Essential Thrombocytosis

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RE: et

by AllenH on Thu May 10, 2018 02:07 AM

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On May 09, 2018 9:42 PM daizyjune wrote:

Hello all,

I have a question about bruising.  I take 3 hydroxyurea a day and one 80mg of aspirin.  A fly can go by me and I get a bruise.I go to sleep and wake up with a bruise. Any thoughts? 

I have been on 2 hydroxyurea and an aspirin for 15 years. I am 74. I also bruise easily. My skin has gotten very thin also, especially my face and arms that have been exposed to sun all my life. I have friends that take aspirin for their heart problems that also bruise easily.

You didn't mention your age but some of the bruising seems to come with age. I have been fortunate that I feel great otherwise and still am active. I cut and split firewood on my property and heat my home with wood. I still do some consulting engineering work also. Keeping a positive attitude, staying active, and trusting the Lord helps me.

RE: et

by PhoneHome on Tue Jun 12, 2018 07:00 PM

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Any idea what symptoms Dr. Tefferi would be looking for? I'm in my 40s and I'm very healthy and fit. I really don't feel like taking HU for life just yet. I do have occassional sharp pain in different parts of my body, especially my legs, and my big toe's pain has gone from occassional to more persistent. Are those symptoms?

RE: et

by dscotesel on Thu Jun 14, 2018 03:38 AM

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My doctor gave me two symptoms to watch for: tingling or pain in my fingertips or toes and an enlarged spleen.  Oh, he also mentioned a third one which is like a strange aura in your vision, kind of like looking through a hole in a piece of shattered glass.  i believe it's a result of the visual cortext not getting enough blood (because it's clogged with overactive platelets).

RE: et

by dscotesel on Thu Jun 14, 2018 03:55 AM

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Someone mentioned a study that said platelets were ok up to 1,000,000.  I think we (who have ET) are over-prescribed Hydroxyurea.  If your blood is TOO THIN, then you bruise easily.  If you have TOO MANY platelets, then the danger is that your blood may be too thick (not thin).  When you have too many platelets, your spleen may enlarge because it tends to store a percentage of your platelets (around 10%, I think).  The worst symptom of ET is having a stroke.  My doctor said that most ET patients who have strokes have enlarged spleens.  I'd prefer stay off Hu unless I notice painful fingertips or toes, or my spleen is enlarged, but I haven't bugged my doctor about it because he's so concerned.  Also, I've been experimenting with my diet (a search for "carbohydrates +hydroxyurea" is what brought me here).  There's another site with a post in which I explain: https://healthunlocked.com/mpnvoice/posts/135596712/too-many

My wife now has me trying a ketogenic diet (no carbs), because one of the posts she read about it said that platelets count went down on a keto diet.  We'll see!

RE: et

by CindyN on Thu Jun 14, 2018 02:19 PM

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My daughter's Dr at Mayo said treat symptom's not platelet count. Her platelet's have been as high as 2.8 mil. and she is not on any med. They now range 1.1-1.5 mil. She developed Von Willebrand and so she can't take aspirin, more worried about bleeding then stroke.  I think it depend's on your age as to whether you go on HU. Dr. Tefferi is her dr. and I think over 60 is when you may need it.  Her main issue is fatigue.

RE: et

by CindyN on Thu Jun 14, 2018 02:22 PM

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I think he mean's symptom's like blood clots, major things.

RE: et

by boisid on Thu Jun 14, 2018 02:54 PM

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On Jun 14, 2018 2:19 PM CindyN wrote:

My daughter's Dr at Mayo said treat symptom's not platelet count. Her platelet's have been as high as 2.8 mil. and she is not on any med. They now range 1.1-1.5 mil. She developed Von Willebrand and so she can't take aspirin, more worried about bleeding then stroke.  I think it depend's on your age as to whether you go on HU. Dr. Tefferi is her dr. and I think over 60 is when you may need it.  Her main issue is fatigue.

Hi All,

Yes, Cindy is correct. My ET was first observed when I was 40 or 41. At the time it didn't even have a name! It was simply described as a Myleoproliferative disorder. At the time my count was 1-1.2 million. It was watched for many years and generally was in the range of 800,000 to 1 million. I had zero symptoms.

Finally went to a top hemotologist/oncologist in my area (central NJ), and as I was then 61 or so, he put me on low doses of Hydrea until the counts were consistently below 400,000.

For the last 6 years, the counts seem to vary between 350,000 and 500000, with an average of 430,000. 

I still have no symptoms and am very active, biking 5 times per week for 15 miles or so each ride, and working out with light weights 3-4 times per week. 

Best of luck everyone, continue living your life, and please don't fret- ET is NOT a death sentence nor a lower life expectancy.

Best regards

Barry

RE: et

by dscotesel on Thu Jun 14, 2018 06:50 PM

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On Jun 14, 2018 2:19 PM CindyN wrote:

My daughter's Dr at Mayo said treat symptom's not platelet count. Her platelet's have been as high as 2.8 mil. and she is not on any med. They now range 1.1-1.5 mil. She developed Von Willebrand and so she can't take aspirin, more worried about bleeding then stroke.  I think it depend's on your age as to whether you go on HU. Dr. Tefferi is her dr. and I think over 60 is when you may need it.  Her main issue is fatigue.

Hi Cindy,

Next time you see Dr. Tefferi, can you ask him if he's published anything showing that treating the symptoms instead of the platelet count is justified?  I read some of his publications and they are consistent on the point that platelet counts under 1M (1000 on the test, since it's talking about 1000s) are fine.  That has always been my gut feeling, but my Dr. needs more evidence to be comfortable letting my platelet count go over the number I negotiated with him, which is 600.

Thanks!

RE: et

by boisid on Thu Jun 14, 2018 09:12 PM

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On Jun 14, 2018 6:50 PM dscotesel wrote:

On Jun 14, 2018 2:19 PM CindyN wrote:

My daughter's Dr at Mayo said treat symptom's not platelet count. Her platelet's have been as high as 2.8 mil. and she is not on any med. They now range 1.1-1.5 mil. She developed Von Willebrand and so she can't take aspirin, more worried about bleeding then stroke.  I think it depend's on your age as to whether you go on HU. Dr. Tefferi is her dr. and I think over 60 is when you may need it.  Her main issue is fatigue.

Hi Cindy,

Next time you see Dr. Tefferi, can you ask him if he's published anything showing that treating the symptoms instead of the platelet count is justified?  I read some of his publications and they are consistent on the point that platelet counts under 1M (1000 on the test, since it's talking about 1000s) are fine.  That has always been my gut feeling, but my Dr. needs more evidence to be comfortable letting my platelet count go over the number I negotiated with him, which is 600.

Thanks!

Pretty much the same with my hemotologist- he's most concerned with keeping the platelet level below 600,000.

Best regards

Barry

RE: et

by daizyjune on Thu Jun 14, 2018 09:25 PM

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My  hemotologist told me  that the 81 mg  baby aspirin is actually crucial, and in some ways even more important that the hydroxy...has anyone else ever  been told that ? Fyi, I was diagnosed at 60, am now 68, take 2 or 3 500 mg a day depending on my mood, lead a walking club and walk 3 to 5 miles 5 times a week, eat healthy,  no red meat, take no other meds ,dislike that I  have to take that one darn pharmaceutical ??

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