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.

phyl59 | @phyl59 | Jul 13, 2023

In reply to @eileen11108 "I also have headache issues with Hydroxyurea. I am now only taking 500:mg on Mon/Wed/Fri. I..." + (show)

Eileen,
Is your hematologist from the Mayo Clinic?

I live in a small rural town and work for the local hospital. My oncologist said that the new standard low platelet count for ET is 600k. Anagrelide is a more potent drug than Hydrea. I know because I’ve been on both.

Injoy,
Phyllis

eileen11108 | @eileen11108 | Jul 13, 2023

In reply to @jacquelineh "Started Hydroxy on 22d May. Seems like the more my platelet count comes down, the worse..." + (show)

I also have headache issues with Hydroxyurea. I am now only taking 500:mg on Mon/Wed/Fri. I still have headaches but usually just mild. My platelets are down to 509 but my hematologist wants to get them lower. Some talk about Anagrelide. My next lab is in six weeks.

Best wishes, Eileen

sregiani | @sregiani | Jul 12, 2023

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

According to my Heme doc, not all ETs are cancer. I have Jak2, which is not cancer and unlikely to become so. Best to ask your doc for more insight and perhaps more testing.

Lori, Volunteer Mentor | @loribmt | Jul 12, 2023

In reply to @jacquelineh "Started Hydroxy on 22d May. Seems like the more my platelet count comes down, the worse..." + (show)

Hi @jacqueline, I hope you’re finding out that you’re never alone now that you’re joined our Connect group! We’re like a big ol family sitting around the table drinking coffee, tea…and I’m sure we’re snaking on healthy foods. 😂

I’ve found a couple of conversations in the forum with other members who take hydroxuryea. They are not all ET patients as hydroxy is used across several blood disorders. But some of the members have side effects including headaches.

Here are a few discussions for you to pursue.
How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? With members @dancouclanel4 @koryw208 @gmacookie @lefsequeen and others…
https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
~~~~
This discussion with @dale1k @nypara66
@1995victoria robert3861 (who both have ET)
Hydroxyurea side effects lessen over time?
https://connect.mayoclinic.org/discussion/hydroxyurea-side-effects-lessen-over-time/
One thing that has worked for other members is to speak with their doctors about perhaps lowering the dosage. Have you told your doctor about your recurrent headaches?

jacquelineh | @jacquelineh | Jul 12, 2023

Started Hydroxy on 22d May. Seems like the more my platelet count comes down, the worse the Hydroxy symptoms get … mainly headaches really …which I already had before treatment but they initially eased on Hydroxy. Brain fog comes and goes.
I appreciate your interest. Easy to feel lonely in this, down under.

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 | @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.

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