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Essential Thrombocytosis

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RE: Essential Thrombocytosis

by JHud423 on Tue Feb 19, 2019 03:39 PM

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Thank you, Margo. I am in the U.S. I agree that there is no reason not to cover me (other than the fact that they don’t want to have to ever pay that death benefit).

RE: Essential Thrombocytosis

by JHud423 on Tue Feb 19, 2019 04:04 PM

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On Feb 19, 2019 2:30 PM CindyN wrote:

I hate so bad you have this problem, I purchased life insurance for my daughter when she was about 6. She was diagnoised at 13. Best investment I ever made for her. You should get your children a policy that they can pay now at a low rate. My nephew was diagnoised with juvenile diabetes and was unable to get insurance when he was older except through his job so I knew to get it for my daughter. I wish you luck finding it. I hear on commericial about no physical type of insurance but I am sure you have to fill out questionaire about your known health problems. Let us know what you find.

Cindy, you sound like a very thoughtful, caring person. I respect that. I am a financial advisor/investment broker, so I actually sell life insurance (which makes this whole situation even more ironic). The only problem with buying life insurance for a child, is you don’t know how much income they will have to replace when they go on to a career one day (the death benefit should be 7-10 times their annual income). On top of that, you can only buy them permanent life insurance, which is way more expensive than term policies. That being said, I definitely agree that it is very important to invest for your children in some way. But back to what I was saying about replacing income. That is my problem...I can’t get enough life insurance to protect my family, should something happen to me. I believe it is my duty as a father and husband to do everything I can to protect them. I also believe in prayer, though. I know God is in control, and I hope all of you know that as well. Since my stroke a decade ago, I’ve been in the best shape of my life and am truly blessed.

RE: et

by dcpatan on Thu Feb 21, 2019 05:28 AM

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thank you verymuch

do you have any idea  what is tripple negetive

my doctor ask for NGS test

cindyN

RE: et

by hariskar on Wed Apr 10, 2019 04:09 AM

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I found 499000 platelets 1 month ago and 540000 yesterday. I am waiting for jak2 result. I am 49 years old.

Since then I am depressed and lost my will to live, to eat and can't sleep.

Please tell me everything you can, all the positives sides of this illness. I need help to keep going..

RE: et

by dscotesel on Wed Apr 10, 2019 04:32 AM

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Hihariskar,

Just keep reading this board and I think you'll find that your depression and loss of will to live will dissipate.  Here are some positives:

Having extra platelets makes you heal faster.

540,000 is LOW for me.  Mine is 709,000.  One of my doctor's wants me to take Hydroxyurea to suppress activity in my bone marrow (where platelet factory cells - megakaryocytes - are born and where whey create platelets).  Another of my doctors agrees with me that without having symptoms - conditions that bother me - suppressing the bone marrow activity isn't warranted.  There's also a Mayo Clinic doctor (Tefferi) who recommends NOT to treat ET unless it's symptomatic.

Platelet production seems to go up when we feel stress, and also in response to inflammation.  I avoid grains, dairy, and almond skin because they can cause inflammation.

You might benefit from a consultation with a psychologist about handling yourself.  Even without any help, you may find that you can reduce or eliminate feelings of depression through meditation, watching the wind play with leaves, or just by sheer force of will.  You could also search youtube for Wim Hof videos.  He has one on a breathing technique that has a lot of benefits (you can read comments to see what people say about it).

I'm 49 too.

RE: et

by hariskar on Wed Apr 10, 2019 04:41 AM

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Thank you for reply. I didn't tell I am a laboratory doctor, so I find this result in my lab... Unfortunately there is no visible inflamation and all inflammation markers are very low. I don't know if an H1N1 infection I had on 10 February and lasted for about 20 days could be the cause of this. But from what I have read reactiv overproduction of platelets lasts about only 2-3 weeks..

RE: et

by CindyN on Wed Apr 10, 2019 01:45 PM

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Triple negative is having Jak2+, Calr and MPL Mutations. I think it is rare to have all three mutations.

RE: et

by leelillie on Wed Apr 10, 2019 10:37 PM

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For those who have seen Dr. Tefferi at the Mayo I have a question. I went to make a follow up with him (have seen him twice) and was told there are no appointments with him. His office said he was on an "extended leave of absence" and they did not have any further information. 

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