CALR+ eosinophilia

[yung_kokonut]

Greetings from Brooklyn, New York!

For the past 3+ years my CBCs have consistently shown significantly high eosinophils. In the first year, I received an "eosinophilia of undetermined significance diagnosis" after a slew of tests including BMB which was apparently normal at the time.

I now have a new doctor who is revisiting my case with new testing. I learned I am CALR+ (type yet TBD) a couple weeks ago. Last week I had an abdominal ultrasound and my spleen was slightly larger than normal. I had my BMB two days ago.

I don't have many strong symptoms related to ET or MF, but I do have night-sweats and shortness of breath on occasion, though I also have asthma.

I am a professional in higher education and have a doctorate, thus I am normally the type who values research-based information and data. So I've been reading a lot of articles about CALR+ and MPNs.

So far I haven't seen much about eosinophilia being a strong indicator of ET or MF on it's own. I am wondering if anyone else had such a profile and if so what was your diagnosis.

Many thanks and wishing all well. Whether or not I receive response on this thread, I will update later if I learn more.

[clubdino]

Hello. I have had ET CALR positive for about 18 years now. I'm not currently on any meds for it. A couple years ago my bloodwork started showing mild eosinophilia consistently. (Very mild) My doctor hasn't shown any concern and the little bit of research I did said that eosinophilia can happen with MPNs. I think eosinophilia can be seen with asthma too. I will be following this thread as I'm also interested in what ppl say.

[christiev]

My 26yr old son has CALR+PMF and has eosinophilia among other odd blood counts - never very extreme except initially (some years ago) v high platelets which have now mysteriously settled within almost normal range. He has an enlarged spleen too. Currently takes no medication and has few symptoms other than fatigue.

[yung_kokonut]

Hi clubdino and christiev, thank you for replying and sharing!

Clubdino, I did get my asthema ruled out as the cause of the eosinophilia through a breathing study, allergies, parasitic infection, cardiac issues ruled out, all that jazz.

Christiev, I am happy to see your son is doing well. That gives me some positivity as I wait for my diagnosis, since I do suspect based on my symptoms it could possibly be PMF

On another random note, does anyone know the name of the test they run on the bone marrow that shows fibrosis info?

Thanks again!

[clubdino in reply to yung_kokonut]

Hello again. There is no special test. When they look at the bone marrow sample under the microscope they will be able to determine if fibrosis is present or not.

[yung_kokonut in reply to clubdino]

Thank you club dino! I realize now it should be just the regular pathology report. I am still waiting to receive it.

[yung_kokonut]

here's my blog updates: mybloodmatters.blog/

no diagnosis 100% yet but looks like murky MPN territory.

[hunter5582]

Your question about the diagnosis got me to thinking and looking.

There are actually 7 types of MPNs (not counting MPN-Unclassified)

Polycythemia Vera (PV)

Essential Thrombocythemia (ET)

Primary Myelofibrosis (MF)

Chronic Myeloid Leukemia (CML)

Chronic Neutrophilic Leukemia (CNL)

Mastocytosis.

Chronic Eosinophilic Leukemia (CEL)

mympnteam.com/resources/typ...

med.upenn.edu/mpn/about.html

I found this article that you may find of interest. The Diagnostic Work-Up of Hypereosinophilia karger.com/Article/Fulltext...

It is perplexing that you have the CALR mutation with eosinophilia but no thrombocytosis. There are very rare cases of CALR causing polycythemia, but you also do not report erythrocytosis. A few articles like this show up on a search crossing eosinophilia with CALR. I am not sure they are very informative for your case. I would imagine the docs would have already discussed CEL with you if they thought it was evident.

ashpublications.org/blood/a...

nature.com/articles/modpath...

Your case does seem to be a murky form of MPN as you suggested. Hopefully you are already consulting with a MPN Specialist on this perplexing diagnosis. If not, it would be worth seeking this consultation. Here are two lists just in case.

mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...

Please do let us know how you get on and what you learn. We can all benefit from your experience and knowledge.

[yung_kokonut in reply to hunter5582]

Hi Hunter5582, I am so impressed and touched by your extra effort to help and respond to me. Yes I am seeing an MPN specialist at MSK here in NYC. So far though still no official diagnosis. You are dead-on with the CEL suggestion and my bone marrow biopsy compass report came back with that as the "favored" diagnosis amongst uncertainty. I have an appointment March 13 in which I think I will finally get a diagnosis. It seems there's always going to be an X factor or waiting for the other shoe to drop until it does, as the pulmonologist I recently saw said to me after reviewing my file. Yikes! I'm glad there are platforms like this to be able to feel less alone in this. Again I really appreciate it. The articles are really interesting and I hadn't seen them before. Wishing you all the best for now and I'll report back to let you know what's transpired.

[hunter5582]

I have been there and done that with multiple things piling on. I found out the ET had progressed to PV in 2018 after a surgery that did not go well. Between 2018 and 2020 I had four surgeries including heart (catheter ablation for atrial tachycardia) and brain (pilocytic astrocytoma tumor resection). I have had a share of other medical adventures (AKA unique medical learning opportunities) as well. This forum has been a great source of information and support. I am very glad to have found it.

Do please let us know how you get on. Your journey sounds like it will be amongst the rare cases among rare cases. What you learn can not only benefit yourself but those around you with similar issues.

All the best moving forward.