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This is such great news! Does your form of MDS include sideroblasts?
Everyone makes their own decisions. Not everyone with MDS has a compromised immune system, often measured by the ANC. My del-5q friend does not have a compromised immune system. This article from the University of Chicago, which makes the point that some protection is better than none, may help. https://www.uchicagomedicine.org/forefront/coronavirus-disease-covid-19/immunocompromised-patients-covid-19-vaccines
The care team at an MDS Center of Excellence were actively helping my friend with MDS find a place to be vaccinated. All were relieved when she received her first Moderna dose a week ago. She experienced pain at the injection site and upper arm pain. The care team told my friend that their patients typically report a low-grade fever after the second dose and recommended Tylenol if needed. Everyone is different and you should check with your doctor.
I have no results but I do have questions. Are there more reports from those without “side blasts” who have taken L?
I am very interested in “L” but nothing to report. I wonder if there are recent reports from others.
Len – I have been thinking about you and I wonder how things are going now?
James – that is fantastic news! Do you have sideroblasts?
If someone at the Foundation, or anyone for that matter, who has information about Medicare coverage for Luspatercept – please post it here.
I could not find definitive information about Medicare coverage. It would be great if someone has that information and posts it here. A patient would not necessarily know the case made by their oncologist nor the circumstances that led to approval.
Celgene provides assistance for REBLOZYL including “educating patients about insurance coverage or other programs for which they may qualify.” There are restrictions.
I hope Luspatercept works for you. This is such a new drug that you are doing a real service by posting your experience and I hope you will hear from many others. I am not there, yet. I have not read anything about this drug at Marrow Forums and perhaps posting there will attract readers who are also using Luspatercept so you can exchange information. All the very best.
Len and others taking Luspatercept. Can you give an update about Luspatercept and how it is woking for you?
Post your location and someone at the Foundation will give you the names of the closest Centers of Excellence. Include contact information and the MDS Center staff can be even more helpful.
I am not sure where you live; however, it is always better to go to a Center of Excellence. The real expertise is at one of the Centers. They just see so many more patients and I would be shocked if you were given a handout. Try to find someone to drive you.
I have a very difficult time accessing the Centers of EXcellence List at this site. Perhaps after reading this someone at the Foundation will send you a message with a list of Centers of Excellence in California.
The best advice is always to go to an MDS Center of Excellence even if the nearest one is at some distance. The difference between a competent hematologist and a hematologist at a Center of Excellence can be quite stunning.