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

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.

A good primary physician would refer you to a hematologist to follow up the rest of your life. This is a silent killer that is easy and simple to manage. If he didn't have you tested for the Jak2 mutation, I would get a new doctor. Read up on the Myeloproliferative Blood Disorders and get to know this condition so you can live a long normal life. Personally, I would not have lowered the dosage without testing for the Jak2 mutation and getting the platelet count under 400. My doctor saw me once a week until it was 400. 15 years later i'm seen twice a week for intravenous immune support and CBC every other week. I'm 70, don't look a day over 45. Out of nowhere my blood will become unstable where I'm admitted in the hospital until stabilized.

Your platelets are not especially high at 556. If and when you decide to take Hydroxyurea I would suggest you ask to start at a lower dose than two 500 mg a day.
My hematologist started me at one daily and then I went on one every other day.
Best wishes, Eileen

I was diagnosed with ET Jak2 in 2021, my platelets went over 1,000, with HU and baby aspirin, it is down in normal range. But wanted to ask the group, about Bone Pain. I had bone pain in my toes for 3 years before diagnosis. Since diagnosis I still have bone pain in my toes, but also in my shins. I don't have bone pain or joint pain any where else. Just wondering about your experience with this symptom??????

500mg twice a week ( every three days ) as per Doctor.
I will consider if I start to experience symptoms and my platlet count continues to rise.

Everyone seems to be posting about high platelets. Does anyone have an issue with low platelets? I would like to hear some feedback on low platelets.

Hi there
I have been on HU for 8 weeks now 500mg per day and the dose is being increased to 1000mg on a Sunday and 500mg Monday - Saturday. Blood test in 6 weeks and then seeing the consultant in December I still have fatigue, horrible headaches and off days where I can't do anything I just feel bleurgh! My platelets were in the 900's and are now 616 so not bad since July - we are aiming for below 400. I can't have my shoulder op until my levels are way down will let you all know whether I will feel any reaction to the dose increase. Also, my US results came back with the following pancreas normal, spleen normal, liver normal apart from a cyst I didn't know I had since 2021! but nothing to worry about. My left kidney has a angio myolipoma 4mm which will be checked every 6months - my house sale has fallen through after a complicated 1.5year wait but we have a new buyer we are just hoping and praying our sellers of our new property will wait a little longer - thankfully they have no chain - its probate, going to charity, so fingers crossed. I'm still smiling although there is lots of stress..

Essential Thrombocytosis is too many platelets (ET). There are other disorders that can cause a decrease in platelets. Immune thrombocytopenia (ITP) is one. Anemia is another. Medical terms can be very tricky. You might want to double check the name of the disorder you are researching.

Information on nattokinase from the National Institutes of Health. Sounds interesting, though maybe more useful for those with heart disease than blood cancers. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5372539/

Nattokinase has since been contraindicated for people with coagulation problems, which might include Acquired vonWillebrand Disease sometimes associated with ET. Nattokinase contraindicated for those with a history of deep vein thrombosis, also associated with ET, because it can loosen stroke-causing clots.

So still being tested for various ailments.

As sregiani notes, ask your doc, and don't self-administer.

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!