Essential Thrombocytosis symptoms

Hi @1pearl, I’m putting together pieces of your ET puzzle. When we first spoke the other day, you mentioned not having the JAK2 mutation and the mystery as to why you have elevated platelets. Reading through your response to another member this morning, I see that you have the CALR mutation. That’s the missing piece of the jigsaw puzzle that fell through the cracks in our discussion.

The CALR mutation is also one of the potential causes for development of a myeloproliferative neoplasm (MPN) such as ET, PV, MF.

MPNs are a type of chronic cancer of the bone marrow that can worsen over time, especially if left untreated. They happen when immature blood stem cells, called blast cells, develop sudden genetic changes that cause them to grow abnormally and out of control. In the case of ET it is platelets. MPNs can also lead to complications like scarring of the bone marrow in MF or myelofibrosis which eventually interfere with production of healthy blood cells causing severe anemia and low numbers of platelets.

Some of the more common genes involved in the mutations known to cause MPNs is Janus kinase 2 (JAK2). However, other gene mutations, called MPL and CALR are also culprits.

A quote from an article in the National Institute of Health/PubMed
“Calreticulin (CALR) mutations have recently been reported in 70–84% of JAK2V617F-negative myeloproliferative neoplasms (MPN), and this detection has become necessary to improve the diagnosis of MPN.”

Link to article: Calreticulin Mutations in Myeloproliferative Neoplasms: Comparison of Three Diagnostic Methods https://pmc.ncbi.nlm.nih.gov/articles/PMC4621046/

Every second, our marrow produces several million blood cells. Daily, that translates into around 200 billion red blood cells, 400 billion platelets, and 10 billion white blood cells. Each cell is a precise copy of each other! If there is even one teeny deviation to a strand of DNA it can alter the course of events. Our immune systems do an amazing job of sniffing out defective cells and eliminating them. However, if the cells elude detection they can proliferate out of control, eventually crowding out the healthy cells. So keeping them under control can be vital to continued good health.

A little reading material… (There are many reputable sources online regarding MPNs or specifically Essential or Primary Thrombocythemia)
https://www.healthline.com/health/cancer/myeloproliferative-disorders
So, for what it’s worth, there’s the missing piece. The CALR mutation. Hopefully this is helpful in clearing up part of your mystery.
Have you considered a 2nd opinion?

Hi @lyno29, You posted: “I’m choosing not to do chemo, even though my doctor recommends it. It is my understanding that the cause is unknown and unrelated to my family medical history, rather something triggered in my body. I’m choosing dignity.”
While some drugs for treating myeloproliferative neoplasms such as ET, PV and MF are technically classified as chemotherapy they are not in the same class of meds used to treat aggressive cancers. Anagrelide, used to reduce platelet levels in ET isn’t classified as a chemotherapy drug.

You’re opting to used a homeopathic route to treat the ET with arnica. If you have a acquired mutated gene such as JAK2 and it’s the driver behind your ET, taking arnica, while thinning your blood, will not prevent this condition from progressing and it won’t be a cure. That’s treating the symptoms not the underlying condition. There is also a risk of ET progressing to other more serious conditions such as myelofibrosis which is scarring of the bone marrow or acute myeloid leukemia. Your doctor is using their knowledge, educational background and experience to help you avoid more serious complications.

Arnica can also be a potentially dangerous supplement when taken orally.
https://health.clevelandclinic.org/arnica
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Here’s a good article to read through about ET, diagnosis and treatment
https://www.verywellhealth.com/essential-thrombocythemia-2860907
I don’t think of having chemo as losing dignity. I had several rounds of very aggressive chemo 6 years ago and while there were a few months I wouldn’t have won a beauty queen contest, I never lost my dignity. And now I’m cancer free and living a full and active life at 71.

There are millions of people who are alive because of chemo. For some, it’s a deeply personal decision whether or not to go forward with treatment. For people at the end stage of cancer, where there is nothing more to be done, they may opt not to proceed and that is a matter of passing with dignity.

I also respect your decision to not take the medication offered by your hematologist. However, I felt I needed to defend anyone who has made the choice to proceed with chemotherapy or medications their doctor’s have prescribed. It isn’t a matter of losing dignity. It is a matter of choosing hope.

Do you recall on your labs if you have a mutated gene such as Jak2 MPL or CALR that is associated with your diagnosis?

Hi lynne gragham,
Yes, I think docs just want us to take what they prescribe for what they think we have. I just cannot do that. I really need to know what I really have! Being an optometrist and able to think for myself, I question their decisions, especially if they have never seen me in person or are are going on one lab test. I still have not met by primary doctor and changed to a new one after four cancellations from the one I first selected! I have seen an oncologist/hematologist as I was directed there. I actually requested to have a bone marrow biopsy to see what I really have and did it four days ago. It takes a while for results, so I do not know the results, only that I have just CALR mutation per blood work. It is confusing to me to have a blood test one month later that shows my platelets dropped by 411 on their own by my doing nothing differently. I have not filled nor taken Hydrea prescribed for me twice per day, 500 mg from my initial blood test. I have not taken one baby aspirin once per day as O/H actually advised me against taking baby aspirin after primary doctor who never ever saw me had her medical assistant call to tell me to take it. I really question the medical system as a whole now, especially after COVID and so much reliance on AI and target numbers based upon templates. PPO prior that I had prior and now senior advantage plan I have now both seem somewhat incompetent.
Thank for listening to my concerns.

Sorry so many typos! I will get better about my proofreading before posting in the future.

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Hi @1pearl, yes Covid was definitely an eye opener. Why would we trust the medical system again, after pushing us into injections, we now know where not properly tested. I have had diabetes since I was 50, 24 years ago, so have had blood tests every 3 months. Have had MPN ET for over 16 years. Previously on Agralyn for that time. One aspirin a day since diagnosed with diabetes. Genetic in my case. I am on tablets, both brothers on insulin. I never questioned my 1st haematologist as everything was under control. A number of things happened at the same time, haematologist disappeared, couldn't get Agralyn from hospital, ran out of tablets, all just days before Christmas. Saw another Dr at clinic, he couldn't understand why I had never had a Marrow test done in 16 years. We trust our medical professionals to know what they are doing. So good to have this forum. On Hydrae 1 x500mg with 1 asprin per day. More blood tests in 2 weeks. Taking a while for platelets to go down this time. After not being on tablets for 2 weeks my platelets went through the roof. Hydrae seems to be settling them down. Happy for you that you seem to be controlling your levels, without medication. Please be cautious though, as an aspirin helps with stopping blood clots, which can cause strokes.
Thanks for listening, take care Lynne 🙂

Hi @1pearl,
Wow I am so impressed with your exercise regime. When I was on Agralyn, I seemed to have more energy and would exercise every second day, doing gardening on the other days. Now, I can't be bothered. I know it is up to me to get of my but and do something, you give me some hope that I can do that. Will start today with a walk down to the bridge and back. Haven't done that in years. Live out of town and my only friend is my neighbor next door, who is 83. I am 73. Hubby is a recluse and doesn't want to go for walks. My mum was 93 when she passed and I remember saying to her move it or loose it, should take my own advice. My GP really scared me when he rang up after I had blood tests done in the morning, and said my platelets were extremely high and he was worried about having a stroke. I wasnt on tablets for 2 weeks at that time. I had to take 6 asprin and 2 hydrae for 2 weeks, before my levels went below 400. So I will always take 1 asprin per day. That was just befoe Christmas, bad time of the year to have issues. Hopefully when I see Haematologist in 2 weeks they will be back to normal. Took nearly 3 weeks to get all results when I had my bone marrow test. Think positive, all will work out.
Keep up the good work, cheers Lynne.

I had a great cardiologist who was really encouraging about even a little exercise. The new one is ok, but not a "people person." I will also say that my husband's heart attack motivated him to join Silver Sneakers, go to the gym regularly, and eat better. His heart has completely recovered and his A1C numbers are normal (he had been "prediabetic). So enjoy your walk to the bridge! It's 21F here in Michigan this morning, so I will enjoy my indoor bike ride while I watch the bird feeder.