Essential Thrombocytosis symptoms

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.

So true ! The HU drug has relieved some of my side effects ( still have mouth sores and fatigue ) but now manageable . I see my Oncol/Hemo doctor Monday and hopefully the platelets have decreased . You’re right about people only noticing how well you look , but only you know your body . Strokes run in my family anyway , so I am not taking any chances . So far , no side effects from Hydroxurea , but I’m only on the lowest dose (500mg) . Good luck !

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
~~~
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?

Good points.

My guess is that many patients reject chemo treatment for chronic cancers out of fear, and that doctors don't take time to listen and explain. And that feeds some of the mistrust of "experts" that has exploded since COVID.

I would add that interferon based drugs like Besremi are also not chemo. But they are not frequently offered to U.S. patients because insurance coverage does not usually include them due to price. A few folks on here have been able to get it through grant programs.

Hopefully, clinicians will take note of patients doing well on these drugs and throw their weight behind making these drugs more affordable for more patients.

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.

Hi,
My only comment to that post is that ET does not have a cure and Hydrea is only having the side effect of lowering platelets. To me, that really is not worth taking unless you have big risk of thrombosis or bleeding. My O/H mentioned that Hydrea is not cure but just lowers platelets. Why are mine lowering themselves with no treatment meds is my question.
Thanks for listening and I wish everyone well on their own decision for their treatment for what they really know they have.

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?

I understand you don't want to take meds until you are satisfied you have been properly diagnosed.

I will say that, besides lowering clot risk, benefits of HU also include lowering the chances of spleen enlargement (Dad had this uncomfortable and disfiguring condition until he started meds) and keeping LDH within normal parameters, basically keeping your liver from getting overworked is how it was explained to me. My LDH was high until I started HU. I also felt less fatigue on HU.

No, HU won't cure ET or stop progression to MF or AML. But it may slow things down, especially if your diagnosis comes after age 50.

I feel that I was carefully and properly diagnosed 10 yrs ago. But I don't feel that I get much quality doc time or info. Oncology offices are full of acute cancer patients, and the medical system is set up to short-sheet chronic cancer patients like us because we are not on the verge of a crisis or death. For example, I waited 45 minutes in the exam room at my last visit because the oncology nurse was dealing with a kid with leukemia and her parents.

When I wandered out to the nurses station to make sure they hadn't forgotten me, there were five PAs returning phone calls or calling people with lab results and trying to sked appointments.

They were also short-handed because it was December and the hematologists were all at the ASH conference. (Note to self: Don't let them sked you for Dec appts.)

Also, COVID drove a lot of people out of health care in my area, and it exposed a lot of worker safety issues that have led to labor disputes.

Add to that the general stinginess of most health care insurance or advantage plans.

All that affects the care we get.

You can go to alternative medicine clinics where they have relaxing music, aromatherapy, and lots of sympathy. But the treatments are expensive and don't work.

So: I get that you are frustrated and angry and you want confirmation of your diagnosis with a bone marrow biopsy.

None of us, of course, is capable of getting into the weeds interpreting your test results or explaining a sudden drop in platelets without meds.

Only thing I can suggest is to you ask your GP to refer you for a second opinion. I sure wish I could help more.

Hi nohrt4me,
I do feel I was passed around as my primary doc never saw me and my diagnosis was based on a 48 hour maximum window of time with one visit and lab work one time.
A second opinion would be nice, but I think it would still be within Kaiser as that is the advantage plan I chose when I turned 65 recently. I am not sure that would help me.
You are right, having December appointments was a very bad decision.