Essential Thrombocytosis

I was so happy to receive a reply from my earlier message. Most of the messages that I've read here deal with the platelet numbers, but very little on the symptoms that are attached to E.T. I felt great two months ago when my elevated platelet numbers were spotted at my annual physical. I can't believe how fast my health went down from there! I have had aching ribs, but especially I have had pain in my fingers, toes, and back of my legs. Along this stage I was simply taking the baby aspirin. My pain became so strong--weakness and dizziness in just walking down a hallway--that I'm now on hydrea. It's been six days since I've started on this drug. I do begin to see some improvements in my pain. My doctor has said I can take Tylenol when needed for the pain. My platelets elevated quickly--about 100,000 every week, leading to that "million mark". Most interesting to me personally is that my sister was diagnosed with myeloma about the same time that I was diagnosed with E.T. So many similarities (bone marrow biopsy, ...) Thank you for all responses.

Hi,i'm ildi from hungary.

I was diagnostized with et. 1.5 year ago.I have jak 2 mutation.

I'm was on hidrea but from august i'm on interferon,because we are planning to have a baby.

Interferon has got terrible side-effects:(

Is there any researches about et. in your country???

 

 

by 

ildi

 

On 10/26/2007 Larsie wrote:

I was so happy to receive a reply from my earlier message. Most of the messages that I've read here deal with the platelet numbers, but very little on the symptoms that are attached to E.T. I felt great two months ago when my elevated platelet numbers were spotted at my annual physical. I can't believe how fast my health went down from there! I have had aching ribs, but especially I have had pain in my fingers, toes, and back of my legs. Along this stage I was simply taking the baby aspirin. My pain became so strong--weakness and dizziness in just walking down a hallway--that I'm now on hydrea. It's been six days since I've started on this drug. I do begin to see some improvements in my pain. My doctor has said I can take Tylenol when needed for the pain. My platelets elevated quickly--about 100,000 every week, leading to that "million mark". Most interesting to me personally is that my sister was diagnosed with myeloma about the same time that I was diagnosed with E.T. So many similarities (bone marrow biopsy, ...) Thank you for all responses.

I too was diagnosed after a routine physical. I had been feeling achy (soreness in joints - particularly fingers and elbows) and decided to get a check-up. The doctor called me two days later and referred me to a hem/onc. My platelets were 1.8 mill. He put me on hydrea (2 tabs daily). After 1 week, they increased by 100,000. I am now on 3 capsules per day. I take them in the early eve. so I don't really notice any side effects. This is all so new and scary....I have been doing some research and would love to share information...

I am in the United States and I have been research different drugs and their side effects and Interferon Alpha has not effects on the fetus so what you are doing is the best.  Best of luck.

 

On 11/22/2007 CeCee wrote:

 

On 10/26/2007 Larsie wrote:

I was so happy to receive a reply from my earlier message. Most of the messages that I've read here deal with the platelet numbers, but very little on the symptoms that are attached to E.T. I felt great two months ago when my elevated platelet numbers were spotted at my annual physical. I can't believe how fast my health went down from there! I have had aching ribs, but especially I have had pain in my fingers, toes, and back of my legs. Along this stage I was simply taking the baby aspirin. My pain became so strong--weakness and dizziness in just walking down a hallway--that I'm now on hydrea. It's been six days since I've started on this drug. I do begin to see some improvements in my pain. My doctor has said I can take Tylenol when needed for the pain. My platelets elevated quickly--about 100,000 every week, leading to that "million mark". Most interesting to me personally is that my sister was diagnosed with myeloma about the same time that I was diagnosed with E.T. So many similarities (bone marrow biopsy, ...) Thank you for all responses.

I too was diagnosed after a routine physical. I had been feeling achy (soreness in joints - particularly fingers and elbows) and decided to get a check-up. The doctor called me two days later and referred me to a hem/onc. My platelets were 1.8 mill. He put me on hydrea (2 tabs daily). After 1 week, they increased by 100,000. I am now on 3 capsules per day. I take them in the early eve. so I don't really notice any side effects. This is all so new and scary....I have been doing some research and would love to share information...

 

 

On 11/22/2007 CeCee wrote:

 

On 10/26/2007 Larsie wrote:

I was so happy to receive a reply from my earlier message. Most of the messages that I've read here deal with the platelet numbers, but very little on the symptoms that are attached to E.T. I felt great two months ago when my elevated platelet numbers were spotted at my annual physical. I can't believe how fast my health went down from there! I have had aching ribs, but especially I have had pain in my fingers, toes, and back of my legs. Along this stage I was simply taking the baby aspirin. My pain became so strong--weakness and dizziness in just walking down a hallway--that I'm now on hydrea. It's been six days since I've started on this drug. I do begin to see some improvements in my pain. My doctor has said I can take Tylenol when needed for the pain. My platelets elevated quickly--about 100,000 every week, leading to that "million mark". Most interesting to me personally is that my sister was diagnosed with myeloma about the same time that I was diagnosed with E.T. So many similarities (bone marrow biopsy, ...) Thank you for all responses.

I too was diagnosed after a routine physical. I had been feeling achy (soreness in joints - particularly fingers and elbows) and decided to get a check-up. The doctor called me two days later and referred me to a hem/onc. My platelets were 1.8 mill. He put me on hydrea (2 tabs daily). After 1 week, they increased by 100,000. I am now on 3 capsules per day. I take them in the early eve. so I don't really notice any side effects. This is all so new and scary....I have been doing some research and would love to share information...

 

sore joints, i would love info regarding your info,

same as everyone else here with E.T, ......1.1 mil, coming down nicely on hydrea, im just really wanting to manage the joint pain,bones in foot,knee,wrist,elbow,shoulder on left side, they all take turns yelling the loudest, and some days its only the elbow,

is anyone else finding the joint pain really really annoying?

has anyone come up with a way to sooth the pain?

thanks so much to everyone for contributing to this site, i appreciate your varied experiences and knowlegde,

hugs to all,sally.

 

On 11/22/2007 CeCee wrote:

 

On 10/26/2007 Larsie wrote:

I was so happy to receive a reply from my earlier message. Most of the messages that I've read here deal with the platelet numbers, but very little on the symptoms that are attached to E.T. I felt great two months ago when my elevated platelet numbers were spotted at my annual physical. I can't believe how fast my health went down from there! I have had aching ribs, but especially I have had pain in my fingers, toes, and back of my legs. Along this stage I was simply taking the baby aspirin. My pain became so strong--weakness and dizziness in just walking down a hallway--that I'm now on hydrea. It's been six days since I've started on this drug. I do begin to see some improvements in my pain. My doctor has said I can take Tylenol when needed for the pain. My platelets elevated quickly--about 100,000 every week, leading to that "million mark". Most interesting to me personally is that my sister was diagnosed with myeloma about the same time that I was diagnosed with E.T. So many similarities (bone marrow biopsy, ...) Thank you for all responses.

I too was diagnosed after a routine physical. I had been feeling achy (soreness in joints - particularly fingers and elbows) and decided to get a check-up. The doctor called me two days later and referred me to a hem/onc. My platelets were 1.8 mill. He put me on hydrea (2 tabs daily). After 1 week, they increased by 100,000. I am now on 3 capsules per day. I take them in the early eve. so I don't really notice any side effects. This is all so new and scary....I have been doing some research and would love to share information...

 

hello, thanks for sharing your situation, i would be very intwerested in

hearing your findings, i find the info generally available limited and often

repedative, im really wanting to manage my symptoms and be informed as they either develop or change,

sore joints are settling with time, been on 500 mg of hydrea for 3 months with defiate progress,

i have read that the pain in joints and fingers/feet etc are due to the movement of tiny clots in the thicker blood thru the smaller blood vessels,

i am keen to  hear anyopnes findings on understanding E.T  and living on hydrea, thanks again , sally.