2017-02-20

Dumping Velcaid

So Velcaid is a bit much.  The resultant side effects of distal nueropothy are debilitating in my case. The bottom of my feet are numb making balance a real issue.  Weakness in my legs has made it difficult to do much walking around.  My stamina is minimized.

Additionally, the feeling of constant surging tingling throughout my torso is distracting to the point of driving me to constant irritability.  Every breath sends a wave of tingling though the skin from may navel all the way up to my sternum and spanning my entire frontal rib cage.

Having cut off the Velcaid for the last eight weeks made some improvement.  Adding Lyrica as a replacement for the previous nuero-inhibitor may have had some impact, but only in the trunk area, not in the legs.  My legs are showing some improvement I think.  I am hoping that the long term side effects will mostly disappear over the next few months.

So the regimen is now a weekly dose of Dexamethizone and a monthly IV of Darzalex.  It will be interesting to see whether or not the combination is enough to hold back the cancer and see if the kappa light chain count stays low.  The combination of Velcaid, Darzalex and Dexamethazone had reduced the kappa light chain count from ~63 down to 0.70.  A remarkable improvement.  However, the full protocol was cut short by six weeks due to the side effects.  Thus, it is hard to predict the longevity of the protocol.  Had the full protocol been followed, the expected increase in efficacy was 60%, giving me perhaps nine months of low kappa light chain counts.  I would suspect that the efficacy will be reduces somewhat due to the early cut-off of the protocol.  Time will tell.

I figure that if I can make it through the summer without major relapse, I will be doing damn well.  I hope to spend a fair amount of time down at the farm.  I always gain strength, both physically and mentally when I am there.  I miss Daveed of course, but my trips back give me some time with him and he is always happy to see me.

Again, this is here for my own reference, so will not push this out for the general public.  
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