Essential Thrombocytosis symptoms

Hi again nohrt4me,

I know you and I both are CALR positive, but did you get any other mutations listed on your genetic testing? I have two others that are concerning as percentage still in the 40s. My CALR is 49%. So you know exactly what this all means?

Hope you are enjoying your weekend.

Neither my GP or hematologists mentioned ET was a very rare blood cancer. Only found this out by googling it. I have had it for over 16 years, would have thought someone would have mentioned this fact. Neither has mentioned a mutation of JAG2 or CALR. I feel I have been left out in the dark maybe because it has been under control for all this time with Agralyn. Have prior to Christmas had my first bone marrow test to confirm ET. Now on a different path with Hydrae, this seems to be okay 1 tablet a day with 1 asprin. Just waiting for blood tests, was 1155 then 735 so it is going down. Only side affect is very tired, otherwise all good.

The test results I saw 8 years ago merely said "CALR with deletion." Tests with much more info may come thru your patient portal, so a sit-down with your doc is probably in order.

It's pretty customary for doctors to want to talk thru the tests after results come back. If your doc doesn't, you might want to request a consult.

Once the doc translates what it all means, a good question to ask is how often you will need blood monitoring. (Every 3-4 months is pretty typical.) Also how often you should be seen by hemo. (Twice a year is also typical, but I talked mine down to once a year with the proviso that I would be scrupulous about meds and bloodwork.) You might also ask what are some symptoms you should report to the doc.

Take care!

I'm on year 17 with ET.

When Dad was diagnosed, his doc told him nothing. When I got the official diagnosis 10 years ago, I got a bit more info.

Since then, researchers have learned more. Might be good to ask your doc you didn't realize you have a pretty rare chronic cancer, and what's new on the treatment front?

In my experience with specialists, they don't much volunteer info.

It is so sad that some Hemotolists / Oncologists have no respect for their patients . I kept seeing my platelets rise after having regular blood panels and finally I suggested I should be seen by a specialist . The worst Oncologist/Hematologist ever licensed . I had done my homework and after DNA Threading and numerous appts spread out over months , I had to also ask this if this was cancer , how rare it was and what Hydroxurea was . I knew I had to be my own advocate and after my Bone marrow Biopsy( my Oncologist never even called to check on me ) , it was obvious I needed a Dr that was a lot more empathetic and knowledgeable , so I researched my ET and am now seeing a wonderful Oncologist. I know I have to be on Hydyoxurea for the rest of my life ; my platelets are 620 and my new Dr is trying to get them down to 400. Strokes run in my family and This cancer is very very rare ( .01 % of the population has it ) . It is not genetic , but they are still doing research to see if it somehow has been linked to family members .
You have to be YOUR OWN ADVOCATE! . Do not be afraid to question Doctors , and change Dr’s if you don’t feel good about your medical care ! Your life depends on it ! Good luck

What is your diagnosis ? Diet is great , but you need to get to the root of the problem. Please seek advice from someone who specializes in blood disorders . Have blood work , genetic testing to rule out other cancers , and mutations , which could lead to other complications.

Neither my GP or hematologists mentioned ET was a very rare blood cancer. Only found this out by googling it. I have had it for over 16 years, would have thought someone would have mentioned this fact. Neither has mentioned a mutation of JAG2 or CALR. I feel I have been left out in the dark maybe because it has been under control for all this time with Agralyn. Have prior to Christmas had my first bone marrow test to confirm ET. Now on a different path with Hydrae, this seems to be okay 1 tablet a day with 1 asprin. Just waiting for blood tests, was 1155 then 735 so it is going down. Only side affect is very tired, otherwise all good.

Yes you do need to stand up for yourself. I have a great GP and now a great Haematologist. Both are concerned about my health. Just a pity it took my running out of tablets to set this in motion. Hope you are well, we can do this, wish my family took it seriously. My hubby is great, I think family don't say anything, in doing so, it doesn't really exist. You look healthy so you can't have a blood cancer. Sometimes I just want them to ask ARE YOU OK MUM. Just feeling a bit down that's all. Tomorrow is another day we all need this group l, keeps it real. ❤️

Yes you do need to stand up for yourself. I have a great GP and now a great Haematologist. Both are concerned about my health. Just a pity it took my running out of tablets to set this in motion. Hope you are well, we can do this, wish my family took it seriously. My hubby is great, I think family don't say anything, in doing so, it doesn't really exist. You look healthy so you can't have a blood cancer. Sometimes I just want them to ask ARE YOU OK MUM. Just feeling a bit down that's all. Tomorrow is another day we all need this group l, keeps it real. ❤️

Hello 1pearl,

In an effort to identify the cause of my platelet reduction, I have been considering various factors. The most plausible explanation I can discern is the alterations in my diet and lifestyle. I have adopted the Mediterranean diet lifestyle, which emphasizes the consumption of vegetables, fruits, and whole grains. Additionally, I have restricted my intake of red meats to once a week.

I have read numerous comments suggesting that it is not possible to lower platelet counts without medication. Therefore, I am uncertain how I have managed to reduce mine.

I wish you the best of luck in your journey.