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Discussions (87)
I have recently been diagnosed with MDS, and have so many questions.
I have just been diagnosed with MDS, and have so many questions. I will be going to Mayo Clinic for follow up opinions and understanding...
MDS types: How did you find out what type you have?
Hi, I haven’t posted in a while however I follow daily. I keep seeing there are different types of MDS and it’s important to know...
MDS: Can someone explain how or why platelets go up or down quickly?
Can someone explain how or why platelets go up or down quickly. My diagnosis was MDS after a bone marrow biopsy and I was sent...
Use of Neupogen (or similar) prior to minor surgery
Has anyone with MDS used Neupogen (filgrastim) or similar prior to minor surgery to reduce the risk of infection? My concern is that even a...
Is there best day for bloodwork during the Revlimid cycle?
https://connect.mayoclinic.org/discussion/is-there-best-day-for-bloodwork-during-the-revlimid-cycle/
Practice nurse recommended bloodwork for MDS during the off week in Revlimid cycle. Doctor thought it didn’t matter.
Myelodysplastic Syndrome and Sjogren's
I have been studying MDS and SS (both of which I have) and am beginning to see an overlap. I would appreciate others input.
Anyone familiar with DDX41?
I just saw the pathology report from the hospital in regards to my low white blood counts and low b12 level. They noted DDX41 (R525H)...
Aplastic Anemia and vaccine influences
As a recent (12 mo) MUD stem cell transplant recipient I am faced with making a decision on pursuing a COVId vaccine. Prior to diagnosis...
Side effects of Vidaza injections
My mom who is 85 was diagnosed with MDS in 2019. Started with anemia and now progressed to CMML 2. We started 5 days of...
Anyone experienced a flare of autoimmune disease starting Revlimid?
Hello I have just completed one cycle of Revlimid 10mg for MDS del5q. However after the first week, a horrible lichen sclerosus flare began, despite...
has anybody used epoetin alfa (Procrit)
my husband has RAEB and was recently put on Procrit. Does anyone have any experience with this drug for any of the MDS diseases? Am...
Can Blood Counting Machines Be Wrong?
My wife's CBC blood counts have been low for 18 months (see chart). Is there any chance that the numbers are, in fact, false readings?...
How long can we be on azacitidine (Vidaza)?
,m 68 years old, being with MDS for the past 3 years, 2 and haft years on Vidaza, seems working fine , but for the...
I am newly diagnosed with AML. with the inv(3) mutation,
I am Vicki, age 71, and was diagnosed with AML this month. It started with an MDS high risk after biopsy in April. Has since...
Have your copper levels been checked?
Yes, MDS is defective bone marrow not producing enough healthy cells. There is a correlation between low WBC and low levels of copper. I have...
question for oldtimers
Since joining after my MDS diagnosis, I have noticed some people join Mayo who do not have any type of blood disorder or cancer. They...
Blood work question: Abnormal lymphocyte and Large Platelets?
Hi, I have MDS and just got my latest blood test Tuesday. He was not as chatty as usual just said my platelets were the...
What's the danger in longterm use of filgrastim (Neupogen)?
Can you tell me your experience and your doctor’s cautionary information about long term injections of Filgrastim? You may know this by other names such...
Has anyone had hearing loss after Azacitidine injections?
My husband was recently diagnosed with MDS-IB2, a total shock to us. We found out on a Friday and he started Vidaza on Monday. He...
New Dr different diagnosis
Hello everyone. I had written a month ago or so that I was trying to find a new doctor that deals with blood issues/cancers. Yay...
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