Essential Thrombocythemia

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RE: Essential Thrombocythemia

by traci35 on Wed Apr 22, 2009 12:00 AM

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On 4/4/2009 Brian S wrote:

Just thought I would add my journey in a hope that it will help others that have recently been diagnoised with ET. I am a healthy and fit male and was diagnoised in 1998 (32yrs then) with ET after a getting a blood test for a fainting episode. My platelets were 1.5m. My GP referred me to a specialist. I had a bone marrow biopsi at that time. Not a great experience. I was given coated asprin and put on monthly blood tests. The coated asprin was to prevent stomach ulcers. I continued with life as normal until early 2005 when I went to my GP with what I thought was a stomach ulcer. It turned out I had a blood clot in my portal vein. I had another marrow hip biopsi and tests showed I have JAK2. My spleen swelled with the blockage but after 3 weeks in hospital with blood thinning meds the clot cleared. Incredibly scans have shown no remaining effects of the clot. The spleen is larger than normal but I can't tell. Now I am on warfarin 12ml per day, Asprin 1 per day and Hydroxyurea 1000mg per day. I have no side effects apart from when I go for a run shortly after taking the warfarin if I get really hot I get very itchy upper legs and hands. I had 1 boy prior to being diagnoised then in 1999 we had identical twin boys. All are well and my specialist said this is not passed on. I fly overseas once a year on business and have been told that I am the least likely person on the plane to get a clot due to the fact that I am on blood thinning agents already. I still wear pressure socks to be sure. I believe you should always live your life like there is no tomorrow even if you are perfectly healthy. Having monthly blood tests is great because I self monitor and adjust my Warfarin to suit my life style not the other way round. The blood test also give me the advantage over everyone else in that I will know if I develop any other ailments. I hope this gives an insight to new ET sufferers. Brian

told I have ET and Myeloproliferative back on Nov. of 2008 and I am only 35 years old, I have never smoked or drink, I work out about 4 to 5 times a week and I can not believe that this is happening to me, I have been doing a lot of reading on this and my doctor told me with this disorder that my bone marrow will give out with in 10 to 15 years, I am having a hard time excepting this, I having been taking Agrylin 5 times a day right now to get my platelets down last week they were at 542 they were at 1500 I go each week to have my blood checked. I would like to know if anyone has made it past 20 years with this? Thank you all for listening

 

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RE: Essential Thrombocythemia

by joanne875 on Mon May 04, 2009 12:00 AM

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Hello Everyone;  I am new to this site and to Thromocythemia.  I was diagnosed in January of this year.  On top of that I also have anemia and am diabetic.  I spent the first 40 days in hospital this year.  Not a good way to start the new year.

I have been reading information on this desease.  I am so greatful for this site.  I felt so alone until reading the message board.  I am taking agralyn 1 m twice a day, warfrine 5 m a day and iron medication, diabetic medication and a medication to prevent stomach upset. 

For the most part, I feel ok.  I am in pain most of the time.  My splean and pancrus were damaged by the blood clots.  I had three clots upon diagnosis.  I have a great blood specialist and a great gp that are taking care of me.  I went from weekly blood tests to every two weeks.  I was able to return to work last week.  My life is returning to normal.

I look forward to connecting with others that have this desease.  I am from Fort Frances Ontario Canada.

Joanne

RE: Essential Thrombocythemia

by jnt4pak on Tue May 05, 2009 12:00 AM

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I was diagnosed with ET in 1999 when I went to give birth to my child and had to have a c-section. I was 31yrs old at the time. It wasn't until after i gave birth that they came in and told me they wanted to do a bone marrow biopsy cause routine blood work before surgery showed my platelets to be 1.5 million. I was in total shock and i believe at that point I went from being on cloud nine to finally have my son to depressed and thinking I was going to die! I refused the bone marrow biopsy and about a week after I went to see the hemotologist/oncologist at MD Anderson who seen me while I was in the hospital. He did another cbc and platelets were still 1.5 million. He immediately put me on hydrea. I was taking it 3 times a day. They still bugged me about the biopsy but I still refused! My other cell counts were normal. Once I started taking the hydre they came down to 900,00 and all the side affects started as well. Fatigue, headaches, dizziness, scatter brained etc... I was on hydrea for about 2 yrs when they finally switched me to agrylin because they said it was more effective. OMG the migraines, tingling in my fingers, heart palpations and so on... were un bearable but I remained on it for 4 yrs and my platelets were only down to about 600,000. Also my red, and white were lowered as well. i was soooo tired all the time and was always in fear that I would get sick because of the lowered white cells so I had to wear a mask. Finally the Dr. changed me back to the hydrea because new reports found that the hydrea was suppose to be more effective long term. So now back on hydre 4x one day and 3x the next. I have since now developed constant head sweating so bad that I have to stay indoors most of the day and also pin-point red spots all over my lower legs and feet which they dont know why or why the sweating either. I am back to tired all the time, red cells are low again and the constant worry if I will develop leukemia from the hydrea. I have now been on it for almost 4 yrs. I am now trying to apply for ssi and dont know if it is  a hard thing to get approved for or not. i have no health insurance and cannot afford it if I did. With an exsisting condition it is impossible! I got to my dr on the 12th of this month to see if the increase in meds have brought them down or not. I was wondering if anyone out there has had any experience with ssi for this disease or not. Or if anyone else has had these systems with the sweating of the head and the spots on legs and feet. Legs hurt from time to time and it worries me. the DRs act like they dont know what they are or why i sweat either. So if you could lend some good advice it would be greatly appreciated!

Tracy

RE: Essential Thrombocythemia

by traci35 on Fri Jan 08, 2010 11:37 PM

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Thank you for your message, I just went back to the Doctor and he has had me on Agrylin for over a year and now he want to change my meds to Hydroxyurea, I do not understand why now he thinks Agrylin is no good.  I am hoping I can live a long life, I am glad to see someone that has this for over 10 years and is still doing good.

RE: Essential Thrombocythemia

by JeanieBeanie on Fri Jan 15, 2010 06:46 PM

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Hello,

I am very new to this and think the post I first wrote is somewhere in the general part of this site and since no one has responded I am hoping this will wrok.  I noticed your note was posted this year 2010.  I have been sent to a hematologist by my primary physician which the appt is for the 25th of this month.  After all the posts I have read I am disappointed to learn it seems there is no one in my position.  Everyone seems to be taking meds & getting blood work, etc., how are they paying for it? I am so broke and barely getting by as it is. I am not on any meds as of yet but can only afford an office visit on the 25th.  They are letting me pay half and then payments on the rest  (no lab work) and am struggling with how I will/or wont be able to afford this.  My Primary doctor is sure the specialist will put me on something other than aspirin but from what I have read people need to have blood work quite often and be on the medicine.  My insurance does not pay for ANY of this and i'm not sure I can get on medicaid because I am working and eligible for insurance.  How do people pay for these tests and medicine they take????  I also have no idea where to even begin looking for help.  I am confused and dont know where to start.  Any input you have would be great appreciated.  I hope you see this post!  Thank you!

Jean

RE: Essential Thrombocythemia

by dede51 on Thu Feb 25, 2010 09:14 AM

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Hi Guys, I was diagnosed with ET 15 years ago I am now 58, and I am on Hydrea I get no symptoms what so ever and I have no probs I hada cout of a million  and it now levels out at about 600 I have read many articles on ET.. I expect to live a normal life span which most sites say ... I have the Jak2gene as well. I wonder of too many of you guys  dwell on the fact and not just get on with life... i work 50 hrs a week and never take days off I am a happy person in myself and enjoy life, maybe my attitude keeps me well... I do believe i acquired it through chemical in Hair dyes I was a hairdresser for many years... All the best Guys Denise from Oz...

RE: Essential Thrombocythemia

by essentialrp on Sun Mar 21, 2010 12:38 AM

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Jean,

I feel for you on the insurance. I have got insurance but it has gone up drastically and now changing it, with this preexisting condition, will be impossible. So I am stuck. Where do you live?   We have a place called Church Health and Healing Center here in Memphis that helps in situations much like yours. Don't give up hope. I am wishing to do my own blood test, since it is so frequent, but not sure they offer it yet. Check with Mayo clinic and see if you can get in with some of their research development.  Be persistent and hang in there, something will turn up to help you soon.  Blessings, Patt

 

RE: Essential Thrombocythemia

by mrslynn63 on Thu Nov 04, 2010 12:44 PM

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My husband has done well with ET for over 30 years. Unfortunately he was recently diagnosed with myleofibrosis which is a likely path apparently of ET patients. We are working through all of this at this time. He continue to take agrelide which he has taken for over 10 years. Hydrea was too difficult for him. Hope all is well with you. I know your post is old but I am new to site.

RE: Essential Thrombocythemia

by mrslynn63 on Thu Nov 04, 2010 12:47 PM

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Have you been tested for myleofibrosis? Hope all is well with you. 

RE: Essential Thrombocythemia

by Summershaw on Fri Nov 05, 2010 11:22 AM

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 Diagnoised with ET and jak mutation in Jan 2000 take 1000mg hydrea daily. I have severe headches ,dizziness , palpations my hemotologist feels my symptoms are not related to ET and is sending me to  headache specialist. I don't have insurance I  live Seattle and have been searching for a way to pay for treatment and all these doctors. I have been working with much difficulty to make some payments. I have applied for ssi but the declined since I was working. It seems the only way to get any relief with the medcal stuff is to not be living. Sandra

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