Essential Thrombocythemia: Looking for information and support

Posted by shenriq @shenriq, Jun 4, 2018

I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

ttown | @ttown | Jul 9, 2023

In reply to @eileen11108 "Hi Ginger, I am 79 diagnosed with ET JAK2. My hematologist gave me an information sheet..." + (show)

Eileen,
Thank you for your kind response and for sharing some great information. I have had no more mouth problems since my oncologist had me back off of the Hydroxyurea for 5 days, then started me back at 3 times a week. My platelets remain close to 500 and we have gradually increased the dosage to 4 times a week. The platelets started at slightly over 600. The only side effect I have had since the initial mouth sores last January, is now I have dizziness when I bend over sometimes, and also some numbness in my feet and legs. I go in two weeks to see my oncologist, so hopefully we can assess these two new problems....neither of which are extreme - just mild.

Loving this website - everyone is so kind,
Ginger

wa34937 | @wa34937 | Jul 9, 2023

ET CALR 3 yrs hydroxy, platelets have been like tennis balls, been over 1 mil a couple times. While the Dermatologist was excising a suspicious spot I queried whether hydroxy patients have a higher incidence of melanoma and was told no.

zinsam | @zinsam | Jul 10, 2023

I have had high platelets for three years now, anywhere between 479-530. They sent me to a hematologist recently for testing and they didn't find anything. No inflammation, infection, other disorders and my Iron, folate, and B12 are all within normal range. But my Jak 2 was also negative so they said they don't know what's wrong with me. I don't know what else to do now, but I don't want to keep feeling awful for no reason. Can platelets be high for no reason? Should they be looking for something else. My Dr. Said to wait because my numbers were too low.

esperanzam | @esperanzam | Jul 10, 2023

I have had Essential Thrombocythemia for over 8 years and been on Hydroxyurea (Hydrea) the whole time. Necessary to keep the platelets from creeping up, which they do every time have a steroid injection for other issues. So, no more Steroid injections, if another replacement 4 years ago and back surgery (L 4 Laminectomy and fusion) 2 years ago so I have been able to go through other things in life as long as we keep and eye on those platelets as well as red and white cells. It hasn' been easy but with the Lord's help and my sweet husband, we are doing okay. As for my age, I will be 73 in August. Yes, this is a great place to learn and encourage one another.

Colleen Young, Connect Director | @colleenyoung | Jul 10, 2023

In reply to @zinsam "I have had high platelets for three years now, anywhere between 479-530. They sent me to..." + (show)

Welcome @zinsam, I moved your message to this existing discussion about thrombocythemia so you can connect easily with other members.
- Essential Thrombocythemia: Looking for information and support: https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/

You might also be interested in this related discussion:
- JAK2 negative with high platelets https://connect.mayoclinic.org/discussion/jal2-negative-with-high-platelets/

shenriq | @shenriq | Jul 10, 2023

In reply to @nohrt4me "Kudos to you for being active! ET does not work the same in everyone, of course...." + (show)

@nohrt4me

Kudos to you for being active! ET does not work the same in everyone, of course. I was in the 5-600s for many years. Did what I wanted. Just took aspirin.

When the platelets started to rise toward 1,000, I got really tired, started forgetting things, cut my teaching load, and had to retire at 63.

The HU helped restore some energy and stabilize platelets in 400s with only one or two jumps into the low 500s in the past 5 years. Mentally, I am much more with it.

Diet and mild exercise/stress reduction also helped.

I'm 70. I helped my husband trim branches and haul them to the street from a fallen tree in our yard yesterday. I paced myself, and I will need to take a couple days to recuperate.

But, see how I fell into the trap of bragging about how I'm powering through my ET? How I let you set the standard with your three weeks of wilderness camping and I felt like I had to counter with something tough I did so people didn't think I was a malingering and self-indulgent wussy?

Sure, my problem entirely for falling into that trap, but the "we gotta be fighters and win our cancer battle" language encourages it. And it's tough for MPN patients because our cancers are chronic and none if us are going to "win" or ring the bell when treatment ends.

I also believe people have every right to treat their ET with raw honey, coconut oil, and dry vodka martinis if they want. But I don't believe that all the treatments people talk about on cancer sites are equally effective or should be viewed as equally good choices.

I dunno. ET support groups always seem to take this turn: Somebody says they have a doctor who says ET is not cancer and the rest of us start googling to see if we've been duped. Or that HU is going to give you skin cancer and rot your guts out, so we start googling side effects, even if we've felt better on the drug. Or that we can't venture a scientifically informed opinion about alternative treatments because it's not supportive.

Just hoping this expresses some common frustrations and concerns of other ET patients.

Jump to this post

Who can clarify whether or not ET is, or is not a blood cancer? I am perplexed by the reference to it not being a cancer. Somebody please educate me.
Thanks!

Lori, Volunteer Mentor | @loribmt | Jul 10, 2023

In reply to @shenriq "Who can clarify whether or not ET is, or is not a blood cancer? I am..." + (show)

Essential Thrombocythemia is one of a related group of blood cancers known as “myeloproliferative neoplasms” (MPNs) in which cells in the bone marrow that produce the blood cells develop and function. I’ve posted some links to credible medically sourced websites for you which explains MPNs and ET.

From Cleveland Clinic https://my.clevelandclinic.org/health/diseases/24031-essential-thrombocythemia
~Is essential thrombocythemia a form of cancer?
“Essential thrombocythemia is an example of a myeloproliferative neoplasm. These are blood cancers that happen when your body produces too many blood cells.”

~~
BloodCancer.com https://blood-What is Essential Thrombocythemia?
cancer.com/clinical/essential-thrombocythemia
~~~
Leukemia & Lymphoma Society
https://www.lls.org/myeloproliferative-neoplasms/essential-thrombocythemia

I know the word cancer sparks a unique level of fear. The MPNs are often very slow to develop and aren’t aggressive so sometimes it feels that the term cancer is over stated. However anytime we have issues with our bone marrow not producing healthy blood cells or producing them out of control, that is a blood cancer. Blood cancer affects how your body produces blood cells and how well those cells work.
So to answer your question from credible sources, yes, ET is a blood cancer. Does this help? ☺️

jola13 | @jola13 | Jul 11, 2023

In reply to @loribmt "Essential Thrombocythemia is one of a related group of blood cancers known as “myeloproliferative neoplasms” (MPNs)..." + (show)

Thank-you, Lori, now I’ll continue to write on this board, this info is in all the information booklets given when diagnosed. Plus when you research it’s there in black and white. I’m in the UK and have looked at papers from all over the world, and all say the same.

ger63 | @ger63 | Jul 11, 2023

In reply to @zinsam "I have had high platelets for three years now, anywhere between 479-530. They sent me to..." + (show)

In my opinion, I would find another heme/onc doctor to get to the bottom of the issue. Perhaps a bone marrow biopsy. Good luck

nohrt4me | @nohrt4me | Jul 11, 2023

In reply to @zinsam "I have had high platelets for three years now, anywhere between 479-530. They sent me to..." + (show)

Could you ask your doctor to test you for MPL or CALR mutations that would indicate ET ?

Possible that your doctor wants to see if elevated platelets are a longer term trend before doing a bone marrow biopsy, especially since you don't have JAK.

Not sure what you mean by feeling "awful," but possibly your symptoms aren't typical of ET or your hemo isn't aware of symptoms. My first hematologist was a good diagnostician, and I agreed with her treatment philosophy, but she insisted to the day that she retired that ET was always asymptomatic. After a couple of visits, just said I felt fine all the time because I didn't want to hear her tell me it was the menopause. Your GP might be better at helping you with symptoms. Mine was. Regular moderate exercise, cut-backs on starch and sugar, hydration, caffeine reduction helped with fatigue.

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