I am 62 years old and I’ve very recently discovered that I have an enlarged spleen ( found incidentally) and a high platelet count apparently originating from my bone marrow. My consultant haematologist looked through my medical records and it seems my platelet count has been increasing since 2019. She informed me I was at risk of clots forming. I am due to see her again late January when she plans to start me on chemotherapy tablets. Unfortunately I’ve completely forgotten what she called the disorder. Just wondered if anyone else suffers from the same thing?
Hi CateW and a warm welcome to the Community although I am sorry to see you joining the community. I am Mike and I help out around our various Blood Cancer groups.
I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Non Hodgkin's Lymphoma eventually reaching Stage 4a in late 2013 so I do appreciate the challenges of this journey rather well.
There are many types of blood cancers..... does any of the ones below ring a bell with you?
Lymphoma (there are over 60 types of Lymphoma)
Myeloma (there are few different types of Myeloma)
Leukemia (there are few different types of Leukemia)
Myelodysplasia (MDS)
Myeloproliferative neoplasms (MPN)
Essential Thrombocythaemia (ET)
Polycythaemia Vera (PV)
Myelofibrosis (MF)
Get back to me and I will help you out further.
Thanks Mike. I’m very pleased to meet you.
My consultant is a lovely Indian lady but her accent is very strong. In hindsight I should have asked her to write it down for me. The only other bits of the conversation I remember are there is a risk of bone marrow scarring and my lymph glands are NOT enlarged. I have a number of symptoms but they seem common to many blood disorders.
i’m sorry I’m so vague 
Hi again, what you have described does indeed fit with a number of the many blood cancers.
I just can't take a stab at what of the many blood cancers this is as many do react very differently so I can't safely direct you to the best group for you.
Could suggest that you either put a call into the Hematology Unit and ask if they can actually give you the exact name of your blood cancer...... just explain that you were not able to catch what it was called. as you could not take all the information in....... or call your GP surgery and ask they as they may well have been informed.
Once you have the name do get back to me and I can help you more connect in..... but I am still here to help out as you try and get clarity.
Hello again Mike
I have now received a l booklet from the hospital about Essential Thrombocythaemia, which I’m guessing is my primary diagnosis. There is also an information sheet about the drug Hydroxycarmabide.
I’m due to see the Haemotologist again on 25 January. Are there any specific questions I should be asking her please? 
Hi again, Essential Thrombocythaemia (ET) is one of a number of non mainstream blood cancers that include Lymphoma, Leukemia and Myeloma.
ET is a slow growing condition that has treatment options available when required. ET is rather different from my Non Hodgkin's Lymphoma so you are best to connect up with others who have ET so I will direct you to our ET support group.
To connect in with the group click on this link> MDS/MPN/ET/PV/myelofibrosis (MF) then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
You can also look through the thread headings and as always you can reply to any post in the group.
I will keep an eye open for you in the group but I would hope that some of the ET group members will pick up on post.
