one dose. A nursing friend recommended Vit E and B6 to combat side effects of Caelyx and I checked with hospital pharmacist. After 4 monthly doses, I have not had one mouth ulcer or painful hands or feet so I reckon these supplements are working. Good luck with your decision.

V