Trial drug

Hi Jacquie. It's Sue here. Frist of all I'm so sorry to hear you have relapsed with you MM , what a shock for you .I hope you can get started on what ever treatment you choose very quickly and that you will see the benefits of it very soon as well . I've heard of the trail drug you talk about but have only read about it on Myelona UK site and the face to face monthly group I attend . Have you got someone to talk things over with until you can speak with your family. I really hope so x this is a brilliant site to go to and speak about how you are feeling and to get things out in the open .

I have MM diagnosed Aug 22. Have had all first line of treatment finishing with a SCT 2 years ago next week .

Get tested every 3 months and have a knot in my stomach every time waiting for results.  I've used the Macmillan chat line several times when I need to speak to someone  . It has helped me . Please do keep in touch and wish you all the very best xx 

Hi Sue Thank you for your message. I do go to the Maggie’s Centre which does help, it is telling my children I struggle with but I will get Mother’s Day over & speak with them. I think as I was doing well I felt good (other than niggles I get ) it was a shock.  My Dr & Team are very positive that the trial drug will suit me, I did struggle with the maintenance drug Lenedonide so hopefully not with this one. I do have a great sisters who I can chat with I am thamkful for that. I wish you well & all the best on your journey sue hopefully chat more I will keep an update of the trial drug.

Best wishes

jacquie

Hi Jacquie, telling our children is the hardest thing, my 3 are adults now and my daughter lives in Australia with her family.  When I got my diagnosis we told them all on the same day , video to Aus . There was alot of tears love and support . I know it's hard to seem to be upbeat and positive when inside you are anything but ..

I too struggled with Lenalithamide and had to give it up so have no maintenance drug at tge moment . Take the positive vibes from your Docs and team and go with it .Thank you also for your good wishes xx