Essential Thrombocytosis

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et

by Mikesummer on Wed Mar 15, 2006 12:00 AM

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My husband has also been diagnosed with ET. He underwent his bone marrow biopsy May 25, 2005 and started Agrylin the same day. He was having symptoms of stroke, and heart palpitations. He was changed to Hydrea when he couldn't handle the Agrylin. We are told he has some of the best Dr's on West Coast..VA docs. He takes Hydrea everyday 1000mg, one day, 1500mg the next. It seems to have stablized his platelet count, but he is extremly run down and tired. He frequently has diarrhea, and feels like he just can't get up. His mind is alert, but he can't open his eyes. He is having to take testosterone injections now too. We are taking a trip to the Mayo Clinic in Scottsdale in April. He is 35 and shows he has had it for 3 years+. His hair has thinned a little and he has lost about 20 lbs. with no effort.

Mayo

by Maryann_v on Thu Mar 16, 2006 12:00 AM

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So sorry to hear about your husband he is too young to have to deal with all this (you too). I think Mayo is the place to go for sure. I was just reading about it on line....very interesting indeed. You will be in good hands. Are there really so few of us out there? I will be very interested to hear what they tell you about all this please share with us if you feel you can. I think we have a problem for which there is little funding and or research. Good luck to you both and make sure to take care of yourself too.

Mayo - et

by Barbara2m on Thu Mar 16, 2006 12:00 AM

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I agree - I think that ET is so rare, no money is out there to research it (no money to be made). Therefore, limited options for us at this point. I'd be interested to hear about Mayo's approach too so please let us know. I've heard so many stories about Agrylin side effects, I think I'm glad to be taking Hydroxyurea!! Hard to believe isn't it?? :) We all need to stay positive about this and do the best we can to keep our hope up. Its hard because there is literally no support/information out there. I can't tell you how much just having this bulletin board helps me! Its like my lifeline. Barbara

Et-stephanie

by Cresponge on Wed Jul 19, 2006 12:00 AM

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Hi I am a 20 year old female who was just diagnosed with ET two days ago. I have read some things about it but still not to sure what it's all about so if you could give me any information that i might need to know about how this is going to affect me that would be so helpful Thanks,Stephanie

Stephanie

by Maura on Thu Jul 20, 2006 12:00 AM

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You did not mention how high your platelet count is. Mine are 831 right now and when it readhes 1 million I will be going on interferon. by choice. There is another link also on Cancer Compass and read all the messages http://www.cancercompass.com/message-board/message/all,719,0.htm It will give you a lot of information. Copy and paste the above link. What kind of a Dr are you going to? See an Oncologist (who is also a blood Doctor) if you can. I went for a second opinion and am glad. let us know your count and what you are thinking of doing. How did you find out/ Any symptoms? If you are having trouble with the above link let me know. his is not a death sentence but you will be well informed from the link I gave you. I just checked it out and a shorter version of it is All Thrombocythemia messages i am on there and barbara and genessa. We will answer your messages. God Bless....Maura

Stephanie

by Cresponge on Thu Jul 20, 2006 12:00 AM

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My count right now is only 557.The only reason I found out that I had ET was because in march i was in the Hospital with what they thought was a gall bladder attack. Well they did x-rays,ct,and ultra sounds, and nothing was found there. Then I went to see my PCP and she sent me for a HIDA Scan,nothing showed up there either.By then it was almost May and my white blood cell count and platlette count was still high, so I was sent to a GI dr. There an endoscopy and colonoscopy were done where nothing showed up still. So by june I had gone back to see my PCP and was sent to the Oncology center by my house where there my dr thought maybe i should have a bone marrow biopsy done. Never again that was the worst. A few days like 2 after the biopsy was complete i couldn't get out of bed my back hurt so bad where they had gone in. so they put me on some steriods for a week and 3 days ago i went back and the dr told me I had ET. SO that is basicly where i stand right now.

Stephanie - et

by Barbara2m on Thu Jul 20, 2006 12:00 AM

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Stephanie- well, your counts are still pretty low. So unless you have some symptoms or indications you are in good shape for awhile. I would advise you to read as much as you can find - I guarantee you that if you do, you'll probably know more than 95% of the hematologists in the US. Its just so rare that they often don't see many patients with ET. So it pays to be informed. Maura found tons of different pages in her internet searches than the ones I found, so it helps to have others do searches too. What is interesting is that in the UK they seem to be way ahead of us in knowledge/treatment. There is a great bulletin board in the UK (I think they call it Primary Thrombicaema there - is that right Maura?) where I have gotten some good tips. For now, you need to digest all the info and let it sink in that this is something you'll be living with for the rest of your life. It is extremely rare for someone so young to be diagnosed. But it isn't a death sentence - you just have to learn how to manage it. Support from your family and others is real important too. Keep us posted on what you are told your treatment options are. Remember that the dr. can't answer all your questions but write them down and try and then throw them out here and all of us will try to help you too. take care! Barbara

Stephanie-et

by Cresponge on Fri Jul 21, 2006 12:00 AM

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Barb, Thanks for the info it really helps a lot. I know my dr said that what of the things I am at risk for are blood clots. I work in a hospital so we have people come in all the time to the ER where I work saying that they may have a blood clot, my question was that how do you know if you have a blood clot? Do you know what the signs are that you have blood clot because I know i have no idea what to look for. I mean of coarse I read about these things but if you have ever had one I would rather be talking to a real person about what to look for instead of just reading about it. You know? Stephanie Take Care

Et-stephanie

by Barbara2m on Mon Jul 24, 2006 12:00 AM

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Hi again! I really can't help you about blood clots. I know that people with ET are at a high risk of them because of the increased # of platelets. But the clots only happen if you allow your platelets to get too high. Yours are still low, so as long as you are monitored by a knowledgeable dr, you should be OK. I had nose bleeds alot for about 1 1/2 yrs but dr never took a CBC so ET wasn't in the picture until I moved and changed drs. There is another bulletin board on this Cancer Compass thing that has way more people posting - its Essential Thrombocythemia spelled out I think -- you might get answers there. Let me know if you can't find it and I'll post a link. Also, there's a really positive, uplifting board in UK. We tried to post a link but after a few days it was deleted by the administrator here. We can try again if you want. Barbara

Mayo Clinic For et

by Mikesummer on Wed Aug 02, 2006 12:00 AM

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Many of you have asked about my husbands trip to the Mayo clinic for Essential Thrombocythemia...well, we spent a lot of money, and they told him that they thought the medecine he is currently on was causing the side effects with his endocrine problems, and they wanted him to see an endocrinologist. I was very disappointed in the clinic in Scottsdale. I would say the service we received was very minimal. I left several messages for the Dr., and never received return phone calls, or a request for a follow up. They said since my husband had a positive JAK 2 test, they know his diagnosis of ET is correct and thought he should change his med to interferon. Since our visit to the Mayo Clinic, we have learned that he was tired because his Pituitary Gland was slowly dying and ceased production of all hormones. I almost lost my husband because of this. We are still seeing the VA Dr's in Las Vegas and are more pleased with them. They are searching for a link now to see if any other patients with ET have hypopituitary syndrome. If you do, please let me know.
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