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PeterC
Multiple Myeloma Discussion • March 9, 2023
Marrow Collection During Knee Replacement?
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Hi, I am a high risk MGUS/BGUS patient who undergoing a partial total knee replacement in 2 weeks. Is there any standard protocol for salvaging the marrow &/or aspirate from the reaming of the femur or tibia for onncological analysis? Thanks, Peter
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rehabceo1
Multiple Myeloma Discussion • March 8, 2023
Managing Specialty Pharmacy Delays?
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Specialty pharmacy delays delivering drugs: I have not had a RX refill delivered on time since last September 2022. I take Revlimid (lenalidomide) and Ninlaro. Both must be ordered through a specialty pharmacy and shipped to me. I've used 3 different specialty pharmacies. The first, Kroger, was the best, but fell out of network for Revlimid. Accredo was recommended and was by far the worst. One delay was 4 weeks with every excuse used to explain the delay. Every order was delayed significantly from October 2022, through January 2023. I worked with my physician's office to change to CVS. So far, with two refills, both have been delayed a day or two due to CVS issues processing the refill. My current refill is delayed due to CVS requiring payment of the co-pay in advance to ship. That is fine. My credit card has been on file with CVS for payment of the co-pay ($1474.39)! Does anyone have a good experience with their specialty pharmacy? Do you receive medications, especially Revlimid, on time?
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AvaniPatelDC
Multiple Myeloma Discussion • March 6, 2023
Finding Joy and Motivation in Daily Movement
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I hope everyone is finding a way to move their body each day this month for the challenge. If you don't get 20 mins per day, then just aim for whatever your body can do on a given day! It's okay if you're not at 20 mins every day yet. I was barely there a year ago. I was happy if I could get out of bed, walk to the living room, and park myself on the couch for the day watching tv instead of laying in bed all day! Or sitting the front or back yard in the sun for 10-45 mins to get fresh air, sunshine and not be stuck inside while recovering. I have been doing a lot for this challenge (and with work) since the 1st of the month and feel tired now. Yesterday was my "rest" day from doing extra exercise. I spent about 1-2 hours cooking and cleaning, and about an hour standing around while with a personal training client. That was enough for me since I was tired, and my back was sore because I pulled something almost a week ago - it's healing up slowly but surely. I had to lie down and stretch, which was not easy to do, yesterday after standing just over an hour in the kitchen making food for the week. Today, I played a couple of games of softball which felt difficult today. My body felt slow and weak, back still sore, but it got me out and exercising. I love to play and am so happy I am able to do that again. It gets me moving and allows me to be around my friends again after everything I have been through. It's the thing that brings me so much joy, and aside from the usual "living for my family" cliches, it was the one thing that if I was not going to be able to do it again, or be active in any way, I would not have wanted to keep living. So I guess for me, personally, being able to play softball again was my reason for living. And here I am, playing softball 4 days per week! And starting flag football for a second season! I am going to enjoy being able to move my body this much while I can now that I have experienced how easily I could lose it! Some days are harder than others, but I won't stop yet. I'm just getting started!