Hi everyone. I’m a 45yr old female that was diagnosed with ET CALR Dec 19. At the time of diagnosis my platelets were 1800, so I was immediately put on Hydroxy & Asprin. For the last 14 weeks my platelets have been stable at 270 so the Hydroxy has done an amazing job for me, but my question is do I still need to be taking the asprin? Bruising on my body is awful & quite worrying but my haematologist says I need to still take (not an MPN specialist). I am sure I have read somewhere that CALR patients with no previous thrombotic events do not require?
Any help or advice would be greatly appreciated. Thank you.
Written by
CK79
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Aspirin would be pretty standard for your profile, but "standard" is not everyone. We are all different. Appropriate individualized care will be best provided by a MPN-Specialist. Regular hematologists do not have the KSAs to provide optimal care for MPNs, particularly if you have a more unique profile. Just in case you have not seen this, here is a link to MPN-experts mpnforum.com/list-hem./ . It is worth the time and effort to arrange a consult.
Meanwhile, I would check a couple of things.
1. Did the doc do a von WIllbrand panel?
2. What do your prothombin times look like (PTT/aPTT and INR)?
3. Are you taking any supplements or meds that potentiate the blood thinning of aspirin?
4. What is your current aspirin dose? is a lower dose appropriate? It is not all or none.
Hope you get answers soon. FYI - I am age 65 with PV. My MPN Specialist had me discontinue aspirin as risk for hemorrhage increases as we age. Indeed, I was experiencing excessive bleeding and bruising when on aspirin. This is NOT what most hemo-docs would do, but that is why it is a good ide to see a MPN Specialist.
Many thanks for your response, very much appreciated.
Since diagnosis I have had 7 different consultations with 7 different heamo's, so am struggling to build any type of relationship. I have no idea about my PTT/aPTT and INR, this has never even been mentioned, nor a von WIIIbrand panel? I think finding a specialist needs to a priority now. I am on a very lose dose asprin-only 75 & do not take any other meds.
Definitely find a single hematologist you can work with. Since most hematologists have little or no experience working with MPNs. you will only receive optimal MPN care if you consult with a MPN-Specialist.
All patients who receive MPN care (or any care) need to be assertive to ensure they receive high quality care. Passive patients do not receive high quality care. Whatever the reason for cycling through 7 haemo's, that is not acceptable care. Suggest two things - find a MPN-expert haemo to consult with, even if not your regular local provider. travel if you need to. It is worth it. If this haemo cannot be your regular provider, then pick a single local provider who you like and who is willing to consult with the MPN-expert. Any provider not willing to consult with a doctor with greater expertise is putting their own ego ahead of your care. That provider should be dismissed from your case.
It would be standard protocol for anyone with your MPN profile to have prothrombin times checked and a von Willebrand panel done. Sometimes they need to be repeated, especially when you are having excessive hemorrhage (bleeding/bruising). It may well be that these tests were preformed and the haemo did not bother to tell you the results. Suggest you request a copy of all of the labs that have been done or just log into your patient portal and look (if you have one).
It is very important t pay attention that thrombocytosis carries a twin risk of thrombosis and hemorrhage. Either or both can happen. You may just be particularly sensitive to aspirin or it may be something else (e.g. Acquired von WIllbrand Disease). What you really need is a MPN-Specialist to help you sort this out.
My name is Steve, from Sydney & the great Land Down Under...
I am also Post ET /MF CALR+ Type2, (there are a few Types of CALR), and knowing which one you have can also be most useful. However, most assays are really just generalisations, (in my view), and because we are all just a tad different in our body chemistry, it is vital that you see an MPN Specialists, if one is available of course... Good advice from Hunter there...
Exercise, and especially if it is intense, can also raise Platelet levels...
My Platelets are always stubbornly high, and still hover around the 800-900s, in my case...
I am almost always looking into various alternate methods of dealing w/ my higher Platelet regime... However, there is a danger here too... if Platelets are permitted to remain too high!
Everyone, it would seem is willing to place rather higher numbers upon what is a safe Platelet level, in their estimates... (?)
However, I have had Two (2) Transient Ischemic Attacks (TIAs – aka minor brain stroke), and at the time of the 2nd, my Platelets were around the million mark...
Hence, I am always working to stay below that magic marker, in my case...
As far as the Aspirin is concerned, I still am taking low dose 100mg daily of 'Enteric-coated Aspirin'. That coating is essential so do make sure that yours is also 'Enteric-coated', it helps to protect the stomach wall from the harshness of the Aspirin etc...
Many thanks for your response, much appreciated. I was not aware that there were different types of CALR, so I will look into this.
Do you mind me asking how long you had ET before progressing to Post ET/MF?
Stay safe Steve
Claire
Wow your platelets were high and brilliant you got them down and stable. My advise would be to get a second opinion re the bruising and aspirin and try and see a MPN specialist if possible. Please keep us posted as others may have similar issues and your experiences will be beneficial
Yes, hydroxy is working really well for me with minimal side effects-long may it continue. Although, obviously being diagnosed at a younger age & long term use of hydroxy is a concern to me.
I am going to most definitely look into a specialist.
Aspirin is an anti-platelet medication...take it!! The bruising may be a consequence of your ET, not the medication. I am a dreadful bruiser but its hardly a problem so long as I don't clot ....
I was 46 when diagnosed. Calr as well. 1300 when diagnosed now about 300. On asprin and initially Hydroxicarbomide but unlike u had really bad side affects. It affected my white and red blood cells. So now on anagralide and a lot better. I do bruise easily. I did ask about my asprin and was told stay on it as my platelets were so high at the beginning. Its another line of defence.
I am.aboit to have a hip replacement and the surgeon was not worried about asprin as 75mg is a low dose.
I am still taking baby aspirin with interferon, and I am 62, with ET/MPL 515L mutation, and seeing an MPN specialist. I would definitely encourage you to see an MPN specialist, as there is a treatment algorithm that is used to assign risk, and treat accordingly. Driver mutations (like CALR, MPL, JAK2) and their impact on treatment is addressed in the algorithm, as is age, cardiovascular risk factors, and history of thrombosis. In addition, because of your young age you might want to inquire about interferon, which is an immunotherapy, and generally safer over the long haul.
As they learn more about the nuances of these diseases, such as how mutations impact treatment and adverse events, it is even more critical to see an MPN specialist. These are complex diseases, and it is important to learn all you can, and have a doctor that you are comfortable with.
As previously noted, aspirin is not a blood thinner it is an anti-platelet drug, that keeps our platelets from sticking together to form a clot, it in effect "makes them slippery", which is different from anticoagulants or blood thiners like warfarin. Also, aspirin has critical anti-inflammatory properties, and MPN's apparently are very inflammatory diseases, as is heart disease.
I hope you can find an MPN specialist, it really makes a huge difference!
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Medication PV advice please
ET , newly diagnosed and have a couple of questions.
