After stemcell transplant

Hi Little G and a warm welcome to this corner of the Community 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 NHL (Stage 4a) so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well. More so as I have had 2 Allo (donor) Stem Cell Transplants (SCT) (June 2014 then Oct 2015) so I do know this rollercoaster rather well.

There are a few folks in this group who have had SCT so let’s see if they are still looking in. There are also folks with Myeloma who post in our dedicated Stem cell transplant support group so you may want also join this group and introduce yourself.

Each different type of blood cancer has a different post SCT process so some folks do have follow-up/maintenance treatments but many, like myself don’t.

The main challenges post SCT is infections and what I call the post SCT ‘leftovers’……. The SCT process can develop ‘other’ Heath challenges…… for me it’s a heart condition…. but I am not complaining as the bottom line is SCT saved my life (See my story)

You may find this rambling discussion thread in the SCT group helpful Life after a SCT - A Survivor's Guide

Always around to help more or just to chat on here or in the SCT Group.

Hi,I'm 79 days post SCT. On week 7 I started 2 more cycles of DVDT and zometa (monthly).It was a shock as I thought I was done with chemo but as explained to me it gives a deeper response to the transplant. Again this is patient specific so might be worth asking your consultant when this finishes I'll be on lenelomide for maintenance and maybe small dose dex.

Best wishes 

John 

Thanks John that helps,.as you I thought the rough stuff would be done with. I know treatment is patient pacific but it seems I'm going down a very similar route to yourself. I just wish my medical team would of given me a clearer understanding of each stage of the process 

Yes its frustrating when they just drop it on you.Maybe they dont want to worry us in advance but I'd rather know everything in advance.Find I can get my head around it better.

How far post SCT are you and how are you with the fatigue? 

I was told of for going on a push bike ride last Monday ,just trying to build my cardio levels up for going back to work in January. Mind you I found my limit at  about 3 miles and still got sore legs from it. Just find it hard sitting around when I feel ok. 

John

Hi John, I'm only 6 weeks post SCT,I don't feel too bad, I find the fatigue just hits me like a hammer which is infuriating but after a short nap I'm good too go again. Really struggling too bring my fitness up, still having problems with my hip so just taking short walks at the moment, hopefully it will improve. Same here hate sitting around doing nothing. I was very mobile before all this. 

Gary 

Hi Gary,is the hip problem because of myeloma? I had a lot of rib pain prior to treatment which cleared up   but 2 weeks ago Started again . My para proteins are below 1 which is a relief. My consultant said I've a weakened skeleton and if I overdo things I can get rib pain.Have you been told this?

John