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boisid's Message Board Messages

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RE: et

by boisid - June 14, 2018

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 boisid - June 14, 2018

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 boisid - August 22, 2017

On Aug 22, 2017 5:05 PM ElenaH wrote:

Hello! I am very new to ET as my 13 year old daughter has just been diagnosed. Her platelets are always around 2 million. Her hematologist has no experience with ET and the other specialist he consults with has only one patient suffering from this blood disorder.

I would like to take her to a specialist who really understands ET especially in young, young people. Could you please give me names of doctors who really know about ET?

Hello Elena,

First and foremost, do not panic. Essential Thrombocytosis is pretty easily manageable, and considering your daughter's youth, she likely will be monitored without being medicated.

In order to be able to recommend a doctor/specialist, it would be helpful to know where you live, i.e. city and state.

Best regards

Barry

RE: et

by boisid - March 08, 2017

On Mar 04, 2017 3:54 AM home13oy75 wrote:

Hi,

I'm glad I found this discussion. I've been diagnosed with ET about 10 years ago - just turned 45 last month. On a routine CBC my platelets were elevated at 850,000. I had a BMB to r/o other blood disorders and was diagnosed with ET. I opted out of taking any medication, and requested to just monitor my platelets. To my suprise, my platelets gradually decreased to around 450,000 - which is what it's been pretty stable at. Nontheless, I contunied on with life and put this disease state at the back of my mind. 

Fast forward to present, I recently began suffering from cystic acne and was placed on accutane. My baseline CBC revealed a hgb of 12.6 - which is lower than what I see. My LDH is elevated at 500 - but it has always been elevated throughout the years and my MD never talked much about it. My HDL began dropping to 25-29 as well. After a month of taking the accutane, my hgb dropped to 11.6 but my dermatologist still said for me to continue. After being on accutane for 2 months, my new primary HCP had my labs drawn and was concerned with the results. My hgb was still 11.6 but I also had blast cell - about 5% in my blood stream. My uric acid was also elevated. I've since stopped taking accutane, and scheduled an appointment with a hematologist. I haven't followed up with a hematologist since my platelets were under control 10 years ago. 

Although accutane can cause some anemia, I'm concerned that it might just be coincidental and my ET may have progressed to MF or AML. I'm waiting another 3 weeks to draw another CBC, but the wait is killing me. I'm also a RN so reading on the internet is probably the worst thing I can do. I almost feel like it's likely MF since the increased uric acid, elevated LDH, low HDL are all common signs and symptoms - which i have on my last blood draw. 

My son is only 4 and I have fraternal twin 11 month olds. I feel myself sinking into deep depression, and I get hit with some pretty morbid thoughts. I use to be a ICU nurse for 14 years - so I dealt with end of life situations for a long time - which I think has made me very pessimistic with my thoughts.

Thanks for reading my post - I haven't been able to vocalize my feelings so this feels good.

Hello Home,

I am certainly not a doctor, but it is difficult to believe that a anti-acne drug, even one as strong as Acutane, can cause leukemia or myelofibrosis. Regarding the latter, here are typical symptoms (from a Mayo Clinic article:

Myelofibrosis usually develops slowly. In its very early stages, many people don't experience signs or symptoms.

As disruption of normal blood cell production increases, signs and symptoms may include:

·         Feeling tired, weak or short of breath, usually because of anemia

·         Pain or fullness below your ribs on the left side, due to an enlarged spleen

·         Easy bruising

·         Easy bleeding

·         Excessive sweating during sleep (night sweats)

·         Fever

·         Bone pain

 

So if your red and white blood cell counts are OK, and you are not experiencing the above, it is doubtful that your condition has morphed in to MF. You should, as you indicated, see a hemotologist.

Best of luck and please, please don't panic or let yourself get depressed. 

Barry

RE: Essential Thrombocytosis

by boisid - November 10, 2016

On Nov 10, 2016 9:44 PM AllenH wrote:

Hi Margo,

Thanks for the post. I hope your RCC is under control now. Life is a real balancing act at times.

I am aware of the AML and MF possibilities of this disease. One day at a time for me.

I am praising the Lord that my ultrasound yesterday revealed no blood clots. I just pulled a leg muscle.

Allen

That's great news Allen!

Best regards

Barry

On Jul 02, 2015 7:36 PM Karenann12342 wrote:

Was wondering if anyone takes Arylin instead of hydroxyurea?  I have been on it for quite a few years.  No one mentions taking it.

Hi Karen,

Are you sure that's the nname of the drug you use. Do you mean Anagrelide ?

Best regards

Barry

While I understand your concern, it would not be appropriate to give you medical advice as I am not a doctor.

What I wrote before is my experience and learning.

Keep conferring with her hemotologist, and best of luck and health.

Bestr regards

Barry

On Jul 01, 2015 6:47 PM rshah wrote:

On Jan 25, 2015 1:19 PM daizyjune wrote:

Keep walking!I walk 3-5 miles 5 times a week, it is the best exercise you can be doing

Hi All, Thanks for wonderful information.

My mom has been detected with ET. she has been on Hydroxyurea dosage of 1000gm a day. Her platelets are dwn to 5.0 .However her RBC count are also going dwn to 3.6.Is "" target="_blank" rel="nofollow">http://3.6.Is " target="_blank" rel="nofollow">3.6.Is it beacause hydroxy urea decreases or breaks RBC along with Platelets. WBC are normal. Recently she underwent Bypass surgery.

It would be appreciable if someone can throw light on this.

Thanks in advance!

Hello Rshah,

You are correct. Hydroxyurea, aka hydrea, does indeed suppress platelet production, but also white and red blood cells. While 3.6.Is somewhat low, the doctors look at hemoglobin level as just as, if not more, important.

As long as her doctor is monitoring the situation, Mom should be OK.

Best regards

Barry

Hello. There is an entire thread on the subject of ET, and you will get much information there. Some of it is also nonsense, but it is a good place to start.Here is a link:

http://www.cancercompass.com/message-board/message/all,4093,

I am in the same situation as you, although my ET was first noticed about 27 years years ago before it even had an "official" name. It was simply described as a myleoproliferative disorder.

For the last 7 or 8 years I have been seeing an excellent hemotologist who has treated me with a medicine, hydroxy urea (aka hydrea), and my platelets are under control. I have no other issues and live my life, and hope to do so for 20 or more years, to the fullest. I am 68, soon to be 69.

Best of luck and health

Barry

RE: Essential Thrombocythemia

by boisid - December 22, 2014

On Dec 21, 2014 5:02 PM Melodee07 wrote:

I have had ET also for 7 years and I am also 60.  Wasn't diagnosed until 2 years ago since my PCP kept missing it.  Doc may start me on hydrea in 6 mos.  Platlets keep climbing now at 750,000.  The stress and worry are taking a toll on me.

Hi Melodee,

I have had high platelet readings since they have been measuring it! It was first noticed when I was 41 years old (I'm now 68), and no name was given to it other than the very generic "myeloproliferative disorder.". My platelet levels always hovered around 1 million and as high as 1.2 million. Finally, about 6 or 7 years ago, I was given the diagnosis of essential thrombocytosis, or ET. 

My hemotologist started me of on very low doses of hydrea and very slowly increased the dosage. For the last 4  years (maybe 5), the levels have been 350-450000, which is just fine.

As I've posted before, I am a very active physical fitness advocate, and have been for most of my adult life. The ET hasnever hindered me from my exercising, nor has the hydrea from which I have no side effects. 

As long as you are being monitored by the right hemotologist you'll be just fine. This is especially true vis-a-vis new research and new drugs being developed which may not only control ET, but if we are lucky, cure it!

The point is to live your life, and do not be frightened in to simply curling up and feeling sorry for yourself. ET is NOT a death sentence nor an indication of a lessened life expectancy.

Once again, make sure you have the right doctor(s) and you'll be just fine.

Best wishes for a healthy and happy Holiday season.

Barry

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