Comments on: Essential Thrombocythemia and Acceptance.

By: Kristen

Kristen — Thu, 05 Jan 2012 14:44:39 +0000

Hi Susan,
I was diagnosed with ET a few weeks ago at age 16. In order for me to be asymptomatic, i have to be below 300. The highest I’ve ever gotten was a few away from 1 million. My face would swell up, i had a headache for a good 5 months straight, I had a mini stroke because my blood was too thick, I would lose the feeling in my face, hands, arms, and legs, I would constantly lose balance, I’d get extremely confused all of the time. I thought it was th worse thing ever. They thought I had MS, so they did a spinal tap. Thankfully, I didn’t have that! So, i had to get a bone marrow biopsy and aspiration done. That confirmed that I had ET since my JAK2 came back positive. Right now, I am taking amatriptyline, anagrelide, a baby aspirin, and also an iron supplement because I’m anemic. After reading your pose, along with everyone else’s, it made me accept it better. Thank you all and good luck!

By: Jenny Meyrick

Jenny Meyrick — Fri, 25 Mar 2011 16:12:53 +0000

Hi Susan,
I am in the UK so perhaps medical terms are slightly different here! My consultant is a Specialist Haematologist, and I have had ET confirmed with a bone marrow biopsy. He said that he would rather use interferon because of my relatively young age of 42, but I am not altogether sure of his reasoning.
For the last seven years, I have just been taking low dose aspirin, which I hope will be the case for some time yet!

By: Susan

Susan — Sun, 20 Mar 2011 14:28:14 +0000

Jenny,

You said a “consultant” warned you that you could be put on interferon injections if your counts remain high. Although, I am no expert, I would recommend that you see an hematologist/oncologist (H/O), who is an expert in the field of essential thrombocythemia. Have you had a bone marrow biopsy? It’s the only true way to confirm an ET diagnosis … not painful, just some soreness.

I was diagnosed with ET 3 1/2 years ago and am taking hydrea 2Xdaily. Although, my counts are rising again, my H/O has never recommended interferon, but has discussed increased my hydrea to 3Xdaily.

Keep us up-to-date on your progress.

Susan in NC

By: Jenny Meyrick

Jenny Meyrick — Tue, 15 Mar 2011 12:59:07 +0000

I was diagnosed with ET in 2003 from results of a routine blood test in pregnancy (3rd child). Looking back at previous blood tests, my doctor confirmed that I had had the condition for at least 7 years prior to that test, but it had been overlooked by my previos doctor.
I take aspirin daily but have no other medication as yet- my count was up over 700 last year and the consultant warned me that I would be put on interferon injections 3x per week if the count remained this high. Fortunately at my next consultation, my count had reduced to under 600, which I can only put down to having been on holiday just before and therefore under less stress.
I had no problems falling pregnant with my 3 children, infact the 3rd was a suprise as I had a coil at the time!
Is there anyone out there who can tell me how life is on Interferon, as I am sure I will end up on it at some point?

By: Gates Takata

Gates Takata — Sat, 29 Jan 2011 14:52:12 +0000

Kanetta, thank you so much for starting this blog. There are other support sites online but it’s difficult to communicate and keep in touch with people on those sites. I am 37 and found out I have ET a couple of years ago. I had to have my thyroid removed and when I got my blood tested before the surgery my platelets were pretty high. They almost did not do the surgery. After the surgery I had the have my blood tested quite a bit to check to make sure my thyroid medicine was the right amount for me.Each time they tested my blood the platelets were getting higher and higher. At one point they were over a million. I was referred to a Hem/Onc and after a bone marrow biopsy (Ouch!!) he diagnosed me with ET. (I always think “ET, go home”. I don’t know where it came from and why it took residence in my body, but I certainly wish it would go home!) At the time of the diagnosis I was very single and childless but still hopeful that I would one day be a Mother. So my main concern was having to take meds that could cause birth defects. I asked my Dr a lot of questions to determine what my options were, being a relatively young woman with this disease. At one point he said, “Carla, you are 36 years old and not even married yet.”. He is a well respected Dr but has a rep for having a poor bedside manner. When I left the office that day I got in my car and the flood gates opened. I cried for about two days. When those two days were over I accepted my fate and I haven’t looked back or shed one more tear about it. The good thing about this is that it opened my mind to dating men who didn’t want children. I’ve since met and married a wonderful man who has two adult children and is looking forward to the next phase of his life and doing all those things you can not do when you have little ones. He said he will make sure I have a happy life even without having a child. And now grandchildren are still a possibility!!! When God closes a door he always opens a window.I’ve been having regular appointments with my Dr. As of today, I am on 1000 mg of Hydrea one day and 1500 the next. I am tired all the time and it’s frustrating for me and my loved ones because no one seems to really understand. They just are upset when I can not do all the things I was once able to do without getting so tired. I still consider myself lucky that I was diagnosed and treated before I had an episode. We all know how damaging a stroke can be.There were a few things that you said that I can certainly relate to, one being the flickering lights in your vision. “Broken glass” is a good way to describe it. I was saying it looked like a segmented snake, lol. I had no idea that was a symptom of the disease. How did you find that out?? I also found it interesting that you said you thought stress was a factor. I’ve had an anxiety disorder ever since I was 18. I am currently taking meds for it but I know I do not handle stress well at all. I really make it a priority in my life to limit the amount of stress. I mean, life is for the living and there is always a certain amount of stress, but I eliminate all that is unnecessary.Again, thank you for sharing your story and I really hope to keep in touch with you and all the others who visit your blog.
+1

By: louisa toureiro

louisa toureiro — Thu, 30 Sep 2010 10:18:23 +0000

Hello all
Just hopping to hear for a miracle that will stop me feeling so depress and tired all the time .
Sorry i am not very good in expressing my feelings on [paper] i am more of a face to face person, lately iam nauseas all the time.I agree it is nice to share experiences.

By: Carrie

Carrie — Mon, 27 Sep 2010 02:15:02 +0000

I was diagnosed with ET almost 2 yrs ago, I tested positive for the JAK2 mutation. I take a baby aspirin daily and my counts are between 600 – 700. I am very active, love to run, bike, and swim. Recently I have noticed my right lower leg and numbness. Susan, it sounds like you experienced this as well. Is this something that went away or has it been continuous? The only other symptom I have had is the headaches.It is nice to have a website to share experiences.

By: Daniel

Daniel — Mon, 26 Apr 2010 21:46:21 +0000

I’m 23 and I’m one of the apparently rare people who have ET during childhood.Since I was 2 yo, i went to the Hem/Onc with counts like 2,000,000. It never caused much trouble to me besides headaches once in a while. When I turned 12, I went on a walk in the Miami heat and forgot to bring some water. Afterward, I got dehydrated and together with my 2,000,000 PLT count suffered a huge three day migraine ending with blindness and stroke. Blind and incoherent, doctors told my parents that if I stayed in this state for another 48 hrs, that it would be permanent. Three days later, I wake up and see and remember my beautiful family.Right next me in intensive care, was a 15 year old boy who had heatstroke while playing hockey with his dad. He had lost his motor skills, memory, and had to start from zero. I think that my recovery was nothing short of a miracle. I know that God healed me and continues to uphold me, come what may.
For the last 12 years, I have been on Agrylin and a baby aspirin a day. The headaches stopped and I had a great adolescence (as great as they get ) traveling around Europe and Africa with my family. My counts have ranged from 300-800.
In 2007, I got married and in 2008 we had our son, Aaron.
Now, I continue this medication because it’s been working so far without major side effects. In the past four years, I started having migraines with aura. This has been very different from the simple yet frequent headaches I had prior to taking Agrylin. Since 2006, I started having the aura migraines and it scared me quite a bit when they happened (once or twice a month) But recently, it’s been slightly comforting to know that it’s not connected to my high PLT count and that it’s probably just a side effect of Agrylin.
Since I seem to be doomed to a life on Agylin (or any other PLT reducing meds) you can understand my concerns about long term effects of Agrylin and especially some of the alternatives that Melissa is using to reduce PLT count.

Any suggestions or feedback are very welcome. Hope my little story is encouraging/enlightening to an ET person out there.

-Sincerely,
Daniel

By: Susan W.

Susan W. — Wed, 16 Dec 2009 16:48:48 +0000

Yesterday, I was excited with the results of my bloodwork … as the result of the 1,000 mg. of hydrea each day, my counts are holding at 538,000. However, I am concerned that (for some unknown reason) my right foot has been going numb. I am anxious to know if any other ET patients have experienced the same problem.

Thanks for any feedback.
Susan in NC

By: Melissa

Melissa — Tue, 06 Oct 2009 23:23:56 +0000

I also suffer migraines with occular auras fairly regularly and headaches that sometimes go on for 5 days or more. I am not on any medications whatsoever and I am taking all natural and herbal supplements. My platelets when diagnosed about 2 years ago were over 800 and are now down to about 630. I also experience numbness in my limbs, especially fingers and legs, heart palpitations, and daily muscle pain with or without exercise. This seems to be the case with everyone whether or not they take the medications or the baby asprin. I’ll let you know how my treatment fairs in contrast to western medicine.