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image“Success is the sum of small efforts, repeated day in and day out.” – Robert Collier

Well, it’s Easter Sunday and we are at the infusion center getting the second darzalex infusion, and honestly, I couldn’t be happier about it. Two down before he leaves for his business trip tomorrow morning and a short visit with his Mom and Dad before he comes home.

Update on how it all went on Monday: The nurses did a stellar job. I got them to type his blood to get it in their system before they started. There was confusion about my request and I was showing them the paperwork from the website on how the therapy interferes with cross matching. Our Doctor popped in to check on Dave and said, “She’s right, type his blood.”  I said to Dave, “So, don’t get in an accident, need a blood transfusion, and be unconscious unless I’m around.” With that very stark realization, and the urging of a doctor friend and another medical savvy friend, I’ve ordered a Medical Alert ID bracelet for Dave and a card.  I also called the pharma but they couldn’t help me. The gal was great. She totally duplicated what I was after and why.  She has bumped it up the line, but after waiting 4 days I just went ahead and got it done.

So there’s a wonderful new Facebook group for patients on this therapy or even just interested. The feedback there has been very helpful since it’s such a new therapy. As usual with all things in Myelomaville, there is a wide variety of prescribing by the doctors.

https://www.facebook.com/groups/892477187532788/

By itself, which was approved in November, it’s about a 30% response. In combination (currently in trial), it’s early data is showing 80% response. We are off label in combination. Pomalyst/Darzalez and a small limited amount of the dreaded dex.  Right now he does 4mg/day post infusion for two days. Once he gets to every other week infusion it will be 12 mg of dex on the off week over two days (8mg/4mg). The dex dosing is not typical or standard. Dave has trouble with it so they try to keep it low and tolerable.

So he did really well on the infusion and two days after. Then he felt really washed out and had some mild back pain. Suspect a dex crash and then back pain is a side effect of the therapy. Probably antibodies building up in the marrow.  All manageable.

I hope you all have a lovely Easter weekend with your families.

How do you say daratumumab? Dara-tomb-muh-mab

(Dara like Sarah, tomb like Egyptian, muh like mud, mab like stab)

 

 

 

 

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