Blood Cancer - JAK2 - Autoimmune- Confusion

Dear PinkFlamingo,

Wow!! Sorry for what you are going through. I had the JAK2 blood work done because I kept having platelets in the 600 level. I was not feeling sick, but I knew with that level, something was not right. My very astute nurse practitioner was the person to look into this and request the JAK2 test. Bam! She found the culprit and immediately sent me to an Oncologist/Hematologist who agreed with her findings. He put me on Hydroxyurea and a low dose aspirin, to offset the possibility of blood clots and stokes, and ordered a bone marrow test two weeks later, which confirmed Essential Thrombocythemia. Since being on the medication, and by the time I had the bone marrow test, my platelet count went down to the normal range. Unfortunately I had a reaction of getting multiple mouth sores, both fever blisters on my lips, and canker sores within my mouth. The Hematologist took me off the Hydroxyurea for 5 days, then started me back at 4 times a week. That has worked beautifully for me. My understanding of blood cancers is that it is an incredibly frustrating situation to find the balance and proper control. I fervently hope you continue to pursue this avenue you are on, and eventually gain that balance. It sounds as if you definitely have additional issues and like you, I had felt so dismissed by my Primary care physician....because of my age (77) - he said it was an age issue. That nurse practitioner was my saving grace. She investigated multiple things and ordered multiple blood tests, and after ordering the JAK2 test, we finally got the answer. I am feeling much better since that time during this past fall. I am new to this diagnosis and I am so thankful for the nurse practitioner and her interest in finding an answer. I go to her almost exclusively now, except for the required 1 time a year required by Medicare, when I see my Primary Care Physician. I am saying all this to encourage you to continue your pursuit of finding answers. It took me two years. Praying for all your questions and issues to be resolved.

Ginger

Dear @pinkflamingo, so sorry you are going through all of this. The only thing I can tell you is to find an MPN specialist. I was not happy with the dismissive nature of my first hematologist and was able to find an MPN specialist in a nearby city. He made all the difference in the world for me. Good luck and blessings!

Those of us with the JAK2 mutation, who have also been diagnosed with a blood disorder or cancer, understand that even oncologists/hematologists are not always familiar with rare disorders/cancers and specialized second opinions are highly recommended.
Know that we are all here to support you, @pink flamingo.

Ive just been diagnosed with the JK2 gene mutation a few months ago. I'm 75 . I'm a retired nursing Director of Trauma, very aware. always have kept up with the medical information. I noticed a few years ago that my red cell, hematocrit, hemoglobin and platelets kept creeping up. My family Doctor regular response was dehydration. After a TIA and emergency visit, I had the gold standard check up, they found nothing. But I noticed on CBC that the hemoglobin/hematocrit and platlets were now pass the normal range. I decided enough and to make an appointment with a hematologist. He came in the room, sat down and said you don't have leukemia..I was stunned for two reasons, the blood work doesn't support leukemia and I was expecting nothing major was at work.. It was a surreal moment and I hardly heard what he said next. (my husband was with me) He said you have polycythemia Vera.. I had never heard of PV and after reading found it to be very rare..The blood testing came back positive for JK2..This doctor is very kind and I like him personally however, when I ask questions he uses words like transformative etc that throw me off. When I called him on it he said "I prefer using words like this rather than scare the pt. I asked him not to do it with me however he still does. So, I'm also a pt at MDAnderson downtown Houston for followup as I have a history of breast and bowel cancer.(all good) Ive requested a second opinion and will stay there where my treatment in the past has been phenomenal. I live in Houston, Texas and MDAnderson is close. You sound like you're in a quagmire with no way out; a couple of questions to think about, 1. where are you getting medical care? you're positive for Jk2 so you have it and sounds like not getting treatment, it needs to be managed or a good reason for not. It's very rare and most Dr.s have never had a pt with the PV diagnosis..I have a lawyer friend who was diagnosed with JK2 is her 30's and has it managed now into her 70's..I'm suggesting you go to a large well known institution like Mayo, MDAnderson etc. where they have specialist who deal with PV specifically...This seems to be effecting your everyday life and while you struggle....you seem to feel you're not being managed..2) There may be more than one diagnosis. I'm not a doctor and can't diagnose however my experience is PV is considered a blood cancer and needs to be managed and can be for many years...Consider going to a large, academic institution and settle this once and for all. you found your way to this site, excellent ..I'm not saying your current doctors are right or wrong , I'm saying you are concerned and this needs to be put to rest.

Thank you for your response, Jackie! I am in NH, but my insurance currently won't cover the bigger Boston hospital systems...I'll keep pushing.

Hi Pink Flamingo,
I call this "the scary club". Friends laugh at this and laughter is good - even though no one understands. My journey started out with vision problems a year ago, had cataract surgery and thought the surgeon was not as sharp (pun intended) as promoted. I've worn contacts most of my life, but lately it's been blurry vision to the point where night driving is hard. Totally hard, blurry, as if there is water on the road. Computer screen? I am constantly increasing the size of font.
Then there were the headaches, mild, and explainable. There has been a lot of stress over the past few months - a year really. Of course that made sense.
Call us "lucky". Neither of us have stroked out. Yea, not funny, but a good number do not learn they are JAK2 w/ET until either a stroke or routine bloodwork.
Have you tried this site? MPN Research Foundation
Lots of good info. Register and they'll send you clear explanations in a nice reference booklet.
Do an ONLINE SEARCH to find a different Hematologist. I like mine - he is taking it one step at a time, and he takes the time to explain everything to me. Keep looking - the good ones are out there. You might be able to find one who does virtual appointments.
Geez... I wish we could all get together for coffee or wine! Sometimes you just need a hug. Or a nap.
Best wishes,
Sherry