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CALR exon 9 mutation w/translocation of chromosomes 10 &13
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (25)Comment receiving replies
Good morning kids and hope you all had a Merry Christmas!
So a small update: As I'd indicated before my headaches had increased especially in the morning and when I contacted my neurology nurse she recommended I start taking magnesium, I also contacted my oncology nurse and she was intrigued by the idea especially since magnesium also decreases platelet counts so I started with 250mg. My headaches did decrease intensity however they were still there, my neurology nurse suggested I take 500mg originally but I started at 250 for two weeks. A week ago I increased to 500mg and not only have my morning headaches decreased I'm also sleeping better. My oncology nurse ordered more bloodwork to check my platelets after a few weeks of being on magnesium and I'll be getting the bloodwork done in about a month (due to the initial start at 250mg and then increasing to 500mg).
I see a lot of you on the hydroxyurea even though you're under 60 years of age and even under 50 with platelets at 600k, my hematology oncologist (the first one and now the second) did not want me to go on hydroxyurea due to my age, at 57 they both said I was "too young". My last platelets were in the 700k.
I'm hoping the magnesium is helping lower my platelets and for now I am feeling really good especially first thing in the morning with a decrease in headaches. My BP is still high which still blows my mind as I've never had a problem with my blood pressure until the last years when I started having issues with my parathyroid, etc.
(Now if I could get rid of my annoying static tinnitus!!)
Hoping 2026 brings us all better health!!
Replies to "Good morning kids and hope you all had a Merry Christmas! So a small update: As..."
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Hi @daelitesmom,
I prefer to decline Hydrea as well and have never taken it. I take daily low dose aspirin as I do have high platelets, but I cut back when I had surgery on my Melanoma insitu the dermatologist found recently on my facial cheek on December 4 and then had more removed December 19. That second procedure had good result which came back clear of any cancer cells thankfully. I have CALR1 mutation. Please let me know what you find out about your platelet level after more magnesium. I just take a daily multiple vitamin which I assume has a small amount of magnesium. No one ever suggested magnesium to me. Did you have lab work first for magnesium level that found it low? My O/H did lots of blood work on me but no vitamin level checks on me. I am changing to a new insurance January 1 as I am not happy with what I chose at 65. They diagnosed me January 2O25 with MPN but changed which one February 2025 when I asked how they knew and they did bone marrow biopsy. I have no symptoms still and feel fine. My pelvic CT scan they ordered showed my spleen size normal. My BP is normal daily as my current primary doc has me take it each morning, but my systolic BP spikes at doctor appointments. After my terrible choice for a first primary doc who canceled four appointments with me and never saw me but prescribed hypertensive meds for me without ever seeing me, I found this different decent primary doc who diagnosed me with White Coat syndrome. I hope I made a good choice for my new primary doc with the new insurance I chose for 2026. I would just like to start over and hope they address my nonpainful right ring finger very large proximal phalangeal joint which was my chief complaint when I started with my former insurance. I figure no insurance plan could worse that what I chose formerly. I guess they were decent in the sense they ordered tons of tests on my that were covered and not out of pocket. They just did not listen to what my chief complaint was and found other things to focus on.
Thanks for reading my complaints.
Wishing you and all others in this group as the best in 2026!