Like to know more. Just told I have Triple Negative MPN.

Hi. That is what I have but I have not had my bone marrow test yet. I have not found a lot of written information on it, nor have I seen research projects on it.

Hi, @elouise999,
I will let you know whatever I find out. Hopefully, this forum will provide some useful information.

Cheers Lynne.

Thanks! I will let you know if I learn anything too.

Hi lynnebgraham,
Was that your first bone marrow biopsy or did you have them in the past? Why did you get your recent bone marrow biopsy? I know you were diagnosed with ET for 18 years.
I do not know much about triple negative but think it has to do with your not having JAK2, CALR, or MPL gene mutations. I think it can be tested by blood work or bone marrow biopsy.
I had CBC routine labs in December 2024 that found strange pattern in my platelets during that short window of time. On January 10, 2025 I was told by my first ever visit with an O/H that I had ET because my platelets were over one million. First time lab reported 1200(000). They went down to 844(000) with me taking nothing so I asked her why which the O/H did not appreciate me asking. Then I got a bone marrow biopsy and Molecular Genetics Testing which determined I have CALR mutation, but JAG2 negative and MPL negative. On February 10, 2025 same O/H sent me a message without me visiting her stating that I may have PMF which is worse than ET I read. I think yours has better prognosis as you have ET triple negative mutations and not PMF triple negative mutations.
Hopefully someone on this site can give us more information as both of us are confused and do not really know much about what we have.
Just try to stay positive and calm is my advice and what I am doing. I am blessed to feel just fine and have no symptoms. I could not get an appointment to see my O/H until April 4, 2025 so I am waiting for more information. Honestly, I wish I could get an appointment sooner and with an true MPN specialist but I doubt my Senior Advantage Plan with Kaiser really has any here in very Southern California. Hope you are feeling well too.

You must have so many questions! You might want to use the search bar at the top of this page to look for mentions of "triple negative ET" in the forum.

Below is what Google AI has to say:

Triple-negative essential thrombocythemia (ET) is a subtype of ET characterized by the absence of three common driver mutations:
JAK2 (Janus kinase 2) V617F, CALR (calreticulin) mutation, and MPL (MPL501L) mutation.
Prevalence:
Triple-negative ET is relatively rare, accounting for approximately 10-20% of ET cases.
Pathogenesis:
The exact cause of triple-negative ET is unknown. However, it is believed to be a clonal hematopoietic disorder, similar to other types of ET, but without the identifiable driver mutations.
Clinical Features:
Triple-negative ET patients typically present with:
Elevated platelet count, Often asymptomatic, and May have a lower risk of thrombosis compared to other ET subtypes.
Diagnosis:
The diagnosis of triple-negative ET is based on the following criteria:
Sustained platelet count above 450 x 10^9/L
Absence of JAK2, CALR, and MPL mutations
Exclusion of other hematological disorders
Prognosis:
Triple-negative ET is generally considered an indolent disease with a favorable prognosis. However, some patients may develop complications such as thrombosis or bleeding.
Treatment:
Treatment for triple-negative ET is typically individualized based on the patient's risk factors. Options may include:
Observation with regular monitoring
Low-dose aspirin to prevent thrombosis
Cytoreductive therapy (e.g., hydroxyurea) if there is an increased risk of thrombosis

Hi @janmc, Thankyou for the information. Really helpful. Yes really hard to get information when what you have is not the norm. Take care Lynne 🙂

Yes that was my first Bone Marrow test after having ET for 17 years. Only found out it was Tripple Negative because of this forum, I asked my haematologist and he told me. They dont offer much information, you have to know what answers to ask. All becomes a bit much sometimes. Yes I am also doing well so we are both lucky. Hopefully more information is forthcoming. Being 73 certainly has its challenges, but, one day at a time
Big hug, Lynne

Hi Lynne,
I guess I made a big mistake asking my O/H why my platelets were declining with no treatment as it would have been much better to be around for 17 years with just ET like you. (Sorry I was off by one year when I posted you had it 18 years). Without my asking that question I could have avoided having my bone marrow biopsy and not received her message that I might now have PMF instead. It is all very confusing and frustrating to me. At least I feel fine like I always have for which I am very thankful to God. I just stay positive and find diversions to focus my energy on each day rather than worry. Fortunately my daughter keeps me very busy with many other things we are constantly doing. We have a sweet cat named Pearl who keeps me calm too. Yes, your advice to take one day at a time is very good!

Sending you a big hug 🫂.

Hi, there is some information that @janemc put on here. Helpful