Hi,
I saw haem a few weeks ago where she thought I had Essential thrombocythemia (ET) due to jak2 positive test. She carried out a bone marrow biopsy and I have received the results today. It confirmed Jak2 and platlets looked inline with Et but they also found deletion 5q chromosome in my bone marrow indicative of Myelodysplastic syndrome (MDS). I was a little shocked and didnt ask any further questions. Does anyone else have this combination? I feel a little overwhelmed.
Hi @Joo1es and a big welcome to the forum.
I completely understand how you are feeling. I have a different blood cancer but at my initial diagnosis appointment, everything was a complete blur. It took all I had to try and process what I was being told, let alone think of any questions. I have always advocated that you should be offered a follow up appointment but I don’t think there is the time.
Can I ask, was it you consultant who gave you your results? If so, were you given contact details of a clinical nurse specialist or information about next steps?
I hope there will be others who can share their experiences. I would suggest writing all of those questions down ready for your next appointment and if possible, take somebody with you so that they can support with asking the questions and can be an extra pair of ears.
Apologies in advance if you have already been given information but I thought I’d give you the link to the BCUK information as it helped me a lot and stopped me googling as much.
The support line is also a godsend and you can ask some of those questions you have.
Please take really good care of yourself. Emotions are hard to navigate but I’m glad you have found us. On here you can say how it really is for you X
Hello Joo, 5 years ago, I was diagnosed with Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap - U. It is a rare combination and is a question of keeping a balance. My treatment has been Aranesp injection weekly (EPO) to help the production on HB and Hydroxycarbamide to control the platelets.. This involves regular blood tests, visits to the hospital and adjustments to doses as necessary. I have been very fortunate in having a brilliant haematologist who answers all my questions. The Blood Cancer UK booklets for Myelodysplastic syndrome (MDS) and Myeloproliferative neoplasms (MPN) are very helpful so you have come to the right forum. Try not to worry too much. Do please keep in touch as there are not a lot of us! If I can help you with any questions, do let me know. Very best wishes Kate x