Mds-mpn

[pleasant1911]

My father was diagnosed with MDS about two month ago, and I found out today that that he has MDS-MPN. Does anybody know more about this form of MDS? I google it but really did not help. Can anybody give me some information about MDS-MPN?

He is currently taking revlimid, 5mg every other day... His blood count dropped, but it dropped slower than last week. somebody please give me the 411...

[DanL]

Originally Posted by pleasant1911

My father was diagnosed with MDS about two month ago, and I found out today that that he has MDS-MPN. Does anybody know more about this form of MDS? I google it but really did not help. Can anybody give me some information about MDS-MPN?

He is currently taking revlimid, 5mg every other day... His blood count dropped, but it dropped slower than last week. somebody please give me the 411...

Pleasant,

First, let me say that I am sorry that your father has been diagnosed with MDS/MPN. Was this his first biopsy done? The reason I ask is that frequently MDS and MPNs look similar, but over time, the characteristics of one or the other become dominant. True MDS/MPN overlaps are kind of rare, especially with the new MDS with Fibrosis category.

Basically to understand MDS/MPN, you have to know that they are very closely related and can be difficult to tell apart. I am assuming that your father has the -5q deletion thus taking revlimid. Revlimid is an interesting drug in that it is used for both MDS and MPNs with effectiveness.

The reason for being a little circuitous to your answer is that MDS/MPN is very rare amongst already rare diseases. From what my doctors have told me, the name does not much matter. At the end, they are both blood diseases that lead to cytopenias that require treatment at some time.

Just like MDS which has several classifications, depending on which system you use, MPNs are divvied up into general categories:
JMML
Atypical CML
Chronic Myelomonocytic Leukemia

Here is a good starter page:
http://www.cancer.gov/cancertopics/p.../Patient/page1

I think that it is good to go to your father's caregiver and get as much information about the disease as you possibly can and understand why he is receiving each treatment that the doctor recommends.

[pleasant1911]

Thanks for the response. For the past month i thought my father had the 5q... MDS type, but today the doctor told me he did not have the 5q deletion, but instead he has MDS-MPN.

I will have to call the doctors office tomorrow and get his medical file.

[MaryS]

My dad has both of theses diseases too. It is very rare! He was diagnosed in Oct of 2013. My dad went to MD Anderson in Houston. He qualified for trial with Vidaza and Jakafi. He was unsure about it so didn't do it. He was going to wait and watch and do procrit shots. Severe hand pain developed . This was debilitating . Doc couldn't figure out this. 3 month later Lymph nodes neck, groin ect... My dad dx couldn't get any worst,but it did. Third diagnosis a rare and aggressive non Hodgkin's lymphoma.
We r back at MD Anderson . It is very complicated.
They are treating his MDS with Dacogen / Lymphoma with Prednisone( because he can't do the treatment of ChOP this is Heavy duty chemo because of his already diseased bone marrow. We are about to try Jakafi for the MPN . Jakafi helps with symptoms of MPN( enlarged spleen, itching ect... It is suppose to help a lot)
My dad is in a pickle and his life expectancy could be less than a year or less. I hope for quality of Life. My dad finished his second round of chemo. Not sure about how it is working. He feels weary all the time. He tolerates the chemo ok. His counts go up about 7 days before the next round and than he has to do it again. He is not eating well, and has to get transfusions at around 14 days. His platlets are low post day 24 of second round of chemo. Doc wants to start a low dose of Jakafi even with his plt. Being so low .He is not sure if it will work or not. That might be next week. Who knows what the Lymphoma is doing. We get a PET scan next week to see if the dacogen and the prednisone is doing anything.

I am here in Texas with my mom and dad. Please check out MD Anderson about MPN MDS this is the place to be!!!!!!!! I am sorry about your dad diagnosis
It is hard.

Mary

[MaryS]

Originally Posted by pleasant1911

My father was diagnosed with MDS about two month ago, and I found out today that that he has MDS-MPN. Does anybody know more about this form of MDS? I google it but really did not help. Can anybody give me some information about MDS-MPN?

He is currently taking revlimid, 5mg every other day... His blood count dropped, but it dropped slower than last week. somebody please give me the 411...

Pleasant,

Jakafi is the treatment for primary myleofibrosis. It alleviates symptoms associated with the dx Ex. Enlarged spleen, itching , and night sweats. Do a google on patients who take Jakafi for myleofibrosis.
However, it can lower the blood counts like the other chemos but should level off after a few months. My dad may start this week on it but his situations has changed due to the lymphoma. We want him to get it.
Please read up on it!

Best of luck
P.S. It is very rare to have these two together.

[gramous]

hello,
my boyfriend has also a mds mpn type. That's called rars-t in our case... too much platelets with anemia... has your father the jak 2 mutation? revlimid works not good for this subtypes.... for the platelets management, hydroxurea.... What are your father's counts? kind regards

[rich7]

Following. Was advised by oncologist MDS looks like MDS/MPN overlap. I?d like to learn more to be prepared. As of now, it?s watch and wait with periodic therapeutic phlebotomies.