Hi - and hello from France where I'm now starting my third week of treatment. I'm grateful to find this group where I can look through and see other peoples worries and challenges, and the support they get in the responses.
I don't know if it's the same as in the UK but so far I have found the system here pretty faultless - from diagnosis to treatment has been very quick and effective. Considering it started with what I thought was a trapped nerve in my shoulder it's been a bit of a shock, I've got 2 monthly cycles with daratumunab and velcade by injection, and thalidomide and dexamethasane by tablet. I'm then scheduled for a 2 week stay in the cancer unit at Toulouse for a stem cell transplant ( not sure I'm looking forward to that! ). It's not been too bad so far, mainly a bit of fatigue, but I did have a huge allergic reaction (totally covered in an itchy rash) to the amoxycilline that I was taking so had to come off that. There's a team of 6 at my local hospital and I've been given social helpers, in case of financial worries, a psychologist in case of mental health worries, and a dietician in case of stomach problems, so I feel fairly well covered. To make life easier with less travelling they have arranged a nurse to come out twice a week to take blood tests, and a doctor once a week for the velcade injection -- that means just one trip per week to the hospital. If nothing else it's certainly expanding my French medical vocabulary !
Looking forward to many hours in the future looking at posts and hopefully contributing.
Hi Neilinfrance and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our various blood cancer groups.
I don’t have Myeloma but was diagnosed in 1999 with a rare, incurable but treatable type of NHL Stage 4a and although my blood cancer ‘type’ is different I know this journey rather well.
I also know the Stem Cell Transplant (SCT) journey rather well as I have had two Allo (Donor) SCTs (June 2013 then Oct 2015). Yes it can be a bumpy road but it is all do-able.
We do actually have a dedicated Stem cell transplant group where people from different blood cancer support each other on the SCT journey.
Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.
Always around to help more or just to chat.
