Has anyone been diagnosed with both MDS/ MPN

[MaryS]

My father has both MDS/MPN diagnosed Oct 1 2013 age 77. He has <5% blast and no spleen enlargement. He is currently taking procrit. He has been accepted to do a trial at MD Anderson in Houston. 15 months of Vidaza and Jakafi. My father is afraid that the medicines may cause a cascade of events that could make him worse off. For instance, Vidaza could cause his counts to go down and start him doing blood transfusions. Can you even wait and watch with MPN? There are so many decisions to make. on the other hand the meds could maybe put him in remission, if there is such a thing. Does anyone have any input on this matter, and did you feel the same way as my father does. Thank you very much.

[bebop]

https://www.voicesofmpn.com/myelopro...FTRk7AodOT0AHQ

http://www.mpnresearchfoundation.org/

this is what I found on it. I have never heard of it but to me it sounds like another way of saying mds. I am no expert so I am not sure.

[MaryS]

My fathers more specific dx is MDS with refractory cytopenia with multilineage Dysplasia and Myleofibrosis-1 (Out of 3) JAK-2V617. doctor said it is rare.About 300 cases a year.

[slip up 2]

Mary.... this is a very interesting & important trial....using the combination....my late husband was diagnosed with both the MDS first then MPN added....Jakafi was only just approved in Canada, and we were too far along in the disease to use the drug.

The Vidaza might pull his counts down for the first few months then if the Vidaza is working they will level out & become what we might consider (normal). The Vidaza worked for us for about 9 months & that is considered normal...some it works for longer & some not at all.

If the combination of the both drugs work that would be fantastic....the MPN is very painful when the spleen enlarges, we tried radiation on the spleen, it worked for a bit to shrink the spleen, then started to enlarge again.

Mary, one thing i would like to say about this trials they are not always perfect......because of trials we have many new drugs that have helped people live longer.

Tell your Dad all the best none of it is an easy decision & the one he makes will be the right one for him.

kate

[slip up 2]

Mary the study.....if you google......NCT01787487 Clinical Trial .gov.....is this the trial for your Dad?

[gramous]

Hallo,

my boyfriend who is 55 y old is also MDS/MPN.... He has a RARS-T, myelodysplastic syndrom with ring sideroblast and thrombocytosis with jak 2 positive assicuated... He's taking 1 hydrea a day for the platelets management.
The MPN aspect is predominent over the MDS aspect... His worst results were hg 8, white 2000, platelets 2300000 in april this year. Since that nature diet and now last blood resulmts this month : hb 13, white 4400, platelets 400000.
We chose of no other treatment than hydrea takern because jakavi has an slide effect over the hemo level in a recent study and has an effect over the spleen size but my boyfriend has a normal spleen's size...
Take care, béné

[MaryS]

Thank you so much for your feedback. I do appreciate all of you.xoxo
Slip up 2- my father did not make it into that trial, however the trial he would be in would measure 10 people, and it would be the same meds, but it would be evaluating the effects for only MDS. They already have 7 people. They need to make a decision. My father is Leary.they will be speaking to their oncologist in New Orleans today to ask questions. As you can imagine, my parents are a bottle of nervous.i think he should try it,even though he doesn't have many symptom now, eventually he will example enlarged spleen. My father worries about quality of life, and as a nurse I can appreciate that. I will update about this as it unfolds.

I appreciate the cancer researchers. They are Hero's ! They are working so hard to help us and make life better. They have come a long way. MD Anderson has been very compassionate to my parents. I value compassion as a Nurse, especially in doctors. A doctor having compassion can make a difference in the way a patient deals with his/her disease.

I am In this with you and value you and your support

[MaryS]

http://www2.mdanderson.org/depts/onc...an/1-11-1.html

[Caregive]

My husband was diagnoses with MDS last year plus. Now a third opinion or the passage of time says he has MDS/MPN overlap. Not sure what will happen next. He is more tired than the past year and not eating as well though I'm preparing vegs from the garden and so many healthful foods as I can. Also trying to keep him busy with the outdoor stuff. We'll see the local refering doc in a few days to find out what's next. I'm sad. He's been such a good companion and so upbeat but now not so much. He's 82 and has had so many other health issues. I'll try to keep him going and in the process myself. I pray for us all. And so thankful for the ongoing research. I'll be ready to make a donation to AAMDS again soon.