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!

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wiggins32 | @wiggins32 | Dec 1, 2022

Hi Ginger. It sounds like you're going through some significant adjustments. I'm glad you have the courage and strength to finding solutions in care and feeling well again. I am curious what was the "aha" moment when docs decided to do the bone marrow biopsy? After 5 yrs of severe iron deficiency anemia, with so many life-altering symptoms that I had to retire, even though my plan was to work another 2 yrs (just turned 68). I've had a lot of tests, but still no diagnosis of any kind. I've implored my doctor to check my bone marrow, and nothing. Also, you mentioned about the numbness/tingling in leg and feet, and I totally relate to these symptoms. When my iron drops, I have these very things 24/7, but much more in the evenings and especially when I'm lying down...sleeping is sometimes a challenge. Just days ago, I was diagnosed with peripheral neuropathy in both feet, but worse on right side. I suppose they will do more tests. My hands and right wrist are this way, too. So much worse now after 5 yrs of IDA. Mine seems to be progressing to now neuropathy in my shoulders, especially right side. I am so frustrated that they won't test my bone marrow. Iron saturation % is always low (around 5). Oh, I have swollen tongue with small lesion on edge all the way around (but only when iron is low). Do you have any eye symptoms? Ugh. One of the most challenging symptoms when iron is low.

garyinmo | @garyinmo | Dec 1, 2022

In reply to @hariom1961 "My case even very similar. At 61 and asymptomatic, six months back platelets were 1150. With..." + (show)

I have to admit I am suspecting the same thing myself. I am in the same boat as you are, only just 53 years old and my platelet count was 1700. Healthy, exercise, eat very well. I also suspected being on multiple blood pressure medications starting in my 20's. Several in my family have that problem though, and no one else has developed ET. I'm told to not travel for work until the platelets drop below 1000. They are on the way down, but not there yet. I'm just a month into this taking Hydroxyurea and, cross my fingers, no side effects yet. The Hema. Dr. told me I can continue bicycling, but make sure I stay hydrated all the time. I'm afraid to go out alone in fear of being away from everyone and having a stroke, so I stick with the basement spinner bike now and weights.

nohrt4me | @nohrt4me | Nov 30, 2022

In reply to @ttown "Hi - My name is Ginger - I am 77 and was recently diagnosed with ET..." + (show)

I am really sorry you are having trouble with HU. Could you ask yr doc about anagrelide? Or Pegasus?

Some people just can't take the HU.

kimberlyrd | @kimberlyrd | Nov 30, 2022

In reply to @cajunqueen "Good morning everyone! I am a 50 year old female and went to get my annual..." + (show)

@cajunqueen

Good morning everyone! I am a 50 year old female and went to get my annual exam at my OBGYN. I have never been on any medications and I am fairly healthy but have been tired and less energetic for the past few years. When my blood work/panels came back, my platelets were around 779, so she sent me to my family doctor to re-test. After re-test a week later, my platelets increased to 810. My family doctor then referred me to my Hematologist and when she ran my CBC 3 days after my family doctor visit, my platelets increased to 847. She told me to begin taking an aspirin a day immediately because the high platelet count could possibly mean that my blood could clot too much and cause a stroke/heart attack. Being that it kept increasing within a few days, my Hematologist scheduled a bone marrow biopsy/aspiration on 9/20/22. The results from this came in on 9/30/22. I do have the Jak2 mutation and she diagnosed me with ET (Essential Thrombocythemia). She prescribed Hydroxyurea (500mg) daily with food and my 81mg of aspirin daily as well. When asked, she stated that this would be for the rest of my life because this medication will keep my platelets in normal range, if it does what it is suppose to do in my body. I started taking the Hydroxyurea this past Saturday at lunch (10/1/22) and so far, I have had no side affects. Praying this will be the case so that I can continue this plan of action. I have a blood work/panel scheduled for 10/20/22 with my Hematologist to make sure the Hydroxyurea is bringing my platelets down and doing what it is suppose to. If so, we will continue this regime. If not, she will adjust dosage and check again in 3 more weeks of the new dosage to make sure it is working and so on and so fourth. I will keep everyone updated as I find out what my body is doing in response to the Hydroxyurea. This has been the most shocking, anxious season in the waiting from test results and not knowing what is happening in my body! But, as I reflect back on this time, I know God has this and I have had a calmness at the same time in my gut that I would be ok and continue living my life with a positive outlook. No one wants to be on meds the rest of their lives, however, if this is what I need to do to prevent stroke/heart attack or some form of aggressive cancer, I will faithfully follow my doctors recommendations. ET is what I have, but it will not define who I am! I pray that this helps someone who may be going through this, or may have a friend or family member or know someone going through this.
Blessings,
Tifnie Queen (Cajunqueen)

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I am. 55 yr old woman who just got diagnosed a month ago , (physical)my platelets were over a million,hemacrates ,red and white cells very high too . Reading your story is how I feel . I put it in Gods hands . I could cry and think why me ,why is this happening….or I can go on LIVING. I am not quite sure about anything yet ,I see my hematologist once a month and go to the cancer center 2x a week for blood draws . I am not going to lie ,I am scared of all the uncertainties,but we will deal with it the best we can . I was put on HU 500 2x a day . All but my platelets have lowered ,they keep going the roller coaster up anddown . Yesterday they were quite high again ,waiting on hematologist to call . I don’t even know what to ask,this is all new and confusing.

Lori, Volunteer Mentor | @loribmt | Nov 30, 2022

In reply to @ttown "Hi - My name is Ginger - I am 77 and was recently diagnosed with ET..." + (show)

Hi Ginger and welcome to Mayo Connect. As you already found, this is a great forum to ‘connect’ with other members who are sharing the same experience of Thrombocythemia. It helps to know we’re not alone in our medical journeys.

I was able to spot your previous conversation for you. To help you in the future, all you need to do is click on the little avatar (the little oval with a picture to the left of your reply) or the little cartoon person in the upper right. Both will take you to your profile page where you can see all discussion, comments and reactions. Here is your original post.
https://connect.mayoclinic.org/comment/777821/
You received an answer from another member here…https://connect.mayoclinic.org/comment/777871/

Did you see this reply from @eileen11108 in regards to your sore mouth?

eileen11108 | @eileen11108 | Nov 30, 2022

In reply to @ttown "Hi - My name is Ginger - I am 77 and was recently diagnosed with ET..." + (show)

MOUTH SORES
Advice from Chemocare.com:

To help treat/prevent mouth sores…use a soft toothbrush, and rinse three times a day with 1/2 to 1 tsp of baking soda and/or 1/2 to 1 tsp of salt mixed with 8 ounces of water.

Eileen

eileen11108 | @eileen11108 | Nov 30, 2022

In reply to @ttown "Hi - My name is Ginger - I am 77 and was recently diagnosed with ET..." + (show)

The sheets given to me by my hematologist said
“To help/prevent mouth sores, use a soft toothbrush, and rinse mouth three times a day with 1/2 to 1 tsp of baking soda and/or 1/2 or 1 tsp of salt mixed with 8 ounces of water,”
Eileen

ttown | @ttown | Nov 30, 2022

Hi - My name is Ginger - I am 77 and was recently diagnosed with ET JAK2 in September of this year and have had the red feet and ankles. I also have red splotches (for lack of a better word) on the back of my left leg. These are not painful - just unsightly. I have a small level of numbness in both feet and in my left leg. These things are recent. My hematologist/oncologist prescribed hydroxyurea 500 mg daily. I had no side effects the first month. I had a bone marrow biopsy and it was confirmed that it was ET JAK2 . My platelets went from around 600 to normal within 10 days of starting the hydroxyurea. I was thinking all was great.....then the sores in and on my mouth appeared and my doctor took me off the hydroxyurea for a 5 day period and I am to start taking it again every other day. It has taken a toll on me - it was difficult to eat and swallow. I still continue with the low dose aspirin which I was already taking when I was first diagnosed. Now I am terrified to go back on a full dose of the hydroxyurea for fear of the mouth sores. This is all so new to me. Has anyone else had problems with sores in their mouth as a result of the hydroxyurea?

I wrote and posted this previously, but I must not have saved it properly because I cannot find it. This is such a great and informative place to learn so much about ET JAK2

nohrt4me | @nohrt4me | Nov 24, 2022

I take HU before bed, never with food. I feel full if I eat much more than a bowl of soup or a small plate at one sitting. I don't have the enlarged spleen many ET patients have, so not sure what that's about.

A plain cup of black decaf tea in the evening seems to help with bloat. So do some stretching exercises or a short walk.

I have cut back on starches and sugar and to eat four smaller meals. And yes to making sure you get you 64 oz of water.

We are retired and have no extended family, so the holidays are less overloaded with food than they used to be.

anno | @anno | Nov 23, 2022

I find taking a daily probiotic has helped a lot with wind and gut discomfort.

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