1. < Blood Cancers & Disorders

Thrombocythemia and need neck surgery: Will surgery make it worse?

Posted by blondie65 @blondie65, Sep 1, 2023

I was recently diagnosed with Thyrombocythemia my platelets are over 900. The Dr. put me on a low dose aspirin. He said when it reaches over 1000 he will put me on a drug. I’m also having neck surgery on Oct 3rd on C4 thru C7. I’m scared, will the surgery make the Thrombocythemia worse?

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1995victoria | @1995victoria | Sep 15, 2023

Is pain in joint? my joint is ok, it's more in the "long" bone of the toe. as the pain in my shins.....not knee or ankle

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lynn22 | @lynn22 | Sep 15, 2023
In reply to @kapow "Thank you for this info. I didn’t realize that histamine levels were affected. I too have..." + (show)
@kapow

Thank you for this info. I didn’t realize that histamine levels were affected. I too have asthma, and find that I am out of breath more frequently than in the past. Maybe all related.

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Having suffered with asthma since 2 years old it went away in my 30s but now back with this ET, very annoying!

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arti4 | @arti4 | Sep 16, 2023

@1995victoria, @bonnieshaffer
As previously stated, I have ET, I’m 70 years old, and am just on low-dose aspirin twice a day, until my platelets rise to 600. I generally feel good, other than some fatigue, and I’m very active-walk daily, aerobics, etc. However, I have all kinds of bone pain! And yes, I wonder if it’s arthritis or caused by the ET. Some of it is chronic (toes, ankles) but some of it is fugitive. Like one day, I can barely walk, due to bone pain in my leg, and I’ll wake up the next day and it’s completely gone! No one has attributed this to the ET, but I wonder…

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1 reply
bonnieshaffer | @bonnieshaffer | Sep 16, 2023
In reply to @arti4 "@1995victoria, @bonnieshaffer As previously stated, I have ET, I’m 70 years old, and am just on..." + (show)
@arti4

@1995victoria, @bonnieshaffer
As previously stated, I have ET, I’m 70 years old, and am just on low-dose aspirin twice a day, until my platelets rise to 600. I generally feel good, other than some fatigue, and I’m very active-walk daily, aerobics, etc. However, I have all kinds of bone pain! And yes, I wonder if it’s arthritis or caused by the ET. Some of it is chronic (toes, ankles) but some of it is fugitive. Like one day, I can barely walk, due to bone pain in my leg, and I’ll wake up the next day and it’s completely gone! No one has attributed this to the ET, but I wonder…

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I have pain in my cartilage and bones as well as stiff muscles and soles of feet. I have terrible osteoarthritis along with other problems in my neck.

Most pain is in the morning (hands, feet and ribs) and then it tapers off.

My Endocrinologist suspects an autoimmune connective tissue disease. Apparently, ET causes inflammation which can lead to autoimmune problems.

I'm sorry about your pain. Just another unwelcome visitor!

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Pumpkin1 | @pumpkin1 | Sep 16, 2023
In reply to @sregiani "Hi Pumpkin1, Me, too, ET w/ JAK2. My primary sent me to a heme doc at..." + (show)
@sregiani

Hi Pumpkin1,

Me, too, ET w/ JAK2. My primary sent me to a heme doc at the beginning of the year when my platelet count kept creeping up. Within 2 months numbers went from 481 to to almost 580.

I’m 71, female, petite and otherwise quite healthy. So, the heme doc said let’s try 81 mg aspirin and the supplement Nattokinese. The second one is tricky, you have to take it away from food. I started w/one at night, then he increased me to twice/day. For me, that’s first thing in the morning and just before bedtime.

He said he’d prefer not to put me on the heavier drugs if they could be avoided. I’ve had no real issues w/the Nattokinese. I did look it up online, of course!

Several blood counts later and again last month confirmed numbers are holding in mid-400’s. Maybe it will work for you? Ask your doc before trying this on your own.

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Thank you, sregiani, for introducing me to this possibility. I will look in to Nattokinese. I am willing to try anything that is not a chemo drug, with my doctor’s approval. I know some people may feel i am risking it by not taking hydroxy, but each person is different, w their own unique circumstances. As long as my platelets stay below 600, I am happy. If they go above, I will reassess. Wishing you the best and hoping your platelets continue to hold in the mid-400s.

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lynn22 | @lynn22 | Sep 16, 2023
In reply to @bonnieshaffer "I have ET with the JAK2 mutation as well as MDS. I am taking 500mg of..." + (show)
@bonnieshaffer

I have ET with the JAK2 mutation as well as MDS.

I am taking 500mg of HU with baby aspirin as well.

The toes on my right foot are really aching! I don't know if it's the ET or arthritis!

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Sorry to hear you are suffering. My fingers are now aching and I don’t have arthritis so assuming it is the ET having read about small and large bone pain. Fortunately it is not present all the time but I am a therapist and have had to give up massage as too painful, very annoying!

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bonnieshaffer | @bonnieshaffer | Sep 17, 2023
In reply to @lynn22 "Sorry to hear you are suffering. My fingers are now aching and I don’t have arthritis..." + (show)
@lynn22

Sorry to hear you are suffering. My fingers are now aching and I don’t have arthritis so assuming it is the ET having read about small and large bone pain. Fortunately it is not present all the time but I am a therapist and have had to give up massage as too painful, very annoying!

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Oh I'm so sorry. I am a hat maker and have retired (I'm 62). This is mainly due to neck pain. I'm sorry you have to give up massage!

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jroyer | @jroyer | Sep 18, 2023

Regarding pain, I’ve been reading a lot about Red Light Therapy and how it stimulates blood cells and helps with all sorts of ailments. It could be snake oil (meaning fake) but I’ve listened to some doctors on podcasts claiming it’s real and sharing their results. I finally bought a light on Amazon for about $150 (they have larger lights covering larger areas for more money—I figure the smaller one is worth a try for me)—but I’m not actually experiencing any pain—my purpose is more cosmetic healing my hands peeling. I’ll report after I try four weeks of treatment with the light.

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1 reply
jroyer | @jroyer | Sep 18, 2023
In reply to @jroyer "Regarding pain, I’ve been reading a lot about Red Light Therapy and how it stimulates blood..." + (show)
@jroyer

Regarding pain, I’ve been reading a lot about Red Light Therapy and how it stimulates blood cells and helps with all sorts of ailments. It could be snake oil (meaning fake) but I’ve listened to some doctors on podcasts claiming it’s real and sharing their results. I finally bought a light on Amazon for about $150 (they have larger lights covering larger areas for more money—I figure the smaller one is worth a try for me)—but I’m not actually experiencing any pain—my purpose is more cosmetic healing my hands peeling. I’ll report after I try four weeks of treatment with the light.

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Red light therapy is promoted as helping arthritis fir humans and dogs—that’s where I first heard about it—at a dog show.

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1995victoria | @1995victoria | Sep 19, 2023

I don't think my bone pain is arthritis. I only have pain at night in bed, shin and 3 toes (big plus two). A friend suggest compression knee socks, I tried on one leg as a test, and it did feel better, but takes a long time to put on. So maybe blood circulation issue????

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