Essential Thrombocythaemia query

Hi CateW  my father has ET, he was diagnosed in 2020. Like you, he had had it for a few years prior to the diagnoses. Routine blood tests were showing that his platelets were raised, but ET was not picked up. I don’t know if it was missed because of how rare ET is, or whether the platelets were not raised enough to show too much concern at the time. 

Unfortunately fatigue is a symptom of ET, as is an enlarged spleen. My father has been on a chemotherapy tablet since diagnoses which he takes daily. It took a few months to get the dose correct, but he is doing really well now and his platelets have stabilised. 

Waiting to see the oncologist is frustrating. That seems like an awful long wait for you! Are you having any more tests before then? Scans maybe?if you are I can understand the delay as they will need time to get the reports back, If not I would personally phone them and ask if you can see them sooner. Being told you have ET then having to wait so long to speak to someone about it doesn’t seem right. 

Please let me know how you get on. 

Hi Chell.  
Thank you so much for your kind reply.  I’m delighted to hear your father is doing well on his meds.  I have to admit, the thought of starting chemo is a bit daunting.  I already take meds for high blood pressure and cholesterol following  2 heart attacks in 2017.   I’ve taken low dose Aspirin every day since then.  Finding out I have ET just a couple of days before Christmas was a bit unfortunate due to people being on holiday.  I did see the Haemotologist briefly and yesterday I received an information leaflet in the post so I’m a little more enlightened.  I’ve also had another blood test and I’m due another one a couple of days before my appointment.  There’s been no mention of any other tests/scans at this point. 
May I ask if your dad had any bone marrow tests? 

Very kind regards 

Cate 

Good morning CateW and good to see that you were able to navigate across to this group and put up your post.

Great that my friend chellesimo has put up a reply as it's good to talk with others who have first hand experience of ET be it as a patient or a carer....... I was holding back to put an initial reply as my blood cancer is rather different.

Heamatology Units across the country are amongst the busiest clinical units in most hospitals........ but if you are in anyway concerned at any time do call the unit and see if there are any earlier appointment ot cancellation.

Have you been given the name and contact number/email for a Key Worker often called a Cancer Specialist Nurse (CNS)?........ as they would be your go-to to talk with.

You may want to check out MPN Voice a support network for people with MPNs (myeloproliferative neoplasms) providing information and support.

Do also check out for a local Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups some in-person and others are online so you can connect in from anywhere in the UK….. the one I attend does have a few folks with ET in it so worth checking.

Sending supportive ((hugs)) and remebr this group is here to support you or for you just to have a chat.

Aw, thank you so much Mike.  I will certainly check the groups out as things progress.  
No I haven’t been assigned a Specialist Nurse as yet.  Maybe that will happen at my  next appointment. 
Thanks once again for your support and hugs.