Blood Cancer - JAK2 - Autoimmune- Confusion
This is incredibly long…please forgive me for it. I'm just feeling very lost. I am 39, female.
Since at least 2016, I have had confusing symptoms that my doctor continued to send me to rheumatology for. The fourth rheumatologist told me in Feb. that he did not think my symptoms were related to an autoimmune issue. He recommended that I see a hematologist and that he personally felt it pointed more towards a blood disorder or blood cancer.
This was the first time this had ever been discussed as something other than autoimmune, even though I never had a definitive diagnosis.
I went to see a hematologist/oncologist. She seemed very dismissive. She said that I was simply too young to have a blood cancer, but that she would order all of the typical blood tests. The JAK2 genetic test came back positive. When she communicated the results, she said that because it came back positive, even though she thinks that it's too small of an amount to be important, she has to do her due diligence and do a bone marrow biopsy and aspiration, which will occur in just over a week.
When I talked to my doctor yesterday, she said that even if I were to have a blood cancer, she doesn't think it would cause the severity of symptoms I've been experiencing and wants me to go back to rheumatology, anyway.
I am tired and confused and feel like the people around me who are supposed to know more seem to know nothing at all, either. After scouring the research on blood cancer symptoms, as well as what the JAK2 mutation is, it does seem feasible to me that it could all fall under the blood cancer umbrella.
These are the symptoms I've been dealing with – rheumatology has ruled out R.A., which is what they've been throwing around to explain my blood tests for years.
– Enlarged spleen on scans in 2016, 2018, and confirmed again by hematologist/oncologist at this recent visit. Causes discomfort/fullness.
– High platelets since at least 2016, they've steadily increased over the years, and are around 600 K/UL currently.
– Elevated white blood count since at least 2016, typically slightly elevated CRP and sed rate is sometimes off.
– I cannot see what prior numbers are, but my last tests in Oct. and March show low MCH and MCHC – iron and ferritin are normal. My "Absolute Immature Granulocyte" value for those last two blood tests is .1 K/UL when the "standard range" is 0 – 0.03 K/UL (I'm having a hard time understanding what that means, so that's what it says.)
– I have had steadily worsening itching, redness/ heat all over my body, especially on my thighs, chest, and arms/hands. I MUST take zyrtec every day or it is unbearable.
– I have pain in both shoulders, knees, hips, and severely in my hands. My chest hurts on both sides above my breasts, regularly. I get pain in the pads on my hands and feet as well. There is visible swelling in my hands, especially. My left hand has undergone carpal tunnel surgery, and I have similar issues, still. Both hands are in various states of burning/tingling/numb…they hardly work at all (this is audio transcribed because typing is saved for work tasks.)
– I have been having severe dizzy spells that can last anywhere from a couple hours to a full day. I physically cannot walk, have a headache, feel sick, and it feels like an ocean is pushing on my head. When this first happened a couple years ago, I went to urgent care the next day, and they said I could have possibly had a mini-stroke, but it was really too late for them to really see or do anything, and I seemed fine then. After it started occurring more, my doctor put me on a blood pressure med, as it seems to correlate with severe blood pressure spikes.
– Nothing heals fast or at all…I have broken blood vessels in my eye that have been there for three months, now. Random purple spots on my stomach that are just there. If I get physically sick, I am very ill. I was hospitalized with pneumonia after a simple cold. Can't shake sinus infections, etc.
– I have difficulty regulating body temperature. I feel hot and flush, then I'm freezing, then I'm sweating.
– I have extreme fatigue. Sleep studies have shown no sleep issues, sleep apnea, etc.
– I was kicked in the stomach by my young son and wouldn't stop bleeding vaginally. I went to ER. They sent me home with no explanation, though this is where the 2018 enlarged spleen scan took place.
– Though the doctor has said there is no familial links, my brother had a pulmonary embolism on a morning jog in his 30s. My grandfather died of an unspecified blood cancer.
– My periods are weird…I spot for a week or more prior then have giant clots for a day or two.
– I bled profusely during intimacy a couple months ago and have been afraid to try again.
Anyone with a blood cancer weigh in on if these feel reasonable to them? Anyone with an autoimmune issue in addition?
What about the JAK2 and consistently high platelets? I am confused that the hematologist/oncologist still seems dismissive.
Thank you SO MUCH for your thoughts/ experiences.