I really need your help & experience as I’m feeling pretty low at the moment…
Was diagnosed with bone mets over 18 months ago & have tried various treatments to keep them at bay (Femara, Capecitabine & Taxol), but they keep on winning & getting worse. I have just had 12 Taxols which showed a great response after a scan in November, but have just been for results of my latest scan & the bone mets are active again, plus the small amount of fluid in my left pleura has increased in size & now needs to be drained.
My onc would like me to start either Vinorelbine or Gemcitabine, once the fluid has been drained, and I would like to know if any of you have experience of these chemos? Have they been successful & what SEs have you had? Also has anyone had fluid drained from lungs?
I am struggling to deal with everything right now & would welcome any input from anyone.
Sorry to hear that you have had some progression. I don’t have personal experience of either of the chemos you mentioned but hopefully someone who has will be along soon.
I’m assuming they can drain the fluid as a day case? Is it affecting your breathing or are you OK?
I know progression just knocks you for six doesn’t it? I had progression to my liver after FEC and as well as feeling low I felt pretty hacked off that I had been through 10 weeks of feeling rotten for what seemed like nothing.
Hoping the next chemo gets you back to being stable.
Yes I can have the fluid drained as a day case, with a local anaesthetic. It has been affecting my breathing & getting breathless going up stairs etc, so to have it confirmed today wasn’t really a surprise. Just wish it wasn’t the case as I feel like I’m swimming against the tide at the moment
Hi Dugsy,
So sorry to hear what a rotten time you’re having. Haven’t got any experience of either of those chemos but know someone who has had one cycle of Gem and she says it’s easier than Taxol which knocked her for 6. Another friend I believe is on Vinorelbin she is on 2nd or 3rd cycle and so far hasn’t been too bad but has had tummy problems.
Hope someone with first hand experience will come along and give you some reassurance and some tips. It is a real blow and you are bound to feel low, I hope they get the fluid sorted and you are more comfy, that will help a little.
hi dugsy,
i am so sorry to hear this news. I have spoke to you before, when my sister was having taxol at the same time as you and had a few issues.my sister also was diagnosed with bone mets and a small amount of fluid in her pleural cavity. She is also hormone positive. Unfortunately she has just finished 18 taxols and has also been told she has got progression to more bones and liver! Devastated, as i am sure you are. She has just started on xeloda and we have to move on with hope that the treatment will work. There are various chemos out there and some work well and some don’t. Your next chemo will blast your mets dugsy.
as for the pleural fluid, i have read lots of people have them drained, and don’t fill up again. sending you lots of best wishes, claire x
Thanks for your replies & Laurie for the link which I read through last night.
Claire, sorry to hear your sister has had progression as well. It’s so hard to take straight after going through a long period of chemo. It makes you think was it all worth it? I hope the Xeloda works well for her & she too gets a break from chemo soon. You are right when you say we have to believe that the next drug will work, but at times it seems hard to believe.
I am waiting to hear from the chest team at the hospital as to when I can go in & have the fluid drained. Should be in the next week. Then I meet my onc again on Feb 14th to decide which of those two chemos to start & when. So a couple of weeks yet to build my strength back up.
Hello Dugsy
I have been looking out for you on the other thread wondering how you got on. I am so sorry things aren’t going so well but it’s good that you do have more options. I had gemcitabine ( with other stuff ) for a different cancer 7 years ago and the one big bonus was that I didn’t lose my hair. It would be helpful if those who know could actually recommend which one.
Thinking of you and wishing you well - your posts on the other thread were a great help to me.
Sarcath
Sorry to here that thing aren’t to good - but good to know that there are other options.
I had a chest drain a couple of years ago and a lungs biopsy. Unfortunately it didn’t work for me as I have a straight drain not a plurodesis with the talc which is quite successfull plus there is a medical procedure.
I has fec/tax which worked immediately for nearly tewo years. I have some reacculation but I’m on Cap which has started to reduce the fluid/lumps/bumps.
I hope your appointment with your oncologist is postive and they have set up a treatment plan for you.
Wishing you well and I’ll look out for your post to see how your getting on.
Take care and 'll be thinking of you.
Love
Chris xxxx
Hi Dugsy, i’ve just noticed your post here and wanted to let you know i’m absolutely gutted for you. You were a great help to me on the other post and i had prayed for good results for you. I know you’ll be down at the minute but i hope you manage to find your fighting spirit again and that you new treatment goes well for you. Take care of yourself and i’ll be looking out for your posts to see how you are doing.
Hello all,
Thanks for replies & kind words.
Sarcath & Pumpkin - sorry I haven’t posted on other thread & thank you for taking the time to ‘find me’. I am still struggling with this news & am feeling pretty low right now. Have got my appointment through for the chest drain, Tuesday 14th - what a lovely Valentines Day I’m going to have, lol!!! Supposed to be seeing my onc that afternoon too, to discuss starting the chemo, but not sure how long I’ll be at chest clinic for. I have no idea if another lot of chemo will do anything, but guess I have to believe it will do something, otherwise I may as well give up. I told my onc last week not to give up on me yet, as the children still need me, and she was quite adamant that she would do no such thing, so while she’s still fighting I will too.
Sorry for the pessimistic thoughts but can’t seem to think any other way right now - hopefully once treatment starts I’ll feel a bit differently.
Big hugs,
Dugsy xxx
It’s tough being in that dark place - big hugs. You know we’ll be here to help you out of the hole.
So good to hear you have a onc that will fight your corner with you and as for Valentine’s day - Meh - overrated! Insist on serious sedation and you can float through your appointment and back home!
Hi Dugsy
Just to say I am thinking of you and wishing you well plus the will to keep fighting. Hope your next appointment brings some clarity and a decision you are happy with. I often think how I admire you for all you have kept doing with your kids - the riding, cycling, London - true fighting spirit.
Love and hugs
Sarcath
Hi Dugsy and all you other ladies fighting out there. I know exactly how you are feeling as i have been on different chemos for over a year now. I have liver, bone and lung secondaries which are all advancing. This time last year i started capecitabine which didnt work then i was given abraxane which was hellish and unfortunately didnt work either. I was then given vinorelabine which was fairly easily tolerated but didnt do any good. I’m now on CMF about to complete 2nd cycle and have a scan at begining of March so fingers crossed it might have done some good. At my last oncology appt, like you, i sort of felt that they were thinking enough is enough as she said she didnt know if the cancer would just progress at the same rate whether i had chemo or not and that knocked me for six. When i asked what my prognosis was if i stopped she said i would probably have a good few months and then probably my liver mets would cause problems, so really that made up my mind to carry on as i’m only 52 and dont want to die yet but sometimes its hard to stay positive. I wish you all the best with your chemo,we all react to drugs differently and at least if you keep trying you will hopefully will find one that suits you and kills the nasty little buggers floating around.
