Essential Thrombocytosis

 

On 3/5/2006 Maryann v wrote:

Hi I too have Thrombocytosis. I found out when I went into have my pre-op blood work done for breast cancer. We had to put off my surgery for a few weeks while I took hydrea/hydroxyurea 2000mg a day to get it down to 600. They did a bone marrow biopsy while I was knocked out the day of surgery but didn't get what they wanted from it (whatever that means). They want to do it again but I don't want to do it unless I HAVE to. I had radiation for 6 weeks and my ptl went down to 350 with that, plus the hydrea. Did you have a bone marrow biopsy? How painful was it? Are you on medication yet? For how long? Is this forever? Like you, I wish I knew more about this and who I should be seeing. I now go to my Oncologist should I be seeing a blood doctor? It is nice to know there are more of us out there. PS after requesting my blood work reports for the past 4 years I found that i have had this for at least that long untreated. My GP never said anyting to me.

i have been on hydroxyurea for 4 years with little side effects. you can live till 90. but you have to get counts once or twice a mouth. red count goes down alittle. i take 500 to 10000 a day. pete from long island

I work with medical trials but I wouldn't recommend jumping into any for ET because they have no data for the long term effects. They are just recently finding that anagrelide used in younger patients for long periods of time are causing fibrosis of the bone marrow. I was just recently diagnosed and I am 32. I hope to live a long life. After talking at length with my doctor, I will probably never use anagrelide. I also heard that Interferon works great on the platelets, the only issue is that it can cause flu-like symtoms. Most of the time I would cheer for people to get into the drug trials, but learning more and more about ET it makes me a bit hesitant. My mother passed away after a 17 year battle with breast cancer. She was usually on the trial meds, they worked great for a while... until they didn't. Then it was on to the next one. The problem with the ET is that once you destroy the bone marrow, that's it or you need a transplant. I believe that they are not so easy to come by. Sorry to go off on a ramble, I'm tired and I have so much info and disappointment running through my mind. I'm sure you understand that it's frustrating when all the people around you don't understand. Anyways, that's just my two cents. I hope you have a great day. Take care.

I was diagnosed with ET Sept '06 and have been on 1000mg a day of hydroxy.  Overall doing well and blood counts are okay.  Recently though I've been extremely fatigued, my hips and shins ache, my nails have almost stopped growing and flake off.  I have a full time job, which is not stressful, and a wonderful boss.  However, it's becoming more difficult to function normally and I am forcing myself to keep going even though I don't feel up to it.  My dr says it not from how RBC or hemoglobin it may just be effects of the medication.  Just wondering if anyone else has these issues and or any tips on how to overcome?  Glad I finally found a place where others who have ET can share info. 

 

On 1/16/2006 Suzieluwho wrote:

i was recently diagnosed with essential thrombocytosis and i havent got much info on it if there is anyone that is going threw treatment or has not yet started treatment like me and wants to correspond with me please post a message ,.. this site has been helpfull in that i can read real testomonies and not medical info . it helps to talk with someone that is going threw it personaly

I am here..tell me about yourself and how this has come into your life..

I have had ET for at least 18 years....

 

 

On 7/23/2007 becca renee wrote:

 

On 1/16/2006 Suzieluwho wrote:

i was recently diagnosed with essential thrombocytosis and i havent got much info on it if there is anyone that is going threw treatment or has not yet started treatment like me and wants to correspond with me please post a message ,.. this site has been helpfull in that i can read real testomonies and not medical info . it helps to talk with someone that is going threw it personaly

I am here..tell me about yourself and how this has come into your life..

I have had ET for at least 18 years....

 

 

Hi my brother has essential thrombocytosis for approximately 18 years also. He just had his bone marrow tested and it came back with grade 4 scarring. He has been on Annagaralide  for all this time. I match him as a doner. I keep on looking for information on this topic. Does anyone have any information or no someone with E.T. who has gone through or is going through a bone marrrow transplant.   Thankyou ,

                                                   Michelle
 

 

On 7/25/2007 michelle 1963 wrote:

 

On 7/23/2007 becca renee wrote:

 

On 1/16/2006 Suzieluwho wrote:

i was recently diagnosed with essential thrombocytosis and i havent got much info on it if there is anyone that is going threw treatment or has not yet started treatment like me and wants to correspond with me please post a message ,.. this site has been helpfull in that i can read real testomonies and not medical info . it helps to talk with someone that is going threw it personaly

I am here..tell me about yourself and how this has come into your life..

I have had ET for at least 18 years....

 

 

Hi my brother has essential thrombocytosis for approximately 18 years also. He just had his bone marrow tested and it came back with grade 4 scarring. He has been on Annagaralide  for all this time. I match him as a doner. I keep on looking for information on this topic. Does anyone have any information or no someone with E.T. who has gone through or is going through a bone marrrow transplant.   Thankyou ,

                                                   Michelle
 

 

Hi,

I'am 34 yr old, who has been diagnosed as ET on Nov 2007. Now, my plt count range from 631,000-731,000. Recent rountine test, my hematologist will suggest me on hydrea if persist with few symtoms like spleen enlarge, the count increase, fatigue etc. Now, I'm on Cardiprin 100mg to prevent any clotting. Unfortunetely, i had developed some fixed drug erruption "black marks" over both of my feets. Could any friends highlight me what shall i consider or any method to lower or maintain the plt count.

 

may you be well and happy.

 

kee

 

On 7/20/2007 Bruser wrote:

I was diagnosed with ET Sept '06 and have been on 1000mg a day of hydroxy.  Overall doing well and blood counts are okay.  Recently though I've been extremely fatigued, my hips and shins ache, my nails have almost stopped growing and flake off.  I have a full time job, which is not stressful, and a wonderful boss.  However, it's becoming more difficult to function normally and I am forcing myself to keep going even though I don't feel up to it.  My dr says it not from how RBC or hemoglobin it may just be effects of the medication.  Just wondering if anyone else has these issues and or any tips on how to overcome?  Glad I finally found a place where others who have ET can share info. 

 

Hi I am new to this not sure how it all works  but I have just read your message and I have all your symptems, I also have pain in my legs and hips and my nails flake My doctor tells me that it has nothing to do with ET  also I am very tired all the time,  but I have been told that that is not an effect of et.   I find it very fustrating and sometimes feel that the doctors I have seen think that I am over reacting    I have been on Hydra and asprin since April 2006   I used to work full time but  a few months ago I had to stop as I was finding it difficult to keep up with working and trying to have  a life because I was so tired.  I have now learned to priorities what is important and do things that have to be done and enjoy the things I like doing.   I hope things improve for you soon

I have been on hydroxyurea for 5 years. 500 6 days a week and 1000 1 day a week. was tired at first but got over it. my email is

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things will get better after you level off. I keep my levels at 350 to 550, no need to keep them lower. My wife is a nurse and helps me a lot.

 

On 8/30/2007 aussiechick wrote:

 

On 7/20/2007 Bruser wrote:

I was diagnosed with ET Sept '06 and have been on 1000mg a day of hydroxy.  Overall doing well and blood counts are okay.  Recently though I've been extremely fatigued, my hips and shins ache, my nails have almost stopped growing and flake off.  I have a full time job, which is not stressful, and a wonderful boss.  However, it's becoming more difficult to function normally and I am forcing myself to keep going even though I don't feel up to it.  My dr says it not from how RBC or hemoglobin it may just be effects of the medication.  Just wondering if anyone else has these issues and or any tips on how to overcome?  Glad I finally found a place where others who have ET can share info. 

 

Hi I am new to this not sure how it all works  but I have just read your message and I have all your symptems, I also have pain in my legs and hips and my nails flake My doctor tells me that it has nothing to do with ET  also I am very tired all the time,  but I have been told that that is not an effect of et.   I find it very fustrating and sometimes feel that the doctors I have seen think that I am over reacting    I have been on Hydra and asprin since April 2006   I used to work full time but  a few months ago I had to stop as I was finding it difficult to keep up with working and trying to have  a life because I was so tired.  I have now learned to priorities what is important and do things that have to be done and enjoy the things I like doing.   I hope things improve for you soon

The bunch up on the mussles and cause pain but an apserin will help.