Priority 8 from the Myeloma (Canada) PSP

UNCERTAINTY: How can we reduce or manage the short-term effects (e.g., diarrhea, nausea, fatigue, emotional challenges, skin reactions) and long-term effects (e.g., vision loss, loss of muscle strength) of myeloma treatment? (JLA PSP Priority 8)
Overall ranking	8
JLA question ID	0113/8
Explanatory note	Myeloma treatments are associated with a host of adverse short- and long-term side effects (including diarrhea, nausea, fatigue, anxiety, rash, vision loss, loss of muscle strength, kidney damage, etc). Participants report that these side-effects lead to reduced quality of life and would like ways to reduce or manage these effects such as replacing current treatments (such as dexamethasone) with newer alternatives, the development of new prescription drugs to treat specific side effects, or recommendations for over the counter drugs that would help in the management of these effects.
Evidence	No evidence identified
Health Research Classification System category	Cancer and neoplasms

Extra information provided by this PSP
Original uncertainty examples	Can we do research into long term side affects on vision deterioration and muscle strength reduction as side effects? ~ What are the impacts of long-term lenalidomide usage in myeloma patients whom have received a stem cell transplant, and are on maintenance therapy? ~ How can diseases and treatment side effects be treated or minimized? This includes fatigue, skin rash and peripheral neuropathy. ~ Vitamin B supplementation to help mitigate PN during treatment from Velcade. ~ Why is there no recommendation of OTC treatments for side effects? ~ Side effects....GI problems seems to be a huge consequence for many patients. What possible additives to existing treatments might be used to relief these nagging symptoms?
Submitted by	Please see the PSP Engagement Summary on the JLA website

Extra information provided by this PSP

Original uncertainty examples

Can we do research into long term side affects on vision deterioration and muscle strength reduction as side effects? ~ What are the impacts of long-term lenalidomide usage in myeloma patients whom have received a stem cell transplant, and are on maintenance therapy? ~ How can diseases and treatment side effects be treated or minimized? This includes fatigue, skin rash and peripheral neuropathy. ~ Vitamin B supplementation to help mitigate PN during treatment from Velcade. ~ Why is there no recommendation of OTC treatments for side effects? ~ Side effects....GI problems seems to be a huge consequence for many patients. What possible additives to existing treatments might be used to relief these nagging symptoms?

Submitted by

Please see the PSP Engagement Summary on the JLA website

PSP information
PSP unique ID	0113
PSP name	Myeloma (Canada)
Total number of uncertainties identified by this PSP.	59 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	28 April 2021