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adleaded

Essential Thrombocythemia

Posted by @adleaded in Cancer, Aug 15, 2011

Just recently been diagnosed with this disorder and would like to hear from others as to how they treat it or where the best place to get a second opinion.

Tags: Cancer

starchaser1, jessicasue1988, Tessa and 1 others like this
sharonosborne

Posted by @sharonosborne, Aug 22, 2011

I would like 2 know if this is in the leukmia family.

vick likes this
sueg444

Posted by @sueg444, Nov 9, 2011

Yes it is. My docter said that is what comes next but she said that mine hasnt turned into leukemia yet

tessa

Posted by @tessa, Nov 12, 2011

This is what I learned after being seen at Mayo this summer for essential thrombocythemia ET. It is NOT cancer, although in many ways it is similar and yes it is treated with chemo therapeutic drugs such as hydrea. It is not in the leukemia family although it has a habit of turning into leukemia. The longer you have ET the more likely it is to turn into leukemia. It is a disorder of the platelets where leukemia is a white blood cell disorder.

tessa

Posted by @tessa, Nov 12, 2011

This is what I learned after being seen at Mayo this summer for essential thrombocythemia ET. It is NOT cancer, although in many ways it is similar and yes it is treated with chemo therapeutic drugs such as hydrea. It is not in the leukemia family although it has a habit of turning into leukemia. The longer you have ET the more likely it is to turn into leukemia. It is a disorder of the platelets where leukemia is a white blood cell disorder.

adleaded

Posted by @adleaded, Aug 22, 2011

It is my understanding it is a blood cancer of sorts and can turn into leukemia but doesn't always. Have you been disgnosed with this one of these conditions?

connieg2002

Posted by @connieg2002, Aug 30, 2011

I was diagnosed in Feb, according to my hematologist it could turn into leukemia BUT she said she has never seen a case of it. SO Im hoping it never happens.

tessa

Posted by @tessa, Nov 12, 2011

I agree I have ET too and I REALLY hope it never become leukemia.

tessa

Posted by @tessa, Nov 12, 2011

This is what I learned after being seen at Mayo this summer for essential thrombocythemia ET. It is NOT cancer, although in many ways it is similar and yes it is treated with chemo therapeutic drugs such as hydrea. It is not in the leukemia family although it has a habit of turning into leukemia. The longer you have ET the more likely it is to turn into leukemia. It is a disorder of the platelets where leukemia is a white blood cell disorder.

connieg2002

Posted by @connieg2002, Aug 30, 2011

I was diagnosed in Feb, and take 2mg a day of angrelide. Platelets fluctuate alot between 540 and 700. (thousand) Havent had any side effects from meds.

joanhobbs

Posted by @joanhobbs, Sep 4, 2011

My 31 year old son was diagnosed last week. He was started on Hydroxyurea last week as well. He has taken this medicine for 5 days now. His platelets have been consistently in the 500 thousands after a major clotting episode last year. That was how we knew something was amiss. He also has the JAK2 gene mutation. I am a RN, but have as many questions as anyone. I am trying to read as much as I can. I believe if we wanted a second opinion, I would go to Mayo. It seems that they are doing a lot of research on this neoplasm. We go back to his hemotologist on Tuesday, and we hope to get more answers to more questions.

tessa

Posted by @tessa, Nov 12, 2011

Go to mayo clinic, I was there this summer and had a great experience. I too have ET and they were amazing, very knowledgeable able to answer all my questions

joanhobbs

Posted by @joanhobbs, Sep 4, 2011

I have read that this is a called a chronic leukemia as it is a neoplasm of the bone marrow.

joanhobbs

Posted by @joanhobbs, Sep 4, 2011

I have read that this is a called a chronic leukemia as it is a neoplasm of the bone marrow.

adleaded

Posted by @adleaded, Sep 16, 2011

I am taking 2 mg of Angrelide daily for several months and seems it takes my platlett count down about 200 (thousand) every 2 weeks. Started at 999 and am at 562 now. Hopeful that when it gets down to normal I can get off the meds. Don't know how it comes back. Will have to wait and see. Its so hard to get all my questions answered by the my Hemotologist. I also have a 45000 white count and no one can come up with why. Its all blamed on Myleoprolifitive Syndrome. I need to see if others have this problem. The Mayo Clinic and M D Anderson are both active on this condition. I have been trying to find everything I can about it but info is very limited or I don't have the right sites. Lets keep in touch and share what we can find out and our experiences. I do have a few minor inconveniences taking these drugs. But nothing too major.

tessa

Posted by @tessa, Nov 12, 2011

Have you been to Mayo clinic? If not I might suggest you go there.
From what I understand is that treatments such as Angrelide are life long, that if you stop taking them the counts will simply go up. I would be concerned with the white blood count being high simply because I know that ET has a habit of turning into leukemia.

strongenough2011

Posted by @strongenough2011, Sep 19, 2011

Can I ask you what this means? And how high or low are your blood counts? i have been to Mayo 2 times now, I just got my blood work back last Friday. My platelets were off some, enough to warrent concern and get them rechecked. They were low. My dr suggested I see a hematologist 2 weeks ago when I was there, what do you think? Do you see a hematologist? This dr at Mayo was an internal med dr.

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adleaded

Posted by @adleaded, Sep 24, 2011

There are 3 different types. One is high platelets, one is high red blood cells, and one is low red blood cells and low platelets. I have the high platelets referred to as ET. I do see a hematologist/onocologist for treatment. The last blood test I had has my platelets increased slightly over the prior two week blood work. Don't know what caused that since they had been going down every two weeks approximately 200 (200,000) at the time. I wonder if anyone else has had that happen. Also I get a little headache with the medication. Does anyone else suffer from this medication? I have also read in a couple of places from people diagnosed with ET have reached a normal platelett count and was taken off medication and has been fine for several years. Thats encouraging. I would like to hear from anyone here that has had the good fortune. Hope this information helps and hope there are some responses with good news. Thanks

Anonymous likes this

Posted by @lauriebwlakefrontinncom, Nov 9, 2011

I was diagnosed 2 months ago and like everyone here is trying to get answers and trying to compare my experience to others to see what is the norm. Mine was found during a normal cbc work up I had done during my yearly check up. Now I usually do not have any blood work done at my yearly check up as my insurance does not cover it and it is quite costly. So it had been about 8 years and I figured I am 47, I'm not feeling well and I have symptoms that need checking into. Symptoms were fatigue, dizzy spells, aching hips, legs, and feet, burning sensations in my toes that I dismissed as gout, and headaches. My platelet count was 1.5 million and my white and red cells were a little elevated but not to worry about. The first thing my primary doctor did was set me up with a hemotologist. He immeadiatley suspected ET but ordered a number of different blood tests to make sure. I am from Michigan and he ordered the tests be done at Mayo so it took a week or so to get the results back but that day he started me on Hydrea, 1,000mg per day, and a low dose asprin. The next week when I went in to see him he had me get blood drawn an hour before my appointment so that he could see the results by the time I got in there. In a week they had dropped to 950,000 but the tests that came back were still inconclusive so he ordered a bone marrow biopsy. I hope I NEVER have to have one of those again! That came back positive for ET and I am continuing on the Hydrea and asprin and have blood work every 2 weeks. I did experience the same thing you did as the meds go. The platelett count dropped rather quickly but when they reached 550,00 they stopped and went up. I am now taking 1,500mg of Hydrea per day and they still have not dropped in two weeks. They actually went up to 595,00. I go back next week and we will see what is next. I guess the thing that frustrates me the most is the hemo doesn't really share much information with me regarding this disease. I mean yes, he diagnosed it from the very beginning, but I have learned more on the internet and youtube then I have from him. But the trouble with what I have learned is there are very many different views. Some do not even mention cancer, where others identify it as a form of blood cancer. If you go to youtube and type in Essential Thrombocythemia-Mayo Clinic, Dr. Ruben Mesa has a very informative video on there. I would love to pick his brain! Anyway I am so glad I found this site and hopefully we can all gather as much information as possible and share it on here. There are a lot of resarch foundations too to get in volved in and rare disease support groups. Good luck!

sueg444

Posted by @sueg444, Nov 9, 2011

Have you been to the docter at Mayo Clinic? My docter there said for me to come back in a year to do all the blood work again, so Im going b ecause I believe that it is a great place;.

carollamagdeleine

Posted by @carollamagdeleine, Nov 18, 2012

Laurie, would you tell me what the bone marrow test was like please?

sueg444

Posted by @sueg444, Nov 9, 2011

Yes I see a hematologist /onclogo I have been going for19 months. I had a bone marrow test done. I went to Mayo clinic for a second oponion and he told me that I had cancer of the blood and of the bone marrow. He just looked at me and said that. I told him that the docter that I had been going to didnt say I had cancer and he said you have cancer .

carollamagdeleine

Posted by @carollamagdeleine, Nov 18, 2012

Sue, I was just diagnosed with Primary Polycythemia Vera. A different type of blood disorder. I guess there is about 1 in every 100.000 people that have this, and only 5 people out of these that have Primary., such as I. Would you tell me what having a bone marrow tests involves and how it feels? They want me to have one and I am scared.

sueg444

Posted by @sueg444, Jan 3, 2012

Yes I would say for you to see a hematologist they are trained for this type of illiness I saw Dr Tefferi at Mayo clinic but he didnt seem very interested and acted like that a lot of people have this. He didnt let me ask all the questions that I wanted to ask so I CAME HOme 700 miles with unanswered questions. My platlets are high and Im on hydrea. It worked good at first but now they arent coming down any more.

tessa

Posted by @tessa, Nov 12, 2011

I too have essential thrombocythemia (ET) I was diagnosed earlier this year. I ended up going out to Mayo clinic and had a great experience there. I suggest anyone who has this go there. They are on the front lines of all the research that is being done and once you are there your information can be added to the research and hopefully through the years they can come up with better treatment.

jfinlay

Posted by @jfinlay, Dec 11, 2011

I was diagnosed with ET seven years ago. I took anagrelide for the entire time, which kept my platelets in the normal range. About six months ago my red blood cells went down slightly so my doctor stopped the anagrelide. My platelet count stayed normal but reds continued down. I now have myelofibrosis, a rare form of leukemia. I'm scheduled to see Dr. Tefferi at the Mayo Clinic in Minnesota in February. All comments and prayers welcomed.

tessa

Posted by @tessa, Dec 14, 2011

I am glad to hear you are going out to Mayo clinic, it is a great place. I have read a bit about myelofibrosis and understand it can be a natural progression of the ET regardless of what treatment you choose. Keep us posted on what happens and what treatment they recommend, I will send some prayers your way.

jfinlay

Posted by @jfinlay, Dec 14, 2011

Thank you, Tessa, for your reply and your prayer for me. I'm forever appreciative and thankful. And I will let you (and others) know what they tell me and of treatments options we choose. Thank you again, and may God bless you.

sueg444

Posted by @sueg444, Jan 3, 2012

I am so glad to read the replies from everyone It helps me to hear what everyone else is is going through. I am 71 years old and I guess I have had this about 10 years. We went way back with the blood work and i had signs of it then,. Has anyone ever told any of you that you could or could not have a bone marrow transplant and it would help. My docter told me that I was to old to have that done. I am feeling worse all time. I dont have any energy and I think the Hydrea that I am taking is affecting my eyes a lot.

tessa

Posted by @tessa, Jan 6, 2012

I have done a lot of research on ET since I was diagnosed and have read about bone marrow transplants being done for it. From everything I have seen a bone marrow transplant is an absolute last resort and is not a guaranteed cure plus there are TONS of risks with it.

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sueg444

Posted by @sueg444, Jan 6, 2012

Hi Tessa Glad to hear from you. I dont know much about the bone marrow transplants but my docter didnt seem to want to even talk about it to me but she said that I was to old to have it done and that I probably wouldnt survive the surgery. How long have you known that you have it. Also if you have children have they been tested for it. I have 2 boys age 51 and 34 and they have had the test done and neither of them has any signs of it.

tessa

Posted by @tessa, Apr 30, 2012

I have only known I had it for almost 2 years. I dont have any children yet but when talking to the doctors at Mayo I was told it was not something that would be passed on to children. Bone marrow transplant seems to make the most sense to cure the illness but certainly a very risky procedure.

kalabala and Anonymous like this
anon60470134

Posted by @anon60470134, Jul 13, 2012

Kutenai

sueg444

Posted by @sueg444, Jul 13, 2012

do you know any new information of this essential thrombocythemia I am going to come back to Mayo in august and see Dr Tefferi but I dont know if he will tell me anything new that I havent already been told.

Anonymous likes this
jennielee

Posted by @jennielee, Oct 12, 2013

Hello, it's wonderful to reach you so easy!

Jennie Lee likes this

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