Hi all
I was diagnosed with myeloma in December 2012.
Had stem cell transplant but only lasted 12 months
I've been on Revlimid now for 8 years with great success but starting to worry now about when it will stop working!
It's really starting to affect my mental health - I have blood tests and consultation eventually 4 weeks and on the week leading up to my phone call I have panic attacks expecting them to say my meds have stopped working
I'm sure there's a lot of you out there feeling the same but I believe any support group really helps when you know you're not alone!
Anyway I'm sure there's lots more meds out there to keep us all going!
Onwards and upwards!
Hi AnnV and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about the journey you are on.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a rare (Incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of this journey well. My first Allo Stem Cell Transplant lasted 6 months but as I had no other option available it was decided that I would have a second Allo SCT, that was over 7 years ago and I still remain in remission.
Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.
For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a few folks with Myeloma in it so worth checking.
Always around to help more or just to chat.
