Calr deletion with normal platelets?: I have a... - MPN Voice

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Calr deletion with normal platelets?

MrMaxx
MrMaxx

I have a follow up appointment on nov 8 with hem/oncologist but I was able to read my blood test of my portal. WBC still elevated at 17.1 along with lymphocytes/monocytes. “Segs-bands high as well but I don’t understand what they are. MPL and JAK2 negative but CALR tested positive for deletion mutation. It seems every post I’ve read here and anywhere states that platelets are always an issue but mine are in the normal range at 350. Would being CALR with normal platelets still be an mpn diagnosis? Thanks for any help.

6 Replies

Hi MrMaxx

You may need further tests to confirm a diagnosis. With MPN’s blood cells can behave in different ways, in which sometimes a change in them can indicate the start in progression to something different. I’m no expert, and am still learning a lot about my own condition. But I’m pretty sure your Haematologist /oncologist will have some thoughts on the 8th. It may be that you require a bone marrow biopsy for a definitive answer.

I wish you all the best.

Paul

MrMaxx
MrMaxx in reply to SP-2008

Paul thank you for your response. He already had me do an ultrasound and some X-rays. The only reason I was in for a detailed blood test was because my surgeon that was to do my fusion won’t do anything until they figure my blood issue.

Thanks again,

Chris

I have no answers. Maybe more blood tests and monitoring is needed Good luck.

MrMaxx
MrMaxx in reply to Wyebird

Thank you for your reply. More tests and sit and wait. I’m going to have to take up a hobby to keep my mind off of it all.

Hey Mr Max... :-)

There are a few different types of CALR. However, the greater majority are usually either Type 1 or Type 2. Yet, there are also some circa 50 other types out there as well.

Actually, I am MF, CALR Type 2, which, (according to my own research), usually indicates issues with higher platelet counts. Mine have been seriously high almost from the outset, and stubbornly remain so. Last count was 852. And I have already experienced at least two TIA's (minor brain strokes).

Hence, in at least one sense, your specific CALR type might still need to be completely identified, and if I were you...

... I would also ask that my medical team clarify my condition further with a BMB and a panel of testing for other molecular mutations.

Again, in my own case, I have also tested positive for ASXL1. However, (and I believe largely due to my exercise/dietary regime), I have recently experienced a reversal down from Grade2 fibrosis to Grade1.

Stay positive Mr Max, and quiz those medicos every chance you get. Write your questions before attending your next consultation. I find that always assists me leave with a clearer idea of where things might be etc.

Best wishes

Steve

(Sydney

Thank you Steve. I live in Houston TX area and it’s crazy how expensive all these tests are. My oncologist did order X-rays and ultrasound along with my blood work so maybe he does suspect something. My biggest “pain” right now is having to wait for my spinal fusion. I don’t know if my lethargy is due to that or blood issue or both. I’ve never been one to be on all this medication but with statins, pain, cholesterol and nerve medication it all seems to be a jumbled mess. We shall see. Hey thanks again and have a great day.

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