Mds/mpn-uc ?

[Simmo]

Hi can anyone enlighten me as to how rare this is and what treatments are available please.
At present my dad is taking a chemo drug and having blood transfusion on a two weekly basis, recieving 3 units of blood each time his Ferritin levels are 1734.0 should we be concerned about that reading. He has an enlarged spleen his creatinine levels are 13.1 and his urea levels are 13.9 I presume the first is iron and the last two are his kidney function? When arriving for his transfusions his HB is around 6.7 his recent readings are WBC is 19.7 his RBC is 2.47 PLT are 233 Neutrophilis reading 4.6 Monocytes 9.4 Lymphocytes 5.4 his Hct levels 0.221 the other readings are all with in the specified parameters.
Can anyone assist with what changes we should look for and what forms of treatments are available my dad is 81yrs Young and also has an enlarged heart having had a stent about 4 years ago. Should I be asking the consultant any relevant questions. I know very little about the illness.
Thank you

[DanL]

True mds/mpn is pretty rare on the scale of things. I think that it is less than 5% of the overall cases. Most of these have some characteristics of MDS and Myelofibrosis if I recall correctly. One of the challenges of treatment is that sometimes MDS drugs are helpful and sometimes myelofibrosis drugs are helpful, so it may take some experimentation and observation, or additional testing. Do you know if your father has been tested for JAK2? Also, do you know what kind of chemotherapy he is on and whether he has any cytogenetic changes?

[Simmo]

All my fathers historic test are in Spanish but have found the answer to the questions you asked he has been tested for JAK2 it was negative and he has no cytogenetic changes.he is taking Hydroxycarbamide capsules known also as Hydroxyurea 500mg once a day except Friday's and Sunday's when he takes two.
He has had a bone aspersions and a biopsy
I admit to being frightened just because I don't know what I should expect or making sure I ask the right questions for each of the people I am caring for, not having the knowledge I need to make sure everyone gets a good chance of living life to the full, however long or short that maybe.
So I am grateful to you for taking the time to answer me.

[DanL]

Hydroxurea is usually used to try and treat the proliferation of white blood cells. With an enlarged spleen low HCT, and high WBC, it sounds a little more like he is being treated for myelofibrosis even though the JAK2 is not present. Hard to say. Because he may have an overlap of MDS/MPN, he may benefit from MDS treatments in addition to or apart from the hydroxurea. As I previously noted this may be a matter of experimentation to find the right mix and reduce his transfusion dependency.

[Simmo]

Thank you for your reply.