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.

Lori, Volunteer Mentor | @loribmt | Jul 11, 2023

In reply to @jacquelineh "Thank you Lori. I’m in NZ and my specialists are insistent that this is not cancer...." + (show)

The big C word is frightening and it always conjures up the worst-case scenarios in our brain, doesn’t it? Seldom do we think of it in varying degrees. It’s like being ‘a little bit pregnant’. Well, you either are or you aren’t! LOL.

Do I have cancer or not? Well, from my understanding based on a great deal of research and just this morning my hematologist’s NP told me: “Myeloproliferative neoplasms or. myeloproliferative blood disordersare, in the blood cancer family. They’re just usually slow to develop and sometimes the news is sugarcoated so as not to strike fear in patients by giving it the moniker of Cancer…to avoid unnecessary anxiety.”

I know, even if it’s not something that may require treatment, it’s always lurking in the back of the mind…like waiting for that proverbial ‘other shoe to drop’.
The healthiest thing is to just assume that shoe isn’t going anywhere and get on with enjoy the rest of our lives. IF something happens, then we’ll take care of it at the time, otherwise we’re just wasting the precious time we do have. ☺️
Incidentally, I love the picture you posted of yourself in your first comment a couple months ago! Cute doggo…

How are you doing with the hydroxy?

jacquelineh | @jacquelineh | 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. I’m in NZ and my specialists are insistent that this is not cancer. When I pressed it, the answer was that it could be described as “pre-cancerous perhaps, but not cancer”. I’ve found this confusing due to many articles I’ve read.
I think for me, the word cancer is such a ‘big’ word that it feels important to define it fully in relation to my condition. But perhaps different countries and specialists have varying interpretations and understandings, so I will have to live in the ‘in-between’ lol.

nohrt4me (Jean) | @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.

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

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.

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? ☺️

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!

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/

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.

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.

View More View Less

Please sign in or register to post a reply.