[StephMetal]

44 year old 'Skippy Chick' diagnosed March 2017

by StephMetal on Thu Jul 13, 2017 3:48 am

Hi all,

Greetings from Oz. Been bouncing around here since diagnosis, figured it was time I popped up and said hello.

Found out I had this disease after I rear-ended some guy in the gentlest motor vehicle accident ever. No damage to either car, but my right clavicle shattered where it hit the seat belt. X-ray showed 3 cm (1.2 inch) lesion at site of fracture. Had been dealing with sore/broken ribs for almost a year, but was otherwise mostly asymptomatic.

Imaging showed lesions in my pelvis, sacrum, multiple ribs, both clavicles, and a large soft tissue mass between spine and where my 7th left rib used to be. Bloods, liver, and kidney function tests all came back normal, but a Bence Jones test came back positive after excess protein noted in urine. Eventually diagnosed with lambda light chain multiple myeloma. At diagnosis, Light chains 1327; 70% bone marrow plasma cells. Full body MRI also turned up a large intracranial / skull base lesion.

So far I've had 2 surgeries to stabilise clavicle / humerus lesions, and am almost through 3 cycles of cyclophosphamide, Velcade, and dexamethasone (CVD). Stem cell harvest booked for early August, autologous stem cell transplant to follow. Been feeling OK through most of treatment so far. Starting to get pretty nervous now. Will continue to bounce around here reading about everyone else's experiences and maybe offer an update on my own.

Wish me luck – I reckon I'm due for some!

[Grizlump]

Re: 44 year old 'Skippy Chick' diagnosed March 2017

by Grizlump on Thu Jul 13, 2017 12:54 pm

Hi, Steph

Sorry you are here, but welcome anyway. Don't be too worried. You will find a lot of people afflicted with this disease have come back from the very brink, so to speak, and are now doing fine. I am sure many of them were in much worse condition at diagnosis than you.

Still, this is no picnic, but you are young and seem willing to do what it takes to get better.

I was lucky, if you can call it that, as I had been monitored for some time after a plasmacytoma in a rib had been taken care of. I told my doctor that I never knew I was sick until she told me, and I never really felt bad until she started treating me. Eventually the blood work numbers got bad enough that I had to begin treatment in mid 2014, and I had a much worse time with the side effects than you evidently had. I likened treatment to hitting yourself in the head with a hammer. The upside was it felt so damned good when you stopped.

I was not brave enough to go for the transplant, and being over 70 years old now I just wanted to live as hassle free as I could for a while. My blood work numbers are creeping in the wrong direction now, so it looks like the days of popping an occasional pill for maintenance are coming to an end and I will be back on some heavier medication to keep the little monsters at bay.

Good luck and keep us posted.

Charlie (grouchy German)