My husband is 32, and has just been diagnosed with ET (negative for JAK2, CALR, MPL and BCR ABL) and we are waiting on further info. His platelet count is very very high and not budging yet - around 1.7m despite taking high doses of Hydroxycarbomide for a week now (about 4g a day). All other blood cells are normal and only stage 1 fibrosis in marrow.
The haematologist said today that his blast cells were irregular shapes and sizes which has me terrified it’s leukemia. She’s not mentioned this and is taking it to a multidisciplinary meeting to discuss further then we’ll
Know more .
This is all very very new and we’re struggling to get our head round all this new info as it is.
Does anyone know how long the meds take to work to bring platelets down?
If he’s negative for BCR-ABL mutation, what could these abnormal size and shaped blast cells mean?
I know you aren’t doctors but I wondered if anyone had any experience of this. I’m really overwhelmed!
Thank you!
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intothewoods
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My heart goes out to you and your husband: you are so young to be facing a potentially serious blood disease, whatever it turns out to be. If the there is a multidisciplinary team looking at the results, then that’s the best way of getting to the right conclusion, and the right treatment. In the meantime you could call a helpline if you want to talk about how you are feeling: the Samaritans are there 24/7, and no, you don’t have to be suicidal to phone them! Just more worried than than you can handle.
I'm sorry to hear about your husband's blast cells. Blast cells aren't normally seen in ET. Were the blast cells found in his blood or bone marrow? It sounds like even the doctor is asking for second opinions. If it were me I would request copies of his bloodwork and BMB results. You may want to research myelodysplasia. Myelodysplastic syndrome causes cells to be irregular shapes. Myelodysplastic syndrome usually causes thrombocytopenia but in 5 percent of cases it can cause too many platelets. My thoughts are with you and keep us updated.
I should clarify...it is normal to have a small amount of blasts in your bone marrow but it sounds like your husbands doctor is more worried about the shape. Also, if I remember correctly sometimes something as simple as a vitamin deficiency can cause cells to look abnormal sometimes.
I do sympathize with you, and hope your husband gets sorted out soon. My wife loyce was eventually given high doses of Hydroxy when her platelets were around the 2 million mark. After four days of no change she was given Anagrelide which worked quickly and well while in hospital. Since August she is doing really well and now on 3 Anagrelide a day and one hydroxy every other day. Her platelets are reasonably stable at around 200,000 and she has bags of energy. We can tell if her platelets go higher than 400,000 as she fall asleep in the evening!. Her hgb is slightly low but does not seem to affect her. Maybe ask about Anagrelide? All the best Steve.
the weekends can seem too long when waiting for hospital appointments that require important answers. You have my sympathy!
I have no idea what the ‘blast cells’ mean, but I’d try and remain calm until further explanation is given. Use this time to write down any questions that you need answering so you’re well prepared. There’s nothing worse than walking out of an appointment and realising you haven’t asked that one important question.
Everyone responds differently to hydroxycarbamide. For me it worked quite quickly. A week is still very early days, I’m sure before too long you will see some results. If not, your haematologist will try another drug.
Hello, it is a very overwhelming time for you both, hopefully you will have more answers after seeing the haematologist today, let us know what they say. It might help you and your husband to have a buddy to talk to, a buddy is someone who has the same MPN, and takes the same medication and can give help and advice from the perspective of someone who really understands how you are feeling, we have buddies for family members as well, if you feel this would help please email me at buddies@mpnvoice.org.uk for some more information. Best wishes, Maz
Thank you - I will definitely see if he’s interested in a buddy. What a brilliant scheme.
Just wanted to share the good news - blast cell thing was a false alarm and he has the all clear for MPS and leukaemias. They say it’s a just a bog standard case of ET. Never been so relieved to have a cancer diagnosis hah!
What a scary weekend but I’m glad we can now get our heads round the ET diagnosis.
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