[Robin Smith]

Upcoming 2022 Webinars for MDS Patients & Caregivers

Is this what you’re looking for Mary? If so, either click the link or hover your mouse over “For Visitors & Patients” located in the blue bar at the top of your screen and then click on Webinars for Patients and Caregivers (located in far left column about half way down). Take good care.. Robin

[Robin Smith]

Fingers crossed for you and sending much luck. Hang in there.. none of this is easy. I think you’ll really like UVA though.. let us know how it goes.

[Robin Smith]

Run a search of luspatercept using the Forum Search box. Everyone does respond differently to almost all these medications with so many various factors coming into play. However, some forum members have had very positive results with luspatercept. I’m currently two years into thirty units of weekly Procrit. My doctor at UVA has mentioned that my next step will most likely be luspatercept. I’ve experienced good results with Procrit and have been able to live a relatively normal life, for which I’m enormously grateful. Thinking sooner or later I’ll be seeing how it goes with luspatercept. I’m remaining cautiously hopeful. If you do try it, let us know how it’s going. Stay well, Robin

[Robin Smith]

I have problems with gripping at times and can symptomize with your frustration.. especially if you like working with your hands. You might want to have a neurological evaluation done. I’m much older than you (76) and I’m thinking age alone most likely contributes to my difficulty with gripping and the occasional tremor, but at 58 I wouldn’t think that would be the case with you. Do you also experience tremors? I’ve not run across an association with MDS, but it still could be related to it in some way.

[Robin Smith]

I’ve had two BMB so far (diagnosed in 2019). One at St. Mary’s in Richmond and one at UVA ordered by Dr. Michael Williams, the doctor I initially saw there. At my last visit with Dr. El Chaer, in early January, he didn’t mention setting up a BMB so neither did I 🙂 My next appt. is scheduled for early April so I’m thinking he’ll say something about it then, if he intents a BMB to become an annual test. I’ve not been on watch and wait. My hemoglobin was low at the time I was diagnosed so I began 20 units of Procrit on a weekly basis. Grateful I’ve had a good response with it for a little over two years now. I’m also low risk, btw. Happy to see you’re on watch and wait and hope that status remains for a good long time.

[Robin Smith]

Hello Buddy. I’ve been going to UVA for a little over two years now. I see Dr. Firas El Chaer who I believe is in the same department as Dr. Keng. I’ve not seen Dr. Keng, however I’ve had an extremely good experience at the UVA cancer center and certainly with Dr. El Chaer. So far, everyone there has been very caring and professional. Sending you my very best.. take good care, Robin

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