Hope my 'journey' helped you a little--feeling 'alone' w/a diagnosis isn't necessary... I'm curious as to why you have had SO MANY biopsies - so you need to ask. Sadly - because your insurance allows them your medical team is using those procedures when a full-panel blood draw should be enough to monitor your condition or treatment progress... Jump in and chat anytime - because your 'journey' may help someone else. Sherrie
Wednesday is my 5 year anniversary of my Multiple Myeloma diagnosis. Tomorrow will be 200 day out visit for my CARVYKTI CAR-T. I too am on the IVIG regimen. It has been taking about 6 weeks to drop to the 400's, low enough for another boost. I have read that it can go normal after about 6 months. I am trying to figure out how you got by with only 3 biopsies in 12 years. I had 4 last year, several at SCT, but who's counting? I have learned that they need to give me a little something to take the edge off. My M-Spike is .2, the lowest it has ever been and MRD negative in December, a first. So, I look ahead one day at a time, but 3 trips planned this year, and make the best of it. When I was in my mid 20's a wiseman told me "Things are never as they appear to be." Later I learned "Things never turn out the way you think they will."
Hope my 'journey' helped you a little--feeling 'alone' w/a diagnosis isn't necessary... I'm curious as to why you have had SO MANY biopsies - so you need to ask. Sadly - because your insurance allows them your medical team is using those procedures when a full-panel blood draw should be enough to monitor your condition or treatment progress... Jump in and chat anytime - because your 'journey' may help someone else. Sherrie
Wednesday is my 5 year anniversary of my Multiple Myeloma diagnosis. Tomorrow will be 200 day out visit for my CARVYKTI CAR-T. I too am on the IVIG regimen. It has been taking about 6 weeks to drop to the 400's, low enough for another boost. I have read that it can go normal after about 6 months. I am trying to figure out how you got by with only 3 biopsies in 12 years. I had 4 last year, several at SCT, but who's counting? I have learned that they need to give me a little something to take the edge off. My M-Spike is .2, the lowest it has ever been and MRD negative in December, a first. So, I look ahead one day at a time, but 3 trips planned this year, and make the best of it. When I was in my mid 20's a wiseman told me "Things are never as they appear to be." Later I learned "Things never turn out the way you think they will."