Permanent CIPN

I was diagnosed with myeloma in late 2018 and began first line chemotherapy in January 2019. I was warned that CIPN was a potential side effect of the use of Velcade and I was asked about any PN effects on the basis of a questionnaire. I suspect I underplayed the CIPN, acting the brave soldier. During the third cycle I began to have quite perceptible CIPN, but a check with the registrar suggested it was Ok to continue.

During the fourth cycle, by which time I was in full remission, I began to show signs of postural hypotension, culminating in my collapsing after getting out of a taxi outside the hospital I was attending for an outpatient clinic. At that point all chemotherapy was stopped.

Subsequent tests showed grade III neuropathy, from which I have never fully recovered. While the hypotension is no longer there, Istill have residual pain and loss of sensation in my feet and ankles, as well as minor issues in my fingers. It is typically worse when my feet are cold. Nowadays, my chemotherapy (second line) avoids both Velcade and Lenalidomide.

I have never had any experience of Hilotherm. However anecdotally, when undergoing the heavy chemotherapy preparatory to an autologous stem cell transplant, I sucked ice pops to reduce possible mouth ulcers. This was entirely successful, suggesting tome that cooling therapy for CIPN would be a plausible option.