[provenceParticipant]

Diagnosed December 2014. had a very high reading of paraprotein at a level of 81. This responded well to chemo in tablet form and Velcade on a drip. With paraprotein down to 11, I undertook a stem cell transfer with high level chemo. Finally reached a paraprotein level of 3.3  Regular blood tests showed a rise in the level of protein in April this year and I am waiting to see if this month’s bloods show a further rise. After such a good response to initial treatment , I was not expecting to see any change quite so soon. Has anyone else lived on a low level  and for how long before further treatment.? Would appreciate any shared experience as I am living alone and no chance to talk things through. Not sure whether to expect a gradual rise or experience a plateau.

[mickackParticipant]

Hi and welcome to the site 🙂

I was diagnosed Oct 2013 had 6 month tablet chemo them 1st stem cell April 2014..I then had2 years good remission until around summer time 2016(pp rose very quivkly in my case so then i was put on the velcade for 6 month followed by 2nd stem cell transplant over the Christmas and new year 2016/17..I am now in remission again so will enjoy it as long as i am aloud 🙂

We are all individuals so all have different myeloma paths…I do wish you well and keep try to keep as positive as you possibly can..maybe find out if there is a local myeloma group near you who you can contact and talk to…

All the best ..mick

[provenceParticipant]

Thank you so much for your reply. I have stem cells frozen in readiness so will probably be following your course. What level were your paraproteins at when you restarted treatment ? I wish you well in your present stage of remission and hope you enjoy the summer. It certainly won’t affect my enjoyment of things. Am equally as concerned about the leak in my pond right now!     Pauline

[mickackParticipant]

Hi Pauline

My pp was around the 40 mark if i remember rightly when it came back last summer but I knew it had come back with the symptoms I got again …out of breath tired etc etc …and yes if there’s anything I can tell others is to enjoy the remission time.51 in Sept so can’t hang about so I am enjoying my simple life I have now tailored for myself ☺ walking my dog and enjoying peace and quiet is top of my list everyday …oh and the tennis..not just Wimbledon follow it all year around..been to Australia USA  middle east far east Monte Carlo Rome Paris and now London… .all in glorious HD haha

Oh yes get your pond sorted that’s a priority ☺

Mick

 

[Author]

Posts