One man's experience with multiple myeloma

May 8, 2019

Since August of 2017, Warren has put me on Daratumumab (Darzalex) and Pomalidomide (Pomalyst).

Daratumumab is a monoclonal antibody (Wikipedia – technical with useful bits) that is given by infusion and starts out in weekly dosing. After 8 weeks, dosing goes to biweekly, and after 6 months to monthly which is considered a maintenance dose. I have successfully moved to the maintenance dose.

Pomalidomide is an immunomodulatory drug that is a relative of thalidomide (the oldest member of the family) and lenolidomide (“son of thalidomide”) and may be considered to be the “son of lenolidomide”. This drug is dosed 1 capsule per day for 21 days followed by 7 days off which adds up to 1 cycle. Four strengths are available, 4mg, 3mg, 2mg, and 1mg. I started at the 4mg level and quickly moved to 3mg due to allergic reactions (severe itching) and then a couple months later to 2mg and later to the 1mg dose because of severe fatigue. Later on I moved to the 1mg dose also due to fatigue. Finally, Warren put me on 1mg every other day and now, I am trying things without the drug at all. So far, my energy levels are improving, but it takes a month to totally clear the drug from the body.

Still taking the dexamethasone (Decagon) when I get my monthly daratumumab infusion.

With glory and praise to God, Father, Son, and Holy Spirit, for all the healing and care I receive.

August 30, 2017

(I just noticed that this posting was never published and much has happened since then. I’ll update.)

Again, it has been way too long since I last posted and there has been much water under the bridge.

Returning to the original dose of the Kyprolis helped with the side effects for a while. However about 4 months ago, my numbers started to climb and Warren thought it wise to add another drug to my regimen – Cytoxan or cyclophosphamide – 500 mg once a week on the first day of Kyprolis dosing.