Essential Thrombocytosis

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RE: Essential Thrombocytosis

by Bullwinkle on Mon Dec 24, 2007 12:00 AM

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On 1/16/2006 Suzieluwho wrote:

i was recently diagnosed with essential thrombocytosis and i havent got much info on it if there is anyone that is going threw treatment or has not yet started treatment like me and wants to correspond with me please post a message ,.. this site has been helpfull in that i can read real testomonies and not medical info . it helps to talk with someone that is going threw it personaly


hi Suziewho:

I'm writing you from Canada, with around 6 years (known) of dealing with ET. I learned about my condition with a bang: I was teaching ESL in Japan when I got a clot in my heart, resulting in heart attack + transplant. I now take anti-rejection + Hydroxyurea + Aspirin. I've had more than one disagreement/complaint to my hematologist about side affects of HDX - against their advice I often skip the HDX but am really diligent about taking my aspirin. Like Rocky, I agree that "+" attitude is really important, as well as Nutrition and exercise. I was finally able to start playing (ice)hockey last year (I was hospitalized 5.5 months in 2001...muscle atrophy...) - and being able to exercise/participate in something that reinforces for awhile a sense of "normalcy" has been a big help.  

 

RE: Essential Thrombocytosis

by robertb1962 on Thu Mar 13, 2008 12:00 AM

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Hello.  I am a male and I live in Canada (near Montreal) and I am 45 years old.  I was diagnosed with ET about a month ago.  The way they caught it is I am also diabetic and i go for blood work every now and then.  they noticed in 2005 tha my platelets were at 500,000 then last October 06, i went for more blood work and my platelets were at 907,000 so they ordered more blood work in January of 08 and they had gone up to 949,000.  I can tell you i was pretty scared at first.  Every time I checked on the net about blood platelets they mention lukemia.  My uncle died of lukemia.  So they ordered a bone marrow biopsy and aspiration.  I can say that the freezing hurt like hell but the biopsy itself i didnt feel a thing.  BUt that was about a month ago and i find that now i get like bad shocks in the area where they did the biopsy.  He said when my blood passes the million mark then he will prescribe medication.  I amdoing my best to eat better and im trying to eat organic and i ahve started taking acai juice hopeing it will help to regulate or lower my platelets.  I am still a little wary and nervous about this disease.  On the other sites they say the morbidity rate is about ten years....God i hope not.  My diabetes were very out of control and i have been very good lately and it is better controled now.  My dr told me to try not to worry about ET, he said my diabetes will probably kill me faster than the ET will.  I have blood work to do for the next 2 years...every 3 months .  I have just started getting the nerve up to look up ET on the net.  when I asked my dr if i had cancer he said "i have to say yes it is a form of cancer" which threw me for a loop.  Although the news of having ET is better than lukemia i still find myself getting depressed.   Im only 45...will i see 50..or 60?  time will tell.  Now is sit around wondering if im going to have a stroke or heart attack... I have to stop worrying about this disease and try to live with it.

RE: Essential Thrombocytosis

by Kellya304 on Fri Mar 14, 2008 12:00 AM

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Hi Robertb, 

 I don't think you should get too excited about what your doctor said. Most patients with ET are elderly, I think you still have some time before you are considered that. I'm 33 and was diagnosed with ET over a year ago and my numbers have been fluctuating from 800,000 to 1.2 mil. My hematologist is great and very knowledgeable. He has me on Hydrea to keep things in check. Basically, the most severe problems that you could get if your platelets stay high for too long would be bleeding problems such as clots or not clotting at all due to malfunctioning platelets. As far as all the research I've done says, there is not a whole not to be done to change the outcome. And yes, technically, it is a blood cancer but not in the way that the word cancer is use usually. It just means that the cells are not working correctly but most of the side effects that you are going to get with this disease is going to be from whatever medication your doctor puts you on. Just be sure to keep an eye out for any symptoms that could possibly be a blood clot. If you want some more info, go to the Mayo Clinic website and just type in Essential and it should come up on the search. You can also find a whole lot of information under Myeloproliferative Disease (MPD) since ET is one of them, the worst being leukemia. There are also support groups for other people suffering from this disease. Don't get depressed. It is a very treatable disease. Go ahead and research it. Of all the MPDs, it's actually the best to get in my opinion. Take care and good luck. Happy researching.

RE: Essential Thrombocytosis

by robertb1962 on Fri Mar 14, 2008 12:00 AM

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thank you Kellya304 for your encourging words.... if the medication beeing prescribed makes you sicker than the ET then is it better to not take meds and hope for the best? i read where some of the meds actual help to turn the ET into actual lukemia....i mean....there has to be a better way to get yoru platelets down.  maybe a natural way with excersize or something lol... if anyone has had luck getting their platelets down naturaly please let me know.. 

Have a great day everyone and good health to you

RE: Essential Thrombocytosis

by Kellya304 on Sat Mar 15, 2008 12:00 AM

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Hi Robertb,

I'm glad you found some comfort in my words. As for the medicine, researching it and discussing it at length shows that there is a very slim chance for me to develop leukemia. For you, that might be different due to your relative having it. I don't know what the genetic connection of leukemia is so I couldn't say. So far, when I lapse or take a break with the meds my numbers climb fairly quickly. For instance, I've been sick lately and had to stop taking it for 2 weeks. My numbers jumped up 200,000 in that time alone. Basically, I'm just concerned with keeping them to a manageable number so I don't run the chance of blood clots or bleeding out. Yes, the side effects are annoying but so far I have not found another way to keep the platelets in check. Please let me know if the dietary changes and exercise work. Due to my other health issues, exercise is not really in the cards right now. But, as soon as I get those in check, I'll try anything to beat this disease.

Thanks for the feedback and encouraging words. I hope that all goes well for you and good luck. And same here, if anyone has any luck with alternative therapy to get those numbers down... Please post it!

 Take care Robertb, 

 Kelly

RE: Thrombocytosis

by scang on Wed Apr 02, 2008 12:00 AM

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On 3/7/2006 Barbara2m wrote:

Maryann: I have spent hours on the internet and in various medical data bases researching ET. I think that probably your GP just isn't aware of ET and that's why he didn't catch it by your blood tests. From what I understand, the bone marrow will tell them where you are in the disease - also rule out other potential disease. I had mine two weeks ago and I tried to approach it without fear. I found out from a reference book at the library exactly how it is done. My sister told me to remember to breathe and that really helped. The doctor gave me something to calm my nerves and then something to numb the spot. I can honestly say that it didn't hurt at all because I wasn't fearful. There was bruising at the site and alittle sore the next day. But that being said - you have your cancer to deal with also. I hope you have a good support system that you can rely on and you aren't facing this alone. The hardest part of ET for me is my doctor can't really answer all my questions. Also there is no one I can talk to about it here as it is so rare. I plan to start a support group for the upstate area of South Carolina so that we can help each other. Are you a part of a breast cancer support group? Please keep posting here and let us know how you are doing.

Hi too am from Upstate South Carolina. I hope there is still a support group for this area. If there is I want to join.

I am 58 years old female. I was diagnosed 13 years ago and was treated at MD Anderson for 10 years. I am currently getting treatments at the univ of mich

I have been taking inferon a for 13 years. My platelets went from over a million to normal range and have stayed there.

I was tested for the Jax2 mutation last year and I am possitive.

Do any or you know what that means as for as treatment and prognosis?

Would love to talk with any of you who need support or have some for me.hehehe.

Looking forward to getting to know you and learning about our condidtion.

give me an information

by intan on Sun Apr 20, 2008 12:00 AM

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Hi... I'm from Indonesia. I have a friend that have this disease.She is 29 years old. We've known the disease 2 years ago. Her doctor adviced her to take hydrea, but she is afraid because the doctor said that if she takes hydrea for along time it may cause leukemia. so for this 2 years she got no treatment.She has a painful life for this 2 year, especially this year. Now i just want to know about the doctor statement. Is the doctor right that hydrea can cause leukemia???? and what about the other treatment?? thank you.

RE: Essential Thrombocytosis

by missygirl11 on Sat May 10, 2008 12:00 AM

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Hello Robertb

 I too am 45 in a few weeks. I was dx w ET 5 years ago, although I know for a fact that I have had it since about 1998. I researched all of my medical records and found the counts elevated from about that time point. In 1998 i also started having symptoms, lighting strikes in my vision., a;so known as silent migraines, loss of vision in one eye at a time, needle and thread like pains in my legs and very tired all the time. I was diagnoised in 2003,after a lapse in my health insurance.My counts were 950,000 and climbing. I have been on hydrea since and I hate it, it really makes me tired and I too am depressed because So Much IS UNKNOWN about this disease. I need you to know that I totally understand how you are feeling. I am very frustrated to know that this will affect the rest of my life, and I too am young like you. How are you feeling??? How are you doing with this???

Please let me know

Michelle

RE: Essential Thrombocytosis

by lucky123 on Sat Aug 09, 2008 12:00 AM

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Hello,

I was just diagnosed with ET.  I am a 38 years old female.  My blood count is 1250. My Doctor told me its not a concern till it reaches 1500.  I am quite concerned and feel that its just being shrugged off.  He only has me on baby aspirin for clotting.  I have been having headaches, body aches, and am drained most of the time.  Should I be concerned and get a second opinion or just relax about it.  I hope someone out there can give me some advice.

RE: Essential Thrombocytosis

by missygirl11 on Sun Aug 10, 2008 12:00 AM

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Hello Denise,

 Sorry to hear about your dx of ET. I have been living with the dx of it for 5 years now. Please by all means get a secound opinion re your treatment. Have your levels been monitored over a time period? Also, because you are symptomatic,my Dr. told me that is why I am being treated. I know what you must be going through, I have been there. Were you dx'd with a bone marrow aspiration? If so did the test you for the Philidelephia chromosome? And have they run the JAK2 on you yet?

 I too see a hemetoligist, he's womderful! In May of this year I had finally had enough of the Chemotherapy(Hydrea), and decided it was time for a Naturalpath Dr. I now see both. I have managed to control the overproduction of platelets with natural herbs and diet. No hydrea since May. The deep aches, which I know you can feel also, have also been less and I have so much more energy.

 Let me know how you are doing?

 Take Care and God Bless!

 

Missygirl

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