Does anyone else have more than one myeloproliferative disorder?
Hello. I am new to this group and looking to connect with fellow members who are dealing with MPD. I have Essential Thrombocythemia as well as Polycythemia Vera. Does anyone else have more than one MPD?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Hi @bohobruja Welcome to Mayo Connect. The National Institute of Health defines chronic myeloproliferative disorders as a group of slow-growing blood cancers in which the bone marrow makes too many abnormal red blood cells, white blood cells, or platelets, which accumulate in the blood. The type of myeloproliferative disorder is based on whether too many red blood cells, white blood cells, or platelets are being made. In your case, you have too many red blood cells and platelets, both, in overabundance can cause some health issues.
https://www.ucsfhealth.org/conditions/myeloproliferative-disorders
https://www.healthline.com/health/cancer/myeloproliferative-disorders
Let’s get you connected with members who have either ET or PV.
There are current ongoing conversations in both groups. Here are few discussions in the PV(over production of RBC) group to introduce you to @kibbykyle. @learnandlive. @vmg44. @mongoglb39 @mordonmordon @randles14 @chadknudson.
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
Fellow members who have Essential Thrombocythemia, the over production of white blood cells, are active in this group where they’re discussing the treatments for ET. Please let me introduce you to, @nohrt4me @eileen11108 @claire39 @anno @garyinmo @treeore @rjgregory440 @eansgardengirl @arti4.
-How did you make the final decision to begin HU protocol for et?
https://connect.mayoclinic.org/discussion/how-did-you-make-the-final-decision-to-begin-hu-protocol-for-et/
MDS can sometimes be referred to as MPN, Myeloproliferative neoplasm.
Some of the same members I introduced above have discussions with multiple forms of the disease.
-Myeloproliferative neoplasm Anyone else have a similar diagnoses?
https://connect.mayoclinic.org/discussion/does-anyone-else-have-a-similar-diagnoses/
How long ago were you diagnosed? Are you currently taking medication? Was there a mutation involved in your diagnosis?
Welcome to our group. I was very interested to read that you have both ET and PV diagnoses. Did you have a bone marrow biopsy or have any mutations such JAK2?
I am 78 and I was diagnosed with ET JAK2 in June 2022. I had extensive labs and bone marrow biopsy.
My only suggestion to you, if you are not already seeing one, is to seek out an MPN specialist at least for a consultation.
Best wishes to you on your journey. Eileen