I’ve recently just been diagnosed with Essential thrombocythemia and have the CALR mutation.
Had a telephone appointment from heamotology doctor and got my first proper appt with the specialist nurses in couple of weeks.
I started with a constant 24/7 headache about 6 months ago and told by my GP it wasn’t related to high platelet count, therefore got treated as a type of migraine. I’m taking propanalol but over last few weeks headaches coming through again, feeling very fatigued as well
What will be discussed on my first appt with the specialist nurses?
Written by
Grendall
To view profiles and participate in discussions please or .
Thats how I was feeling for six months before being diagnosed with ET .Headache all day and night and fatigue was really bad . Platelets were get higher and higher each time they tested me .I am now taking hydroxcarbamide .
Thank you for that Daisey, I used to have migraines about 15 years ago but these headaches are ‘bearable’ dare I say with paracetamol albeit as I said they were 24/7 which I found unusual.Do you live in the Uk or not please? As I was just wondering how often you are monitored with appts and blood tests etc.
The Doc just told me over the phone to start on Aspirin and that was it. I have done loads of research into it but I am not sure if it is ‘serious’ or not, I don’t know how to respond 😟
I was being moited with bloods with gp .Until I got my referral to hospital in December.I got a diagnosis from then .Since that I go about every 4 weeks until they get the right dosage . I hope this helps and yes I do live in UK
hello Grendall and welcome to our forum. Headaches and head pain are one of the symptoms that are associated with ET, many people do experience them in varying degrees of severity, and it is definitely something you need to discuss with your haematology nurse at your appointment, and ask them for advice on suitable pain relief.
It is advisable to start writing down your questions, all the things you want to ask and know about, and take the list with you, it does help to keep you and the nurse focussed on what you need and want to know, it can be very easy to forget something when you are going through everything, especially at your first appointment.
Suggested questions are: what are you risk factors; what is the suggested treatment plan, if they are going to start you on medication, what is it; how often will you be reviewed; who can you contact if you have any questions or concerns between appointments.
Hi Mazcd, thank you so much for replying. I have researched as mush as I can but thank you for the suggestions I will certainly look into these.It is a minefield with it being a rare disease that’s for sure 😳
Hello Grendall. I was diagnosed with CALR positive ET a few months ago. I’m 78. The consultant prescribed 75 mg aspirin daily. Furthermore, after bone marrow biopsy and a range of blood tests confirmed the original diagnosis I’m on fortnightly jabs of Pegasys interferon alfa2. My very high platelet level has reduced considerably. I am not fatigued.To start with, I had an appointment with the consultant haematologist every 4 weeks but now it’s every 6 weeks. I live in the UK.
Hello and welcome to the forum. Glad you found your way here.
As Mazcd points out, headaches are a common issue for people with MPNs. This is often a microvascular issue. It is not just about how many platelets there are. It is about how blood cells interact with the vascular endothelium. many people find relief with cytoreductive therapy and/or with blood thinning medications like aspirin.
I also experience a type of migraine for unrelated reasons. If migraine is the issue there are other very effective ways to treat the issue. I have used a CGRP inhibitor (Ubrelvy) with great success. Many people with migraines find the different CGRP inhibitors very effective and easy to tolerate (few side effects).
It is a very good idea to go to all appointment's prepared with a list of what you want to cover. I use a set agenda format that looks like this.
Treatment goals
Define for your doctor what your priorities are. Can be very specific at times.
Treatment Approach
Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers all the interventions you use
Updates/Issues/Questions
Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment
Treatment
Review all treatment options – let the doc know what you are doing now and seek input on what else to do next. Ask about ALL options, not just the one the doc recommends. Ask the doc to explain why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your own risk tolerance and what risks you prefer to take.
Hope this helps. Please do let us know how your appointment goes.
I really appreciate this information and advice. I will use all of it now.
I think for me as well, I have informed family and friends but with it being a rare disease they don’t seem to be taking it seriously.
I know it can just be mild but I am 58 now and the Doc did say on the call that it tends to increase from 60yrs onwards.
I just want family to respect it, if it is worth them taking it seriously for my sake. The reason I say that is I am a person who has just ‘always got on with things’ so they always assume I am ok!😁
Depending on which protocol the doc is following, ET is considered to be "high-risk" at either age 60 or 65. This is a reference to risk of thrombosis. Whether you are individually at elevated risk is another matter. This is an issue best reviewed with a MPN Specialist to evaluative your individual risk profile at any point in time.
At age 58 ET CALR, the standard protocol would be aspirin and monitor in the absence of co-occurring risk factors. This does not mean that ET is not a serious condition but it is one that can be managed. What you a well find is that the secondary constitutional symptoms are more bothersome than the primary risk factors of thrombosis and hemorrhage.
The CALR mutation deregulates the JAK-STAT pathway. This does more than just make you body make too many blood cells. It also causes the overproduction of inflammatory cytokines. This is responsible for many of the symptoms we experience. Learning to manage these symptoms is the key to maintaining a high quality of life.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Recently diagnosed.
Recently Diagnosed-ET-Does Fitness Suffer?
RN recently diagnosed with ET- worry about COVID19
Recently diagnosed with ET
Recently diagnosed with PV
