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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

My Platelet Count Suddenly Jumped From 450 To 650 In A 3 Month Time Period. Dr. Cannot Account For It, Just Wait & See. Anyone Have Ideas?

A myMPNteam Member asked a question 💭
Salt Lake City, UT
August 27
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A myMPNteam Member

Given that you are new to this diagnosis, I understand the toll it takes on you and how difficult it feels to share it with the people around you, especially when gender stereotypes require you to behave strong. But those stereotypes are just that, stereotypes. It is OK to be vulnerable, irrespective of your age and gender. And illness does not know it needs to follow gender stereotypes. You have the right to be supported through an illness that makes you vulnerable, just like any other human.
You have one life, and this is not an easy diagnosis, so living with it as a personal burden might take a too high toll on you. So if you can find ways to share your diagnosis with someone trustworthy and compassionate, that would reduce the stress on you.
I have some posts on this support group on how difficult it was for me to share this diagnosis with my environment and get support. They thought this illness is an allergy and were quite upset when I did not improve after they wished me to improve. They felt hurt I dared to be too sick to be available to them. That was a wake up call that I need to address what others expected from me and organise my life so that it answers to my current needs. It was not easy.

If you can afford therapy with a therapist who is specialised in chronic illness, that is a safe way to learn how to disclose about this illness and to whom to disclose to get some support.

Regarding aspirin, small dose of aspirin, that is often prescribed for younger patients who do not need cytoreductive medication yet, but have elevated platelets. A level of platelets of 600,000 probably should warrant small dose aspirin in absence of other issues such as signs of thrombo-hemorrhagic events.

August 28
A myMPNteam Member

I agree to the points you mentioned.Everybody is different so treatment should be based on the person.I have this stress because of recent diagnoses and also because I can’t share with people around me.I am a man in 40s so expected to behave strong.So these symptoms could be because of stress who knows.

But you are right I will have an eye exam to find out the reason of this.Do you think aspirin is required if I have platelets in 600s.

August 27
A myMPNteam Member

Regarding headaches, they are a staple in MPNs, ET included, and the cause of them is the MPN itself. Hyperviscosity of the blood due to too many blood cells (e.g., platelets in ET, red blood cells in PV), hyperactive platelets that tend to clump fast and cause microthrombi, inflammation, these are some of the possible factors behind headaches in MPNs. The younger the MPN patients are, the more likely they are to experience headaches.
You have some good information on the page below:
https://www.mympnteam.com/resources/headaches-a...

Stress might aggravate headaches, but it is unlikely to be behind the persistent headaches that are a part of MPNs. Many people experience headaches as a symptom of MPNs that is often overlooked and this can lead to a delayed diagnosis.

"Headaches is common in patients with MPNs, particularly in younger patients. MPN-related headaches may be managed by using low-dose aspirin and controlling MPNs."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC97...

Headaches and MPNs: Causes and Treatment | myMPNteam
Headaches and MPNs: Causes and Treatment | myMPNteam
Clinical characteristics and management of headache in patients with myeloproliferative neoplasms
Clinical characteristics and management of headache in patients with myeloproliferative neoplasms
August 27
A myMPNteam Member

after I got over the craziness of knowing I have a chronic blood cancer ET with mutation of the jak27617F I now feel much better about it

September 1
A myMPNteam Member

I am OK with accepting this is a chronic blood cancer and that it has changed my life. My dad had an MPN, but he was not diagnosed when alive, and not knowing what illness he had was very hard for him mentally.

It took a while for me to accept the full meaning of having a chronic blood cancer, but with acceptance comes focus on resources and willingness to ask for help and allow myself to be vulnerable. It is not easy, but I am not alone and being chronically ill is nothing to be ashamed of.
Take as much time as you need to negotiate how you want to accept this illness in a way that allows you both to keep safe and follow treatment and illness management, and to keep a good mental health.

I like to keep up with research on MPNs, that is one way for me to cope.

August 28

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