Been lurking around here for best part of a year and have learnt a lot of useful stuff. Diagnosed initially with plasmacytoma in vertebra but at last minute two lesions showed up on PET scan so started 6 cycles of VTD which finished just before Christmas and no traceable disease. Progressed to stem cell transplant in February and have been home about two months.
Feel in limbo much better than I was when I first got home but feel stuck in a rut now! Don't get me wrong no treatment for a while would be amazing but how to move on?
Not sure if I should stay away from forums etc and try to forget myeloma for as long as I am able but keep returning for reassurance I suppose! Anyway how to forget? I'm stuck with this unwelcome companion whatever I do! How do you get on with ordinary life ?
Thanks for listening to my ramblings.
N
Hi and welcome to the Online Community.
I am Mike Thehighlander and I am dropping in past from our dedicated Stem Cell Transplant Forum (SCT) where both SCT patients and carers hang out and support each other on the SCT Rollercoaster.
You may well have been looking in on the SCT Forum so you will have an idea what we do
For some of us the post treatment recovery was a few months, for others a few years. It just depends on how hard his body has been hit and how fit he was going into SCT.
I have had two Allo SCTs with cells from my brother and I totally get the journey you are on. We also have number on the forum from a Myeloma background so you can connect with them.
You may want to follow this link to our Stem Cell Transplant Forum where you will be able to connect with people who understand the journey you and your son is on. You can ask the folks questions about post treatment care, what to expect and how to help him during this time.
Follow the link above and join the group. Hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.
We also have this thread - Life after a SCT - A Survivor's Guide where we have recoded our post SCT stories - have a look as you may get a better understanding of the challenges still to be faced.
You may want to post some information in your profile as this really helps others when answering. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine profile by clicking on my username Thehighlander
Always around to hep out.
