[veggieperrin]

Hi all,
I was a 49 year old keen runner, cyclist and in 2018 i started feeling burning in my legs (like lactic acid) and breathlessness on exertion. I went to the Dr’s twice about this and was told it was probably a virus.
By the Nov 2018 It was bad, I had to take two Immodiums just to get through a yoga class and I was starting to get Panda eyes. I saw a different Dr and she immediately did blood tests which showed protein in the blood. Had bone marrow biopsy which confirmed Amyloidosis. Jan 2019 started VTD which worked well and I went to the NAC who confirmed stage 3a Mayo Cardiac AL Amyloidosis.
After 6 months remission I had to start Daratumanab which has brought the light chains down to normal and I am now in the the 38th monthly cycle.
I still have breathlessness and tightening of the chest on exertion and I’m waiting on further Cardiac tests (12 months now)
Dave

[veggieperrin]

Hi Rachel,
I’m glad your eyesight has improved. I’ve seen the optician and she informs me in the last three months since I last saw her a cataract has formed in my right eye. We both think this is linked to the treatment because of the speed of the change. She is referring me to a specialist at the hospital.
take care
Dave

[veggieperrin]

Thanks both for that, I thought my eyes might improve after stopping the weekly velcade/Dex ( I am on monthly maintenance Daratumanab now) but it hasn’t. Be interesting to see what the optician says next week.
Will keep you posted. Take care

[veggieperrin]

Good luck with the treatment Dee, just had my 4th Velcade and the side effects havn’t been two bad except I’ve developed leaking odema in my lower legs which is a real pain.
They think I need to get more protein but I’m seeing Renal tomorrow so hopefully will get it sorted.
best wishes
Dave

[Author]

Posts