Capecitabine

Plastic

I was originally on this site 2017, I have Metaplastic Triple Negative Breast Cancer,. A very unusual cancer,  no one else was the same  so i just looked in on this site  from time to time to see if there was anyone like mine. Its a very difficult cancer to treat, I had 12 Chemo sessions  during which it had doubled in size . Then a single Mastectomy --- after healing i had 5 weeks of Radiation.  All seemed well for a few months. I was taken to hospital  with suspect appendix , While scanning me they found the cancer had gone to my lungs that was 6 months ago i have just had my first week on Capecitabine , not too bad but very tiring. I wish it had been started earlier, i know its not a cure but hopefully holding---for how long no one knows. I wasted a month hoping to get on a trial .

Like you all just hoping something new comes along.

C J 

Dear Ellie, I am sorry you are feeling so distressed and low, please read what was written to Nicky yesterday on this forum for some ideas and remember many of us have reached this point and are still going several years later. Nobody can predict what is ahead and what new treatments will be available. Of course fear is consuming you, it did me as well and still does on occasion. As mentioned I got help from GP re this. Is there anyway you can protest to your local MP about your drug of choice not being funded by the NHS? Have you tried other hospitals for a second opinion? I think It is not nearly the end of the road yet, it may be that you will be described as living with an incurable illness but that does not mean terminal.  The first thing you need to do is to get help in managing your depression and anxiety, when you can manage this you may feel a bit brighter. Try and get support from others to help you think of other thing, if you continue to let it consume you it wastes time that you could be doing something pleasurable .this is not a criticism as I have felt the way you are feeling and the fear is difficult to control, and I probably will be on here again with similar feelings! Let us and friends support you through this horrible bad patch. It will pass and I am sure you will manage on the oral chemo. We become paralysed by this fear and can only think the worse so please keep communicating with your many friends here and we will support you through it. Tomorrow is another day and it will start getting lighter at nights in a few weeks, I find the dark makes me feel worse! Looking forward to reading many posts from you in the future!

With lots of hugs and love xxx

Hi Ellie,

i know how you are feeling. Theses drugs are hard to take.

it is a shame you had to stop the drug Inas turned down by the NHS for lenvatinib and after 2 times of going back to the company they have funded it for me on compassionate grounds . I wonder if that is an option for you as tye drug.was working for you.

I have had to stop the lenvatinib as my BP went up and will restart it on December 2 nd and will see f the cardiologist can recommend another BP medicine as i am on so many already.

i am scared about taking because so many have to give it up because of the side effects.

the tears I find get better and doing the things you can do helps and walking and swimming and being outside keeping busy all helps.

best wishes 

Ruth xxx