Taxol Failing and Further Spread
I started an 18 week course of taxol on 16th August last year so was supposed to have had the last one on Christmas Day but due to hospital admissions,eurodisney,christmas and new year, I had the 18th today It seemed to be working as my liver function was normal after my blockage in july and i could eat normal food as my tumour squashing my oesophagus had shrunk as I had been on 1st stage baby food from april to sept last year. However, since christmas my swallowing had become more difficult but had improved through the 3 weeks in january when I had the chemo. However, only missing 1 week last week I'm now back to regurgitating bread etc. I was hoping that by having more taxol which I'd been promised previously would reshrink the tumour. However, the Reg I saw today feels I am too tired and that taxol is failing as my skin met has reappeared and my breast lump has returned. I also pointed out that I felt I had some swelling on both sides above my collar bone and my hickman line was hurting where it disappears over that area. She had a feel of my neck and says I now have further spread in my lymph system in my neck so wants me to stop the taxol and have a CT scan asap - means 2 - 3 weeks and come back to clinic after the cT. She said I looked too tired to continue but my blood tests were absolutely fine and hadn't changed. I'm not anaemic and my wbc is respectable. I want to continue until I have my CT scan as I know how aggressive my cancer is and if I stop taxol now my CT scan will show huge growth whereas if I stay on taxol it will be a mixed bag hopefully and I will be able to swallow. She was going on about my quality of life not being good if I am tired and to me, my quality of life is more about being able to eat normally with my family even if I sleep more in the day. The children would prefer I could eat normally and have an afternoon sleep than regurgitate and eat pureed food and be active.It occurred to me when I got home that I hadn't put any make up on this morning when I usually do wear it to chemo so I'm better at doing my makeup than I thought I was - thank you Beneficial all in one foundation! (Am running out so thought i'd buy a cheap version as now on benefits but think I will buy the same again if it is that effective!!!)Am scared that it has spread whilst on chemo but actually think it grew during those 4 weeks off over christmas as last time it only took 3 weeks for the liver one to appear and make me go yellow so it probably did grow during that time. Also, if stop taxol now I'll be back to pureed food in 2-3 weeks and I just can't face that.Am I being unrealistic to push to stay on taxol for 3 more weeks to see what CT scan is like and to see if it does improve my swallowing and shrink my lumps and skin ones.I really have reached the end now of chemo options unless they are willing to let me have vineralbine again which they were in November after I recovered so well after nearly dying. Next week, I will go with someone who can fight my corner and I will see the consultant rather than the Reg.Came home very upset and tearful but at least this time I had managed to talk to one of the chemo nurses about what had happened today and she was really good and did spend quite a lot of time with me.I am not ready to die - I still have a lot of energy and my breathing is OK but knowing how aggressive my cancer is if i don't have chemo I will be dead within 8 - 12 weeks and having pushed the boundaries this far, I want to push them further and live a little longer and I am so scared of not being able to swallow as it was so awful last time. I know I can't go on much longer - my heart is bad, I need diuretics and my lung function is poor but I have a reasonable but limited life and i just want a last chance. I live too far away to go on trials at the marsden as it would defeat the object of staying alive if I'm not here half the time.You're advice pleae - should I just accept I've reached the end or do I push to stay on taxol for 3 more weeks and switch to vineralbine.
I do mean to go back to telling you about eurodisney asap but other things are more important at the moment.