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Essential thrombocythemia: Interested in connecting with others

Posted by Tessa @tessa, Nov 12, 2011

I am interested in connecting with others with this illness. I was diagnosed this summer with ET and have been to see two hematologists here in Michigan and then went out to Mayo clinic. I am a 27 year old female and wondering what kinds of experiences others like myself have had. I had doctors telling me I should go on hydroxyurea which is chemo therapy which I was very hesitant to do when I was having absolutely no symptoms. The elevated platelet count was simply found on a routine CBC. When I went out to Mayo I was told all I needed to do was take aspirin that there was no need for chemo therapeutic intervention at this time,especially because I am interested in having kids. I am interested in hearing other peoples experiences.

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Profile picture for nohrt4me (Jean)
nohrt4me (Jean) | @nohrt4me | Aug 5 8:20am

Unfortunately, there is a lag between what researchers discover and how fast that trickles down to the clinicians that we all see. How much MPN research will be affected by recent govt cuts also remains to be seen.

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tinak123 | @tinak123 | Sep 18 9:49am
In reply to @thatshappy "Good Morning Tessa. I set up a google alert for Essential Thrombocythemia because of the rarity..." + (show)
Profile picture for thatshappy @thatshappy

Good Morning Tessa. I set up a google alert for Essential Thrombocythemia because of the rarity of the disease. Only get maybe 1-2 "alerts" a month. An alert this morning led me to your post. Joined the "Mayo Group" here in order to answer you. Have never been to this "community" before. However, use the Mayo website frequently, as they seem to have the best experts and info on ET. "Lucky You" to have been diagnosed by them. I am 62, was diagnosed earlier this year, tested positive for the Jac2 mutation, am taking the Hydroxy to lower the platelets, and it is working! I am high risk, with other health issues, age etc., so the Hydroxy is most likely correct for me. Unfortunately, my Hematologist / Oncologist is a good chemist, but not very communicative. Most of what I have learned, has been online, and have saved several links that I would be happy to forward to you in an email (if I could figure out how to do that here). If you are not familiar with it, there is a doc (Ruben Mesa) the Mayo Clinic that has a utube presentation on ET. There is also something else interesting going on in regards to some Free (if you are already diagnosed with ET) DNA testing (be sure to consider the privacy issues) of which Dr. Mesa recently went on the board. Will send you the link if you are interested. Low iron is a challenge for me, and have infusions pretty regularly. The low iron that also causes major fatigue seems to be somewhat linked to the ET in my case. If you have some specific questions or want me to send you the links aforementioned, please email me.

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I could use any links that you have also. It is hard finding I anything on ET. I was diagnosed with JAK2 positive with ET take a baby aspirin and count it 572 not really wanting to start Hydroxyurea but my dr is wanting me to, I am 48 and get pretty tired lately

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2 replies
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eloise999 | @eloise999 | Sep 18 10:39am
In reply to @tinak123 "I could use any links that you have also. It is hard finding I anything on..." + (show)
Profile picture for tinak123 @tinak123

I could use any links that you have also. It is hard finding I anything on ET. I was diagnosed with JAK2 positive with ET take a baby aspirin and count it 572 not really wanting to start Hydroxyurea but my dr is wanting me to, I am 48 and get pretty tired lately

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Try the HealthUnlocked site. It is out of the UK. Sorry, I don’t know how to paste a link here. Good discussions about MPNs. Like the Mayo platform you can follow discussion threads among patients for a number of diseases.

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lynns51 | @lynns51 | Sep 19 9:56am

I have ET with the CALR mutation. My platelets are at 651. I am on only a baby aspirin for now, but I think I will be on Hydrea next month as my count keeps going up. During my last doctor visit I was given a choice to go on the chemo or just take aspirin. My doctor said that either choice would be fine, so I declined the Hydrea, but I am sure I will not be given a choice next visit as I suspect my counts will be higher. I am 74, and have no symptoms except fatigue, which could be due to my age. I found this site to be very helpful, so you might get some of the answers you need here.

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1 reply
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kaydeesc | @kaydeesc | Sep 19 12:31pm
In reply to @mabehl "My daughter is now 10 years old and was diagnosed with ET when she was 9...." + (show)
Profile picture for mabehl @mabehl

My daughter is now 10 years old and was diagnosed with ET when she was 9. Her platelet level was up to about 1.6 million and is now on hydroxyurea. I was just wondering if any one else has had experience with this disease in such a young child. I am very uncomfortable with her being on this medication and the disease itself since it is so rare, especially in children. Any info would help.

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If you can, I would connect with Mt. Sinai in NY. I have found them to be experts on MPNs. Dr. John Mascarenhas in particular.

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vickieannb57 | @vickieannb57 | Sep 19 2:06pm
In reply to @tinak123 "I could use any links that you have also. It is hard finding I anything on..." + (show)
Profile picture for tinak123 @tinak123

I could use any links that you have also. It is hard finding I anything on ET. I was diagnosed with JAK2 positive with ET take a baby aspirin and count it 572 not really wanting to start Hydroxyurea but my dr is wanting me to, I am 48 and get pretty tired lately

Jump to this post

Have they told you to take Iron and B12 . I take both and some days are better than others. My white cells are normal red cells are low but platelets are 297 I take 500 HU daily and have been on it since May of this year. This website has helped a lot lots of info here the Doctor I see is not a lot of help. I have some spots breaking out think they might be previous sun damage. My oily hair is dryer but no hair loss . So far I have had minor things happen that I think the HU might have caused but they soon leave so no major issues. Good Luck I am 71

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1 reply
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biddypoppop | @biddypoppop | Sep 20 7:36am

I am 81 and have been on HU for 11 years. My counts are currently excellent. I have only had a couple of minor adverse reactions that have passed. I have a full head of hair and only a couple of spots, fewer than most of my friends over 70. Good luck and God bless.

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1995victoria | @1995victoria | Sep 20 8:31am

I think the risk is a combination of age and how elevated your platelets are. I think over 65s usually are put on HU plus baby aspirin to try to avoid a stroke or heart attack from clots. HU to lower the platelet count, and aspirin to lower stickness of the platelets. I've been on HU plus baby aspirin for almost 5 years now, but I'm definitely over 65

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1 reply
Profile picture for nohrt4me (Jean)
nohrt4me (Jean) | @nohrt4me | Sep 20 11:21am
In reply to @lynns51 "I have ET with the CALR mutation. My platelets are at 651. I am on only..." + (show)
Profile picture for lynns51 @lynns51

I have ET with the CALR mutation. My platelets are at 651. I am on only a baby aspirin for now, but I think I will be on Hydrea next month as my count keeps going up. During my last doctor visit I was given a choice to go on the chemo or just take aspirin. My doctor said that either choice would be fine, so I declined the Hydrea, but I am sure I will not be given a choice next visit as I suspect my counts will be higher. I am 74, and have no symptoms except fatigue, which could be due to my age. I found this site to be very helpful, so you might get some of the answers you need here.

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Also CALR. Went on hydroxyurea (HU) when platelets hit 800 at age 63. Just 500 mg per day. No clots no side effects from HU. Dose was increased to 1,000 mg 3x week to get platelets into 400s. Stable now. Actually improved fatigue. Now 71.

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deanbears | @deanbears | Sep 22 9:10am
In reply to @1995victoria "I think the risk is a combination of age and how elevated your platelets are. I..." + (show)
Profile picture for 1995victoria @1995victoria

I think the risk is a combination of age and how elevated your platelets are. I think over 65s usually are put on HU plus baby aspirin to try to avoid a stroke or heart attack from clots. HU to lower the platelet count, and aspirin to lower stickness of the platelets. I've been on HU plus baby aspirin for almost 5 years now, but I'm definitely over 65

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I am "only" 55 and was put on HU last year but my platelets were over 950. I am allergic to aspirin so I also take Plavix with 1500 HU daily. Platelets are slowly coming down. It seems different docs have different benchmarks for starting HU, but even with the side effects I live a full and happy life.

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