Was diagnosed in May this year with terminal metastatic melanoma in my liver and stomach lining, I was accepted for a trial drug called vemurafenib in Glasgow, after my first scan the cancer had reduced now just coming up to my next 2 month scan is anyone else going through the same as me. I am so scared of the results, don't feel I want to ask what is the time scale of my life on this drug. Is anyone else in a similar situation. Any help or advise would be greatly appreciated.
Welcome to the Online Community. I'm so sorry to hear of your diagnosis. It's good that the trial drug reduced the cancer, but it's understandable that waiting for your latest scan results is a scary time.
I'm sorry to see that you haven't had any replies so far. Perhaps there isn't anyone in this particular group with the same diagnosis as you. However, there are definitely others who understand what it's like to have a terminal diagnosis, so I hope that you get some replies soon.
In the meantime, you may also find it helpful to join some relevant cancer type groups and post in those as well. For example, we have a melanoma group and a secondary liver cancer group.
You can also give our team a call on the free Macmillan Support Line (0808 808 0000, Mon-Fri, 9am-8pm) - our experts can answer questions on medical, practical and financial issues, or just be there to listen if you need to talk.
I hope this is helpful.
Love Annette x
Hi, I was glad to hear from someone who has the same as myself (that's sounds awful) but it helps to know I am not alone. I went for my scan on Friday so just have to wait now for the results, due at the Beatson on Wednesday. This is my second scan been on vermurafenib for 4 cycles now (16 weeks) there was a 25% reduction the last time so now hoping for a small reduction each time I go seemingly that is best. I like you worry about my family I have 2 daughters age 30 and 26 one married one single and I keep playing over and over in my mind the things I will miss (nothing like beating yourself up about it) I like you have always been a positive person but this has just floored me. Its good you are positive and you have prob been told that these drugs have been such a breakthrough for melanoma we just have to hope they work for a long time with us. Have you had any side effects, I have had the usual aches and pains that were really bad to start with but seem to have eased off, hair def thinning its upsetting in the morning when you look at the pillow my nurse says some people don't loose all their hair it just thins fingers crossed, its these things that you just take for granted when you are healthy .Please keep in touch x
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2020
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: 668265007