CALR exon 9 mutation w/translocation of chromosomes 10 &13

I'm 57 (58 in February 2026) and was diagnosed with essential thrombocythemia about six months ago, after genetic testing it turns out I have a genetic mutation CALR exon 9 with the translocation of chromosomes 10 &13 which is apparently unusual. Up until April of 2019 I have always had normal platelets, between 100 to 250, up to 2019 I'd have five spinal surgeries (last on in April 2019) along with a fall in 2017 where I broke 10 bones (left collarbone, seven ribs on left side, punctured lung and two bones in my left foot) and was hospitalized for 15 days...entire time normal platelets. About six weeks after my next to last back surgery I was kicked by my owner Reno (he's a paint gelding...horse) and broke my leg and had to have an ankle repair, again normal platelets. At the same time I was also in perimenopause, then COVID 19 hit, in 2021 I started not feeling well and had swelling in my neck which turned out to be my parathyroid which exploded my calcium numbers resulting in me having a parathyroidectomy in 2024 and during the procedure my calcium levels dropped instantly. At the same time my platelets started going up to the 600k however it wasn't noticed as it seemed it was connected to my hyperparathyroidism. In the fall of 2024 my left side started hurting and I had a backache I couldn't get rid of (after 30 years of back pain and five spinal surgeries I had a lot of experience) so I went to my primary who ordered regular blood work and an ultrasound of my abdomen specificallylooking at my kidneys for kidney stones (due to high calcium), the blood results came back in the 700k and I was referred to hematology oncology and more blood work was ordered along with genetic testing. The Ultrasound of my kidneys, liver and spleen all came back normal but the genetic testing showed this CALR exon 9 mutation with translocation of chromosomes 10 & 13. I did also have the bone marrow biopsy which confirmed everything but something strange happened: when they checked my clotting time that morning it was around 16.4 and when the person doing the biopsy called my oncologist they both said that was bizarre considering my ET diagnosis so the test was repeated two hours later and it was about 4....there was speculation that maybe the lab tested someone else's blood which meant maybe someone else might be in trouble but as far as I know there is no explanation of the clotting time discrepancy. The other fun thing was I highly sensitive to a number of opioids that would be used for mild sedation especially their drug of choice Fentynal so they ended up injecting lidocaine all around the biopsy site. The technician was only able to take a sample of my platelets and could NOT get a core biopsy. My current "treatment" is baby aspirin and iron due to me being anemic. For added fun my migraine and cervicogenic headaches have increase (under the care of two neurologists for both: emgality every month, amitriptyline every night and botox in my neck every three months) so I'm going to be starting magnesium this week. There's been some conversations about the cancer drug hydroxyurea but my oncologist is not wanting to start that immediately until absolutely necessary due to the potential long term effects and my age... too young. I also am trying to control my platelets with OTC, diet and lifestyle changes: control diet, water, exercise, etc.

I'm of the mindset that since this was caused by a genetic mutation (always knew I was a mutant 😉😆) I'm not stressing about it, I have decided to inform my half siblings (mother's side/father's side, minus one) and their kids just so they know it's something to pay attention too, I have no children of my own.

I find it interesting that I've always had normal platelets up to 2019, never had a problem with blood pressure, etc until after COVID 19. I did have four moderna COVID vaccines, and may have had mild COVID (even though I tested negative) when my boyfriend had COVID (we live together). I had severe back pain (my skin hurt) and it hurt to breathe almost like when I broke seven ribs and punctured a lung...lung spasms are HORRRRRRRIBLE!!! At the same time I was in perimenopause and then menopause and my thyroid and parathyroid were going crazy. My belief is that this CALR exon 9 mutation was "activated" (for lack of a better term) due to COVID or a combination of COVID/vaccines/menopause/hyperparathyroidism all due to the timing of everything.