Essential Thrombocytosis

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RE: Essential Thrombocythemia

by laratonya on Thu Nov 17, 2016 10:49 AM

Quote | Reply

On Tem 05, 2015 4:09 sophie713 wrote:

Yes, I have had essential thrombocytosis since 1999( prob a yr or so prior) as I watched my platelet count slowly increase with each semi- annual blood work profile, and LDH rise dramatically. I finally sought help after platelet ct rose to 1.2 mill, and a single bleeding of gums. We discussed treatment options( only 4 at the time and 1 was monitor/ aspirin) doctor explained side affects and hands down agreed on Agrylin. Within 10 days PT count decreased to 550,000.( of course he would like to see 400,000, but I'm content at 500) I have been taking Ag for 13 years, very expensive, which maybe reason doctors don't prescribe/ also a few cardiac issues for some, not myself, but at times I've gotten careless and spend quite a lot of time in the sun too soon after taking med. I've always been in good health, practice/ teach yoga, due to the fatigue being one of the major hallmarks of these blood disorders, I take quite a few supplements. I would not be able to tolerate Hydtea, etc. but certainly wish the costs were within reason.

Dear Sophie,

Are you still using Anagrelide ? It has been 2 months that I started to use this drug. Do you have any problem with it ?

Thank you,

Lara

RE: et

by S_Montag on Thu Jan 26, 2017 08:59 PM

Quote | Reply

A few folks have mentioned hair loss in this thread, which is something I've experienced since starting 1500mg of Hydrea in 2013. Hair loss is mentioned as a rare side-effect of Hydrea, but I've been unsuccessful in finding good information on the mechanism that causes it.

I've started another thread on this forum, would love to hear details of anyone's experiences with HU and hair loss!

https://cancercompass.com/message-board/message/all,94453,0.

RE: et

by Margo48 on Thu Jan 26, 2017 11:45 PM

Quote | Reply
Hi S.Montag . I used Hydroxyurea for 5 years and during that time I experienced no visible side effects, no hair loss etc.. there were some abnormalities in my blood count and liver function tests, but nothing that worried the haematologist.

RE: et

by home13oy75 on Sat Mar 04, 2017 03:54 AM

Quote | Reply

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.

RE: et

by boisid on Wed Mar 08, 2017 11:47 PM

Quote | Reply

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: et

by Margo48 on Thu Mar 09, 2017 01:04 AM

Quote | Reply
'Home' , I fully agree with Barry. You should see a haematologist asap and not self-diagnose even with your medical vackground. Stay positive in the meantime, no use worrying if you do not know exactly what is happening in your body. Best of wishes, Margo

RE: et

by ttredwell on Thu Mar 09, 2017 05:12 AM

Quote | Reply

On Mar 08, 2017 11:47 PM boisid wrote:

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

Dear Home, This might help with the depression problem. I have a problem with depression and lately I've been picturing my depression as a deep black hole in the middle of the floor. It doesn't move, it just waits for me to give in to its magnetic pull. With this awareness I keep catching myself edging closer and closer to the abyss where my thoughts get more and more doom and gloom. Then I tell myself to knock it off and step away from the blood-sucking pit of increasingly negative thoughts. It really works. I go from "it's the end of the world" to a more balanced state of mind. For years I thought those horrible negative thoughts were my feelings and that I had to feel them. Not so. My feelings are in me not that hellish pit of gloom. Good luck and be well, Theresa

RE: et

by nohrt4me on Sun Mar 12, 2017 05:52 PM

Quote | Reply

Hi, all,

I have a blog and FB page for folks with ET. http://ethrombo.blogspot.com 

On FB, https://m.facebook.com/ethrombo/

There are tips on the blog for fighting fatigue (which also helps fight depression). I do a little yoga routine twice a day that helps. Only takes a few minutes, but helps me feel balanced. Like many of us, I am trying to care for a stubborn elderly parent, and it all gets to be overwhelming at times.

I will be interested to know more about hair thinking and Hydrea. At 62, my hair has started to thin a little with age, and I am beginning to think about a severely short haircut that would make losing more hair when I have to go on Hydrea look less noticeable.

I would second the notion to see a hematologist and ask about accutane. Please let us know what you find out.

RE: et

by Margo48 on Mon Mar 13, 2017 08:19 AM

Quote | Reply
Hi, I just wanted to say that I never experienced any hair loss whilst on Hydroxyurea, and I was on it for 5 years. After the 5 years I had to change medication because I was diagnosed with unrelated cancer. So, I really would not worry about hairless, most do not experience that! Cheerio, Margo

RE: et

by Ivan1111 on Thu May 25, 2017 07:56 PM

Quote | Reply

I have been diagnosed ET - JAK 2 positive a month ago,I am 35,male.

How the story began.

During routine blood test found platelets 550 000 a year ago.I ask my primary doctor what I should do with that?She said ,it is Ok,if platelets is bellow 600 000,you don't need to do anything.I have thought all the time that something is not OK and did every month blood test in private lab.Platel ets were from min.470 000 to max.570 000 .

I decided to visit specialist and ask for opinion.He said that I should perform sam tests and with results return to him for diagnose.That tests include:gastroscopy,colonoscopy,JAK 2 test,abdominal x-ray,lang x-ray and heart x-ray.Everyt hing Ok,exept Jak 2 positive and erosive gastritis.

I visited again with results specialist and he said due to JAK 2 positive it is ET and ask me to take 100mg aspirin/daily.In the mead time I started to use medicine for erosive gastritis.

First confusing thing,in according with aspirin documentation,it can't be used in case of erosive gastritis.

Second confusing thing,I found on few sites that erosive gastritis can lead to high level of platelets up to 600 000.

Third confusing thing,some people with normal level of platelets have JAK 2 mutation positive.

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