Hi everyone im Linz I’m new here . I had a sct on 27/03/2023. Taking me ages to get over it . What im worrying about is for the past 3 weeks I’ve had really bad oedema in my feet and legs . It’s awful . My gp has prescribed furosemide tabs but no better . I’ve also got awful burning pains in my hands / fingers . Especially worse in the morning and bed time . Had blood tests a few days ago no results yet . Feel like I wish I hadn’t had the stc as I definitely feel worse than I did before .
Hi Linz Horselover and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about the journey your diagnosis and journey.
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 very rare (also 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……. especially as I have had 2 Allo (donor) Stem Cell Transplants (SCT)
The post SCT recovery can take some time, you are only 6ish weeks out from a very demanding process so your body is still going through you immune system rebirth so ‘stuff’ is going to happen.
At 6 weeks post my second Allo SCT I was bed bound and could only be moved in a wheelchair with oedema being just one of the many bumps in the road……. but it does get better and life does return……. For me, back in late 2013 I was told my only hope of life was SCT and if it did not work I had a few years in the click….. but I eventually reached remission in Sep 2016…… the first remission in over 17 years to last more than 9 months and I remain in remission to this day and am living a great life…. actually I am living the dream (see my story in the link below)
I see you have also joined our dedicated Stem cell transplant support group where you can talk with others from all the other blood cancers, not just Myeloma who have navigated the SCT rollercoaster. You may also find this link to a rambling post where folks have talked about their post SCT experiences Life after a SCT - A Survivor's Guide
Always around to chat on here or best put up a post in the SCT group and see who else is still looking in who have ridden the SCT rollercoaster.
((hugs))
