Essential Thrombocythemia

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RE: Essential Thrombocythemia

by Summershaw on Thu Nov 25, 2010 02:17 PM

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On Nov 05, 2010 11:22 AM Summershaw wrote:

 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

I just returned from the doctor's my plalelets are 450 normal range for now. My husband is estatic,thinking I'm cured. I reminded him I have been at this level before and it is not  a cure just my current level. I still have headaches, dizziness, foot and hand pain along , acid reflex and vision problems. Sandra

RE: Essential Thrombocythemia

by rhrbcf on Sat Nov 27, 2010 04:25 AM

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My son with ET was on anagrelide for two years and started showing signs of myleofibrosis after a bone marrow aspiration. We switched to hydrea and he no longer shows those signs. I have heard of other cases of myleofibrosis from people that are on anagrelide (agrelide?) and definitely would consider a different course of treatment if possible. Wishing you and your husband all the best. 

RE: Essential Thrombocythemia

by mercedes2009 on Thu Dec 02, 2010 11:13 PM

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On Nov 05, 2010 11:22 AM Summershaw wrote:

 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

I read your post and feel for you. I also do not have insurance..but I live in Mexico. I am an American who has lived here for a long (40 yrs) time. I write my family and let them know the cost of the lab tests here in Guadalajara and they are amazed at the prices. Thank God! I just had a bone marrow biopsy (sterum) yesterday - and will see the Dr. today for the diagnosis..but it seems to be leaning to ET. I was tested for JAK2 and was negative ( $200 USD) and the biopsy yesterday at a local hospital ambulatory costs total $ 480 USD and that was the Dr. fee for the procedure, the hospital room and equipment used plus the anestetialogist (!??) cause I was too chicken to have it done just with local anestesia! They did a twilight..and OMG it was WONDERFUL!! As if NOTHING had been done! I was so nervous about it and with the IV  sedation I didn't feel a THING..so worth it!  Now I believe I will be started on Hydrea and asprin...and the Dr. said that the medicine is not expensive (thank you Lordie!) !! Good luck to all...I am still in shock that I have this!! Can't believe it! I am 59, and size 16 so if you have a big butt :) like me you can't get the biopsy in your hip! I have heard horror stories of them trying and poking people MANY TIMES...the needle is only so big and if you have a big butt, it can't reach . So, this is the motivator to lose weight!!! I am also grateful for all the info I learn from people on the internet!!

RE: Essential Thrombocythemia

by Bukkett on Thu Dec 09, 2010 08:41 PM

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Hello everyone. I am new to this site. I have been diagnosed with Essential Thrombocythemia for these last 6 years. I have been on 1000 mg Hydroxyurea and thank God, I have got used to the medication which used to hurt my stomach a lot. I am now going to be tested to see if I am JAK 2 positive and I am feeling very aprehensive.  I just want to forget about my condition and get on with my life.

 

RE: Essential Thrombocythemia

by Lynnys on Sat Oct 01, 2011 09:30 PM

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I have just been diagnosed with ET. I am 58 years old. My mother was diagnosed with the same thing just over 10 years ago. I had a bleed in my adrenal gland and doctors believe it was caused by a blood clot. That is how they found out my platelet count was 800 +. I have been having symptoms of, firstly, night sweats about 8-10 years ago, then they turned into day hot flush sweats that are debilitating. My mother also suffered from these. Her and I put it all down to Menopause symptons. My head sweats like a hog if I get anxious, get too hot from working, near a fan heater, or eat. I hate them. Its sooooo embarrassing. I am wondering whether I should take any medication at all. They want me to go on Hydroxyurea but my mother has suffered so many side effects including, ulcers on her leg, hair loss, tremors of her hands, memory loss, TIAs, and has gone from a full on worker to a resthome in 11 short years. I am sooo freaking out. They say it isn't hereditary but they also say I have THE GENE the same as her. I also feel nauseous and have headaches and a chronic bloated stomach and bowel no matter what I eat. HELP please coz I haven't even started on the meds yet and the side effects of them on top of what I already have makes me wonder if I should just leave it all to Gods will. Has anyone out there refused all meds?????

RE: Essential Thrombocythemia

by sambow on Thu Oct 06, 2011 01:10 AM

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Hi Debbie

I'm an aussie and was diagnosed with ET at the beginning of this year. I'm 37 years old. My only treatment at this stage is 1/2 aspro clear each day.  How tired are you feeling.  I'm tired all the time but my specialist said that is part of the condition.  How are you managing your tiredness.

Regards

sam

RE: Essential Thrombocythemia

by sharkfin on Thu Mar 13, 2014 12:44 AM

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On May 05, 2009 12:00 AM jnt4pak wrote:

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

jnt4pak, if you  are working, then apply for disability, not ssi. re the problem with health insurance, if you are married and spouse works then you are covered by your spouse's health insurance. if single and no health insurance, then you can be on medicaid.

i hope my advice is still current as your post was stil in 2009.

i hope you have your probelms solved by now. by the way, i have been diagnosed last 10/2013, withET, too, and a patient at nyc sloan kettering cancer center. 

 

RE: Essential Thrombocythemia

by mbr8076 on Tue Jan 30, 2018 07:03 PM

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On Apr 04, 2009 12:00 AM 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

Thank you, Brian for your post. I had a heart attack last day of November 2017. I was dealing iwith that when my GP suggested I see a hemotologist due to high platelets of 950K. The hemotologist believes I have ET. I am going for a spleen ultrasound this Thursday to see if my spleen is enlarged. Does anyone know what they do if it is enalrged? But, my concern is I am suppose to fly in 3 weeks and wondered if it is a concern. I am currently on baby aspiring and Plavix due to the heart attack. 

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