Community Member
a month agoI have myelodysplastic syndrome and I'm currently taking acyclovir to help prevent viral infections. I've been dealing with multiple health needs alongside my blood disorder, including previous treatments for blood pressure, cholesterol, and pain management. Recently I've been experiencing very severe bone pain, which I plan to discuss with my oncology team. I'd love to connect with others who have myelodysplastic syndromes and hear about your experiences managing this condition. • How do you handle bone pain or other symptoms that come up? • What has your experience been like coordinating care between different specialists?
Community Member
a month agoPersonally I see no out on this subject, it’s a grin and bear it situation.
Community Member
a month agoManaging bone pain with myelodysplastic syndrome can be challenging, and bringing this up with your oncology team is exactly the right step. Many patients find success through coordinated care between their hematologist-oncologist and pain management specialists, while others benefit from discussing both medication adjustments and supportive care options that can help with comfort during treatment.
Community Member
22 days agoNot sure if this helps. Was diagnosed with low-grade MDS 2 1/2 years ago had five sessions of chemotherapy, which seemed to put my MDS intermission Approximately one year ago, my MDS elevated from low-grade to high grade I then became dependent on blood transfusions for both hemoglobin and platelets on a weekly basis. That was a horrible time. Applied and went through the qualification process through Moffitt Cancer Center. Then received a bone marrow transplant about six months ago. The hospital stay was long 53 days. It was tough but six months later my biopsy is showing that my boomer is cancer free so there is hope. Good luck and God bless  
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