Nicole326
12-07-2004, 03:31 PM
Hello. I am 34 years old and was diagnosed with ET almost 4 years ago. I was unaware of high platelets and it occurred almost overnight! I was confused and sent in for a bone marrow test to rule out cancer. I was told I had ET and had to go on Agrylin. I am up to 2-3 pills a day. My platelets have been going up though and I am not sure why. I am looking for anyone else who has this disorder to hear your experiences with this medicine or an alternative.
Also, does anyone know what causes this. I was told.. "No one knows" - that was encouraging :confused:
I would appreciate any feedback!
Thanks.
Nicole
Also, does anyone know what causes this. I was told.. "No one knows" - that was encouraging :confused:
I would appreciate any feedback!
Thanks.
Nicole
Sponsor
undercoat
12-09-2004, 10:09 AM
I too have essential thrombocythemia. I am 43 and my platelets are between 577 and 730. I too had a bone marrow test which confirmed that I had ET.
Why are you taking medication? Did you have a thrombotic event, ie, a heart attack or stroke? You should read up about ET as thinking now is that if you have a platelet count of less than 1500 and are low risk (ie, young and have not had a thrombotic event) then you should be treated with low does aspirin only. I can't take aspirin so I take Plavix instead. My platelets were picked up on a routine blood test 18 months ago and I don't have any symptoms. How high are your platelets?
I have been through all sorts of hell worrying about platelets, but feel a bit more relaxed at the moment. I realise though that if my platelets started to climb, I would be totally freaked out again. It is stressful to go to the haematologist and I worry the night before. They don't know why people have ET and of all the MPDs it is the best one to have - although I would rather not have any and not know anything about it.
I would be interested in knowing how things are - if your platelets are going up, maybe it is time to have another BMB - but hey - I am just a patient, so be guided by your haem. :wave:
Why are you taking medication? Did you have a thrombotic event, ie, a heart attack or stroke? You should read up about ET as thinking now is that if you have a platelet count of less than 1500 and are low risk (ie, young and have not had a thrombotic event) then you should be treated with low does aspirin only. I can't take aspirin so I take Plavix instead. My platelets were picked up on a routine blood test 18 months ago and I don't have any symptoms. How high are your platelets?
I have been through all sorts of hell worrying about platelets, but feel a bit more relaxed at the moment. I realise though that if my platelets started to climb, I would be totally freaked out again. It is stressful to go to the haematologist and I worry the night before. They don't know why people have ET and of all the MPDs it is the best one to have - although I would rather not have any and not know anything about it.
I would be interested in knowing how things are - if your platelets are going up, maybe it is time to have another BMB - but hey - I am just a patient, so be guided by your haem. :wave:
EMG
12-09-2004, 02:54 PM
My sister has ET. She has gotten good help from the Mayo Clinic in Rochester, MN. she takes a different drug. sorry I dont know how it is spelled but sounds like ''anakrilide''. her count get up over 500,000. she has had this for 20 yr & it has caused many other health issues.
regor201
12-12-2004, 11:47 PM
500,000 or 500 for short is not a particularly high platelet count. Most Hematologists would not put parients on medication at this level. What kind of health issues do you think were caused by the ET?
stephiem92
02-10-2005, 10:47 AM
Hi there! I also have ET and am 48 years old. I have had it since at least 1992 but think it goes back further. I have not had many health issues with it. My platelet count has risen substantially in the past 3 years which really bothers me! To reiterate what someone said on an earlier post, usually doctors do not treat someone with a count of 500,000 unless there has been a thrombotic event or some bad symptoms. I am holding off on treatment for as long as I can. I know that some are in disagreement with this opinion but I really don't feel comfortable about the available meds. for our condition. Up to this point I have been feeling fine and take 1 baby aspirin a day.
tomatoes49
02-11-2005, 10:38 AM
i also have ET
I was idagnosed in august after my bone marrow biopsy
then a week later i found out i was pregnant
i took my baby asprin everyday , and last friday i was admitted in the hospital with a DVT (deep vain thrombosis) in my femeral vain (in my groind )
my left leg was completely blue
turns out all the asprin may not have beeen able to prevent this
so now i am on Lovenox a diffrent blood thiner
where you have to get a shot in the belly every day for 3 to 6 months ( yes my poor pregnant belly )
and they dont know how long it will take the clot to go away
everyones diffrent and this could be weeks
so i was released on wed and am on bed rest , with limited activity
to assure the clot doesnt travel anywhere unsafe
my platletes were about 850 at the highest and are now right below 400
but hemotoligist say that its common for them to lower in pregnancy
i thought i was fine
turns out you still have to be carefull
TAKE YOUR ASPRIN PEOPLE beacuse this is so not fun
I was idagnosed in august after my bone marrow biopsy
then a week later i found out i was pregnant
i took my baby asprin everyday , and last friday i was admitted in the hospital with a DVT (deep vain thrombosis) in my femeral vain (in my groind )
my left leg was completely blue
turns out all the asprin may not have beeen able to prevent this
so now i am on Lovenox a diffrent blood thiner
where you have to get a shot in the belly every day for 3 to 6 months ( yes my poor pregnant belly )
and they dont know how long it will take the clot to go away
everyones diffrent and this could be weeks
so i was released on wed and am on bed rest , with limited activity
to assure the clot doesnt travel anywhere unsafe
my platletes were about 850 at the highest and are now right below 400
but hemotoligist say that its common for them to lower in pregnancy
i thought i was fine
turns out you still have to be carefull
TAKE YOUR ASPRIN PEOPLE beacuse this is so not fun
hazeleyes43
02-21-2005, 07:48 PM
I have just decided to go on line to hear about other cases. I too have ET and my
my count at the present is 1333000.00 (yes over one million)and I was diagnosed
in 2001. At that time they were 125000.00. The doctor said some times it is hereditary. I don't know if that is so because I don't know my father. I have been
on agrylin off and on since 2002 and I suffer severe headaches with it. Every year I get a bone marrow biopsy. At this time the doctor is going to switch my medication to Hydroxeria. I am afraid o f this medication because of the side affects ( which are, rash, lukemia, vision lost headaches,.etc....). Mine is at an alarming number, so if you get any information please let me know. Also when I was on agrylin I had to take five a day in order for my count to go down. The pressure from the meds was too much to handle. I wanted to cut my head off every day.
my count at the present is 1333000.00 (yes over one million)and I was diagnosed
in 2001. At that time they were 125000.00. The doctor said some times it is hereditary. I don't know if that is so because I don't know my father. I have been
on agrylin off and on since 2002 and I suffer severe headaches with it. Every year I get a bone marrow biopsy. At this time the doctor is going to switch my medication to Hydroxeria. I am afraid o f this medication because of the side affects ( which are, rash, lukemia, vision lost headaches,.etc....). Mine is at an alarming number, so if you get any information please let me know. Also when I was on agrylin I had to take five a day in order for my count to go down. The pressure from the meds was too much to handle. I wanted to cut my head off every day.
kim_drum
03-01-2005, 05:21 PM
Hi, I am 33 years old and was diagnosed with ET last week after a bone marrow biopsy. Last Wednesday my count was 520 and yesterday at my follow up it was 890. I have had minor aches and pains here and there in my joints (wrists and behind the knees) and dizziness/vertigo type feeling sometimes. But no swelling. My Doctor at Mt. Sinai is going to speak with her other colleagues because she is not sure whether or not she wants to put me on hydroxurea. Her concern is that my count is fluctuating so much in such a short period of time. I do take my baby aspirin every day. I am uneasy about taking any meds, especially a chemotherapy drug. I have not had a thrombotic event. I was hospitalized last August for hiatal hernia and while in the hospital my count was 700 which was not alarming at the time because I was sick. Before this I had no medical conditions or problems and unfortunately I never got a physical or bloodwork done for many years because I always felt great so I have no way of knowing how long I have had this. Although, I have always been a blood donor until a little less than a year ago and I would think that it would shown up when they tested the blood so I assume that I acquired this within the last year. I would hate to think I could have harmed someone else. It is not hereditary in my family on either side. It is unnerving to think of the possible risk factors and not having any control over this but I am thankful that it was not something worse like cancer. I have been researching MPD's/ET on the internet but unfortunately there's just not a lot to learn about it. I wonder if it is really as rare as they say or if there are lots of others that don't have symptoms and don't have bloodwork done regularly and are none the wiser. Just a thought. Its nice to have others to talk to about this. Any feedback is appreciated. thanks, Kim :wave:
cherylrita
03-02-2005, 09:44 AM
Hi,
I have just found this site. My husband is the one who has ET and was diagnosed in November 2003. In answer to a comment by Hazeleyes43 about severe headaches. My husband too was suffering it wasn't until his platelet level was on the decline that they started to go. Now his level is at a safe level his headaches have gone.
He has been on Hydroxurea (Hydroxycarbamide) since January 2004 and this is what's brought the level down. Yes, there are side effects but at least the drug does control the platelets. You do need help to control the level its out of your control. What's the alternative. It was a heart attack for my husband. (before his MI you would never guess he was the type to have one. It was ET that caused it) His GP never followed up a high count in 1999, if he had of done then he would have been diagnosed sooner and maybe his MI would have been prevented. Not taking the drug was not an option for my husband. We have to trust the professionals until someone can prove otherwise. Dark Chocolate and Red Wine have been linked to helping reduce the platelet level. Cheers.
I have just found this site. My husband is the one who has ET and was diagnosed in November 2003. In answer to a comment by Hazeleyes43 about severe headaches. My husband too was suffering it wasn't until his platelet level was on the decline that they started to go. Now his level is at a safe level his headaches have gone.
He has been on Hydroxurea (Hydroxycarbamide) since January 2004 and this is what's brought the level down. Yes, there are side effects but at least the drug does control the platelets. You do need help to control the level its out of your control. What's the alternative. It was a heart attack for my husband. (before his MI you would never guess he was the type to have one. It was ET that caused it) His GP never followed up a high count in 1999, if he had of done then he would have been diagnosed sooner and maybe his MI would have been prevented. Not taking the drug was not an option for my husband. We have to trust the professionals until someone can prove otherwise. Dark Chocolate and Red Wine have been linked to helping reduce the platelet level. Cheers.
dodieh
03-23-2005, 12:38 PM
:nono: Hi everyone,just joined the site what a comfort to me reading your notes,Had a stroke 3yrs ago due to head abcesses am now p/sighted an have left sided w/ness.2yrs ago d/nsd with un/thyroid have recently had a venogram still awaiting results,also raised pc on last blood test. Am now waiting for app, to see heamo count was 680 very low to some of you,am feeling tired an achy a lot have been since the stroke My doc has just informed me [going thru my notes] that my pc was really very high 26yrs ago,nothing was done back then about it
refinnej_72
03-26-2005, 01:25 PM
Hi there,
One of the older threads on ET had a poster who said that he takes baby aspirin every day and every 3 months or so goes to donate platelets. He wrote that he feels better for a long while after doing this. Perhaps this is an option to prevent any episodes? I know that would be my first option before taken any of the medications. Just a thought.
Jen
One of the older threads on ET had a poster who said that he takes baby aspirin every day and every 3 months or so goes to donate platelets. He wrote that he feels better for a long while after doing this. Perhaps this is an option to prevent any episodes? I know that would be my first option before taken any of the medications. Just a thought.
Jen
dodieh
03-26-2005, 06:14 PM
:nono: Hi everyone,just joined the site what a comfort to me reading your notes,Had a stroke 3yrs ago due to head abcesses am now p/sighted an have left sided w/ness.2yrs ago d/nsd with un/thyroid have recently had a venogram still awaiting results,also raised pc on last blood test. Am now waiting for app, to see heamo count was 680 very low to some of you,am feeling tired an achy a lot have been since the stroke My doc has just informed me [going thru my notes] that my pc was really very high 26yrs ago,nothing was done back then about itanyone had this happen
trishcq
04-09-2005, 03:03 PM
Hey-- I am 23 years old and have just found out that I have a platelet count of 1.6 million. As I'm reading through other postings, I have not come across anyone saying that their count was that high. Two months ago was the first time that it had been identified by a blood test but I have no idea how long I have had this problem. The first test showed that it was 1.3 million, and since then, it has gradually gone up to 1.6 million. I have been seeing a specialist who recommended another specialist to me that will talk about treatment or observation of the platelet count. My appt isnt for another 3 weeks and until then I am left hanging. The hematologist that I have been seeing recommended not treating me to bring my platelet count down but the more I read, the more I worry that not doing anything may not be such a good idea. But I'm only 23!!!
Has anyone ever heard of a platelet count this high or at this age or what the treatment is for such a high count?
Has anyone ever heard of a platelet count this high or at this age or what the treatment is for such a high count?
lgoldblatt
04-21-2005, 05:54 PM
It looks like we have a very similar situation. My counts are between 1.2 million and 1.6 million. I was taking baby aspirin every 3 days but I was getting severe bruises so my doctor took me off the aspirin. I am just monitoring for now but she will medicate me if it goes above 1.7 or 1.8 million. I certainly know how you feel! It is very difficult when you know your at risk, but the medication also can put you at risk for developing leukemia. Hang in there! Just keep monitoring & you will be fine.
SJN
06-12-2005, 02:10 AM
Hi everyone,
I too, was diagnosed with Essential Thrombocythemia with platelets at a million. I take 1500 mgs of Hydroxyurea a day with a 81 mg aspirin. Recent research has shown there is a genetic mutation of the gene JAK2 which permanently activates an enzyme - a tyrosine kinase - involved in the proliferation of blood cells. (Like the "on" switch gets left on)
Our bone marrow is overproducing (proliferating) blood cells.
There is information on the web, just do a Google search on Myeloproliferative disorders.
Hang in there!
Sue
I too, was diagnosed with Essential Thrombocythemia with platelets at a million. I take 1500 mgs of Hydroxyurea a day with a 81 mg aspirin. Recent research has shown there is a genetic mutation of the gene JAK2 which permanently activates an enzyme - a tyrosine kinase - involved in the proliferation of blood cells. (Like the "on" switch gets left on)
Our bone marrow is overproducing (proliferating) blood cells.
There is information on the web, just do a Google search on Myeloproliferative disorders.
Hang in there!
Sue
SJN
06-12-2005, 08:21 PM
Yes, my counts were all high when I was diagnosed. But most are controlled now by medication. The highest my wbc went was 18.3. Try not to get too nervous. Sometimes these counts can be high due to the result of a bacterial infection.
BeatleFan2
06-13-2005, 07:52 PM
My husband, who is 52, was diagnosed with ET 4 yrs ago through a routine blood work-up (we've come to the conclusion that he probably had it at least 2 years earlier). Doctors don't know what causes it - thus the name "essential". He is on Agrylin 1 mg twice a day. Platelet count was up to a million but with Agrilyn it is kept down to just over 400,000 pretty consistantly. Not only is the count important, but the size of the platelets. My husband has "gigantic" platelets - that's the doctor's term. He sees an oncologist. She says it is considered cancer. We have learned a lot on the web about this and other Myeloproliferative disorders. His symptoms have changed over the years and most were mainly just bothersome: leg swelling, night sweats, rashes, sciatica, mood swings, extreme tiredness. But the worst was depression. Anyone out there with depression please listen to this. He would not take medication for depression for the longest time. He didn't want to admit it. Lost his job, used up all our savings. But - oh my gosh - once the doc convinced him, and he started taking it - Wow, what a change! That was the worst time and now things are so much better. He is like a new man. Even went off the depression med a year ago is still doing fine. Back to work. Still has weird symptoms that his doc says are associated with his ET - headaches, itchy scalp, bruising. In march he had his first major thrombotic episode. Thought he had a heart attack - pretty scary. Doc says this is what he has to look forward to: heart attack or stroke. Not a great picture, but I'm glad we've come as far as we have and he sees things differently now.
SJN
06-13-2005, 08:35 PM
Hey BeatleFan!
I was under the understanding (obviously wrong) that if our counts were controlled chances of stroke and heart attack were minimal? Eeeek. Now one more thing to worry about!
I was under the understanding (obviously wrong) that if our counts were controlled chances of stroke and heart attack were minimal? Eeeek. Now one more thing to worry about!
rosecroft
07-22-2005, 03:08 PM
My wife has ET and was dx 9 years ago while she was pregnant with our first child. He was born early due to her ET. Our 2nd child came 2 years later and was early as well. Today both children are doing very well. My wife is 35. Her platelets always hovered around 1.6 million. She never went on any meds except for 81mg aspirin every day. She has never experienced any symptopms for 9 years except a migraine every so often. Recently she had a CBC done and her platelets were 2.1 million. Again, no symptoms. We are going to see her hematologist in a few weeks. Hydrea may be an option. Anagrelide w/ aspirin vs Hydrea w/aspirin was recently studied in Britain by a team of doctors (Dr. Green) and it was found that Anagrelide has too many adverse side effects w/aspirin and the study was stopped. Also their is discussions that Anagrelide may help to induce MF. We do not want to start any meds at all because my wife feels great but we worry that a stroke or heart attack could be caused by the high platelet count. We'll have to see what the doctor says. Anyone have any issues with taking Hydrea right now? Any recommendations on meds?
Tami3114
03-16-2006, 12:00 PM
:wave: Hi. I wonder if anyone posts here anymore...I'm 27 and I was diagnosed with ET in March of last year. I went in because of a miscarriage, and my platelet count was near one million. Since then it has soared to 1.8 million and I have had two more pregnancy losses. My doctor only has me on a baby asprin. I have had headaches in the past, but since my number has climbed it seems they have went away. I am going to the Mayo Clinic in Rochester next week so hopefully I will find outmore answers. if anyone else still wants to chat about this tha would be great. :)
newpup
03-21-2006, 11:45 PM
Tammi,
First, let me tell you how sorry I am about your miscarriages. I feel you sadness because I too, had several.
I can't wait to talk to you after you go to the Mayo Clinic. Don't know if you've read any of my info., but I have platelets over 1 million and my family doc and hematologist want me on Hydrea. I do NOT want to take this. I have no symptoms, understand there are risks, but I still don't know what to do. Some people say their doctors put them on meds at 5-600,000. Then, there are those with numbers over 1 million not on meds. I'm really confused.
Thanks and let me hear from you when you return.
newpup
Vickie
First, let me tell you how sorry I am about your miscarriages. I feel you sadness because I too, had several.
I can't wait to talk to you after you go to the Mayo Clinic. Don't know if you've read any of my info., but I have platelets over 1 million and my family doc and hematologist want me on Hydrea. I do NOT want to take this. I have no symptoms, understand there are risks, but I still don't know what to do. Some people say their doctors put them on meds at 5-600,000. Then, there are those with numbers over 1 million not on meds. I'm really confused.
Thanks and let me hear from you when you return.
newpup
Vickie
PM73
03-29-2006, 11:11 AM
First, let me say that I am very sorry for your loss. My doctor also told me that sometimes thrombocytosis does cause miscarriage and one even said it can cause birth defects???? But then again, the couldn't say for sure. Tried to do some research on thrombocytosis and pregancy but found virtually nothing, and yet I think this is quite an important issue for many of us. So anybody out there with a platelet issue and concerns about pregnancy, please do tell how it went and what your doctors said.
Tami3114
03-29-2006, 04:31 PM
I feel really relieved after going to the Mayo Clinic and talking with Dr. Tefferi. He is the leading hematologist doing a study of Thrombocytosis in young women. He currently has 9 patients with this disorder. I will tell you what he told me, but since I didn’t record it, it won’t be word for word, so this is how I understood what he said.
Normal people have cells in their bone marrow producing red cells, white cells, and platelets and they are coming from cells A, B, C, D...and so on. Well in our bodies, cell C decided to take over and tell all other cells to stop producing blood cells. This would be ok, except Cell C is mutated and produces too many platelets. Our bodies will adjust to this count, and we have only a slightly greater risk of developing blood clots compared to normal people. The only thing that will increase your risk of developing clots is if you are over the age of 60, or have previously had clots. He did some labs to make sure everything else was normal, and to make sure I didn’t have a genetic disorder that made me allergic to aspirin. He recommended I stay on one baby aspirin per day for the rest of my life. He does not suggest any sort of medication to reduce the platelets since I am otherwise healthy. The side effects of medications would be way worse than the small % chance of blood clots. Over the next 10 years my life expectancy is that of a normal healthy individual. 20 years from now that decreases by 4%, and 30 years by 8%. The reason our life span is shorter is because of the risk of thrombosis and an increased risk of developing leukemia. If your platelets ever decreased on their own, it would be a bad thing, because this would mean your Cell C is shutting down, and you will also be producing less white and red blood cells, this causing leukemia. Of the 4% and 8% of individuals who’s life span was cut short, most of them had at least three of the following:
1) Over the age of 60
2) Smoking
3) Diabetes
4) Lowered white blood cell count.
I have none of the previous things, so therefore I have a great chance of living a normal life without the use of medications except for the baby aspirin. He suggested I have a CBC every three months to make sure my other cell counts are normal, and I visit my hematologist every 6 months. This is not hereditary, so my 5 year old will not get it from me. Right now my spleen is fine, but it could enlarge in the future.
After we discussed how the disorder affects me, then we went on to discuss the three miscarriages. He states that with this disorder he has had patients with more than 5 m/c and then went on to have a healthy baby. The risk of having a m/c is 40% with the disorder, and healthy women is only 15-20%. He suggested we just keep trying to conceive without treatment, and have an OB consult as if we were a regular couple having problems. Each of my three m/c have been very different, so it might be from other natural causes and not just the Thrombocytosis. He stated that medication may be beneficial to reduce the chance of m/c if you start on it before you conceive, but there are no studies that prove it is safe to take during pregnancy. He said, “If you were my sister, I would tell you not to take any medications.” That was enough to convince me. :)
I came away from these appointments feeling really good about my understanding of this condition. We have decided to wait at least a year before trying to get pregnant again, since I had two D&C’s in 4 months, and hopefully my body will recover and be strong when we conceive again! If you have any other questions about my appointment I would be happy to try to answer them. Dr. Tefferi often talks to my local Dr. about my disorder so I bet you could have your Dr.’s talk to him as well. He will be releasing his study within the next 3 months, so keep asking your Dr’s if they have read it yet. I’m going to ask my Dr. for a copy too. I might not be able to understand all of it, but it will be nice to have.
I personally am against pill pushing doctors, so I was so releived when he suggested that drugs are not the answer to this dissorder. I hope you guys think long and hard about the consequences before you make any decisions regarding medications. ok....I think I've typed enough for now. :yawn:
Normal people have cells in their bone marrow producing red cells, white cells, and platelets and they are coming from cells A, B, C, D...and so on. Well in our bodies, cell C decided to take over and tell all other cells to stop producing blood cells. This would be ok, except Cell C is mutated and produces too many platelets. Our bodies will adjust to this count, and we have only a slightly greater risk of developing blood clots compared to normal people. The only thing that will increase your risk of developing clots is if you are over the age of 60, or have previously had clots. He did some labs to make sure everything else was normal, and to make sure I didn’t have a genetic disorder that made me allergic to aspirin. He recommended I stay on one baby aspirin per day for the rest of my life. He does not suggest any sort of medication to reduce the platelets since I am otherwise healthy. The side effects of medications would be way worse than the small % chance of blood clots. Over the next 10 years my life expectancy is that of a normal healthy individual. 20 years from now that decreases by 4%, and 30 years by 8%. The reason our life span is shorter is because of the risk of thrombosis and an increased risk of developing leukemia. If your platelets ever decreased on their own, it would be a bad thing, because this would mean your Cell C is shutting down, and you will also be producing less white and red blood cells, this causing leukemia. Of the 4% and 8% of individuals who’s life span was cut short, most of them had at least three of the following:
1) Over the age of 60
2) Smoking
3) Diabetes
4) Lowered white blood cell count.
I have none of the previous things, so therefore I have a great chance of living a normal life without the use of medications except for the baby aspirin. He suggested I have a CBC every three months to make sure my other cell counts are normal, and I visit my hematologist every 6 months. This is not hereditary, so my 5 year old will not get it from me. Right now my spleen is fine, but it could enlarge in the future.
After we discussed how the disorder affects me, then we went on to discuss the three miscarriages. He states that with this disorder he has had patients with more than 5 m/c and then went on to have a healthy baby. The risk of having a m/c is 40% with the disorder, and healthy women is only 15-20%. He suggested we just keep trying to conceive without treatment, and have an OB consult as if we were a regular couple having problems. Each of my three m/c have been very different, so it might be from other natural causes and not just the Thrombocytosis. He stated that medication may be beneficial to reduce the chance of m/c if you start on it before you conceive, but there are no studies that prove it is safe to take during pregnancy. He said, “If you were my sister, I would tell you not to take any medications.” That was enough to convince me. :)
I came away from these appointments feeling really good about my understanding of this condition. We have decided to wait at least a year before trying to get pregnant again, since I had two D&C’s in 4 months, and hopefully my body will recover and be strong when we conceive again! If you have any other questions about my appointment I would be happy to try to answer them. Dr. Tefferi often talks to my local Dr. about my disorder so I bet you could have your Dr.’s talk to him as well. He will be releasing his study within the next 3 months, so keep asking your Dr’s if they have read it yet. I’m going to ask my Dr. for a copy too. I might not be able to understand all of it, but it will be nice to have.
I personally am against pill pushing doctors, so I was so releived when he suggested that drugs are not the answer to this dissorder. I hope you guys think long and hard about the consequences before you make any decisions regarding medications. ok....I think I've typed enough for now. :yawn:
newpup
03-29-2006, 11:18 PM
Hey!
Thanks so much for your very informative post! :) It really makes me feel better about my decision about MY body. (NOT to take the Hydrea)
I'm just curious, but do you live near the Mayo Clinic, or just decided to go?
You just know you got the best info./advice out there. The Mayo Clinic has such a great reputation.
My hematologist is the one who wrote the Rx for Hydrea. I'm not sure if he will continue to be when he finds out I didn't get it filled. :nono:
I'll cross that bridge when I come to it.
Good luck to you in the future. Waiting a year is probably a good idea. It will give your body plenty of time to heal. I waited a year also, after having 2 D&C's within 6 months. It worked for us! TWINS!!!! NO fertility drugs either! So hang in there! ;)
Vickie
newpup
Thanks so much for your very informative post! :) It really makes me feel better about my decision about MY body. (NOT to take the Hydrea)
I'm just curious, but do you live near the Mayo Clinic, or just decided to go?
You just know you got the best info./advice out there. The Mayo Clinic has such a great reputation.
My hematologist is the one who wrote the Rx for Hydrea. I'm not sure if he will continue to be when he finds out I didn't get it filled. :nono:
I'll cross that bridge when I come to it.
Good luck to you in the future. Waiting a year is probably a good idea. It will give your body plenty of time to heal. I waited a year also, after having 2 D&C's within 6 months. It worked for us! TWINS!!!! NO fertility drugs either! So hang in there! ;)
Vickie
newpup
PM73
03-30-2006, 03:45 AM
Thank you so much for your post,Tami! I am so glad you shared that information from Dr.Tefferi with us and I for one will be on a lookout for that study when it comes out although obviously I probably wont understand most of it either... :) However, it is very relieving to know that there is a such a doctor as Dr.Tefferi out there researching this thing.
Also thank you Newpup for telling about your twins, I guess every little thing just gives more hope for the rest of us and congratulations to you! :D
Also thank you Newpup for telling about your twins, I guess every little thing just gives more hope for the rest of us and congratulations to you! :D
Tami3114
03-30-2006, 02:10 PM
I live in Fargo, ND, so Rochester was only a 6 hour drive. After my Doctor said there wasn't much else he could do, he referred me to the Mayo Clinic for a second opinion. Overall there wasn’t much that was done at Mayo except for MORE labs. Aren’t you getting sick of being poked all the time??? The best part was Dr. Tefferi setting our minds at ease knowing I will most likely live a normal healthy life. I’m glad you had a successful pregnancy. It makes me feel better knowing there are people with this disorder having healthy pregnancies. Twins….well I wouldn’t go that far….I’m hoping for just one more but I will definitely take what ever God gives me. :angel:
bomikishell
04-11-2006, 12:16 PM
I too have high platelets and was put on chemo to lower the platelets. When the platelets get up around 600,000 then they put me on chemo. I am on a pill called Busulphan, which is not as popular as others, but the doctor says that the platelets stay down longer, which at one time they stayed down for 18 months. The doctor wanted me to take 3 pills a day, but it killed my stomach, so he went with 1 a day and it worked and I usually took Busulphan for about 3 wks.
Tami3114
04-11-2006, 12:28 PM
I'm not sure if medication is the answer to this problem, and (I know I'm not a doctor, but) I'm not sure if 600 is a high enough number to cause enough alarm to warrent medication. Please review my earlier post about my recent trip to the Mayo Clinic in Rochester where I met with one of the top doctors in the world dealing with high platelets. If you have no other syptoms you may have thrombocytosis and your doctor may wish to contact Dr. Tefferi to discuss your condition. Good luck!
Genessa
04-15-2006, 11:19 PM
Hi!
I was diagnosed about 1 1/2 years ago with (probably), very early stage et, after having a sonogram (to check out my spleen), bm (didn't rule in et, but ruled out other things), and having a slowly rising platelet count.
I used to be a regular blood donor, then went on to donate platelets (aspheresis) where the folks at the blood center would dance and sing at my high (in the 400s) platelet count and take two "bags" at a time. Last time I donated, I got a call from them, telling me my count was too high (low 500s) and I should see my doc.
My internist ordered the sonogram and some more blood work and when sono came back fine and blood work showed elevated platelets still she told me she thought I probably had et, and sent me to the hemotologist. My iron was slightly low, so he put me on a regiment of iron supplements for a month - but while my iron went up, platelets didn't go down. After the bm, they made the tentative dx and I had to keep going back every 6 months for blood work as I was in very early stage (asymptomatic). When I last went to him, he told me not to come back until my internist recommended me again - my platelets were staying in the 500 range. He said I didn't need medication or even aspirin at this point.
Unfortunately for me, platelets have been going up in since then..600s, 700s, and now (4 months later) 900s. Until I can get back to hemotologist, my internist has put me on hydroxyurea 2x a day and one slow release 325 mg aspirin a day, not just because of the high platelet number, but because me slightly elevated blood pressure has gone up significantly. With a grandmother who had two strokes, I'm willing to take the hydroxy at this point...and so far, no side effects...
It was great to find this site, even though it doesn't seem to be heavily visited...Like many of the rest of you, I find some comfort in numbers.
I was diagnosed about 1 1/2 years ago with (probably), very early stage et, after having a sonogram (to check out my spleen), bm (didn't rule in et, but ruled out other things), and having a slowly rising platelet count.
I used to be a regular blood donor, then went on to donate platelets (aspheresis) where the folks at the blood center would dance and sing at my high (in the 400s) platelet count and take two "bags" at a time. Last time I donated, I got a call from them, telling me my count was too high (low 500s) and I should see my doc.
My internist ordered the sonogram and some more blood work and when sono came back fine and blood work showed elevated platelets still she told me she thought I probably had et, and sent me to the hemotologist. My iron was slightly low, so he put me on a regiment of iron supplements for a month - but while my iron went up, platelets didn't go down. After the bm, they made the tentative dx and I had to keep going back every 6 months for blood work as I was in very early stage (asymptomatic). When I last went to him, he told me not to come back until my internist recommended me again - my platelets were staying in the 500 range. He said I didn't need medication or even aspirin at this point.
Unfortunately for me, platelets have been going up in since then..600s, 700s, and now (4 months later) 900s. Until I can get back to hemotologist, my internist has put me on hydroxyurea 2x a day and one slow release 325 mg aspirin a day, not just because of the high platelet number, but because me slightly elevated blood pressure has gone up significantly. With a grandmother who had two strokes, I'm willing to take the hydroxy at this point...and so far, no side effects...
It was great to find this site, even though it doesn't seem to be heavily visited...Like many of the rest of you, I find some comfort in numbers.
rodiamatz
05-05-2006, 08:53 AM
My boyfriend has ET and takes hydroxyurea + aspirin. He gets strong headaches especially after drinking alcohol, could this be related to his condition?
Tami3114
05-05-2006, 12:52 PM
From what I understand, headaches are a common side effect of ET. I'm not sure what the alcohol has to do with it, but since I have been on the asprin my headaches are starting to go away. What was your boyfriends last platelet count? I've heard headaches are worse around the 800-900 range. I haven't had too many headaches since I was in that range last year at this time when I was diagnosed, but now I'm at 1.8million with none. I'm not sure if you read my earlier post about my resent visit to the Mayo clinic, but maybe your boyfriend would be interested in hearing about what I found out about this dissorder. Have a happy sunny weekend!
DONNAX1
05-08-2006, 06:44 PM
:wave: Hi. I wonder if anyone posts here anymore...I'm 27 and I was diagnosed with ET in March of last year. I went in because of a miscarriage, and my platelet count was near one million. Since then it has soared to 1.8 million and I have had two more pregnancy losses. My doctor only has me on a baby asprin. I have had headaches in the past, but since my number has climbed it seems they have went away. I am going to the Mayo Clinic in Rochester next week so hopefully I will find outmore answers. if anyone else still wants to chat about this tha would be great. :)
DONNAX1
05-08-2006, 06:54 PM
HELLO EVERYONE, :angel: I SO GLADE TO READ ABOUT OTHERS THAT ARE LIKE ME.I FEEL SO ALONE MY PLATELET COUNT IS 986000. IAM NOT ON ANY MEDS JUST BABY ASPRIN 81MG A DAY. MY HEMOTOLOGIST DOES NOT WANT TO PUT ME ON MEDS. BUT IAM SO TIRED,I ALSO WENT TO JOHN HOPKINS (NO ANSWERS) IAM REALLY DEPRESSED BECAUSE IAM 35 BUT I NO THIS HAS BEEN A PROBLEM SINCE I WAS AT LEASE 29. SO SSO SAD. PLEASE ANY INFO? :angel: :angel:
Genessa
05-08-2006, 07:50 PM
HELLO EVERYONE, :angel: I SO GLADE TO READ ABOUT OTHERS THAT ARE LIKE ME.I FEEL SO ALONE MY PLATELET COUNT IS 986000. IAM NOT ON ANY MEDS JUST BABY ASPRIN 81MG A DAY. MY HEMOTOLOGIST DOES NOT WANT TO PUT ME ON MEDS. BUT IAM SO TIRED,I ALSO WENT TO JOHN HOPKINS (NO ANSWERS) IAM REALLY DEPRESSED BECAUSE IAM 35 BUT I NO THIS HAS BEEN A PROBLEM SINCE I WAS AT LEASE 29. SO SSO SAD. PLEASE ANY INFO? :angel: :angel:
Hi!
I wanted to tell you I had been really, really exhausted and thought I might be medically depressed - had been tired since December and didn't contribute any of it to ET. Then I was put on hydroxyurea by my internist due to headache and high blood pressure and rising platelets. I have had 5 or 6 really good days since then, where I have energy and feel like doing things and my platelet count has gone down from 975,000 to 600,000. The hemotologist is going to do another count in 2 weeks and adjust the hydra if called for. He said he normally wouldn't have prescribed it for someone my age (47) and not showing any clotting symptoms, but that since it was working, he would keep me on it.
Hi!
I wanted to tell you I had been really, really exhausted and thought I might be medically depressed - had been tired since December and didn't contribute any of it to ET. Then I was put on hydroxyurea by my internist due to headache and high blood pressure and rising platelets. I have had 5 or 6 really good days since then, where I have energy and feel like doing things and my platelet count has gone down from 975,000 to 600,000. The hemotologist is going to do another count in 2 weeks and adjust the hydra if called for. He said he normally wouldn't have prescribed it for someone my age (47) and not showing any clotting symptoms, but that since it was working, he would keep me on it.
hannahsmomlisaw
05-10-2006, 11:22 AM
Hi everyone -
some of you may of seen my post about my daughter, she is 10 mtsh old (I didnt see anyone in the posts that young) with platelets well over the million mark, she also has a ESR rate (sed rate) that is about 6 times the normal high range level.
Just a little history, in March she had the rotavirus and ever since then things have never been the same, she was a cheerful never cry baby, now she wakes up screaming her head off for hours at a time, her development is below normal, it wasnt until her dev was tested at 9 mths by our school systems that I realized she shoudl be doing more things. To top it off these bruises kept appearing along her spine line .. the doctor has said thats not a normal place to get them, and with her blood work is concerned, we are in that waiting game era we have a bone scan scheduled at our childrens hospital on friday i hope she stays well til then we fight sicknesses constantly, they are looking for a few possibilitys, a bone infection, diskitis, or a tumor or malig. so I am a little worried, my little girl for the most part looks okay but you never know, in December/ Jan at 6 mths she was wearing 12 mths, March 18mths, now its May and shes in 12 mths and become very skinny, she doesnt eat well anymore so I am a little worried. Thansk for sharing all your stories .. I wish everyone luck!
some of you may of seen my post about my daughter, she is 10 mtsh old (I didnt see anyone in the posts that young) with platelets well over the million mark, she also has a ESR rate (sed rate) that is about 6 times the normal high range level.
Just a little history, in March she had the rotavirus and ever since then things have never been the same, she was a cheerful never cry baby, now she wakes up screaming her head off for hours at a time, her development is below normal, it wasnt until her dev was tested at 9 mths by our school systems that I realized she shoudl be doing more things. To top it off these bruises kept appearing along her spine line .. the doctor has said thats not a normal place to get them, and with her blood work is concerned, we are in that waiting game era we have a bone scan scheduled at our childrens hospital on friday i hope she stays well til then we fight sicknesses constantly, they are looking for a few possibilitys, a bone infection, diskitis, or a tumor or malig. so I am a little worried, my little girl for the most part looks okay but you never know, in December/ Jan at 6 mths she was wearing 12 mths, March 18mths, now its May and shes in 12 mths and become very skinny, she doesnt eat well anymore so I am a little worried. Thansk for sharing all your stories .. I wish everyone luck!
igorsl
12-05-2007, 11:27 AM
Hello everyone!
I just found this site.
My wife, 43, was diagnosed with ET 6 months ago. She had a bone marrow test which confirmed that. She also has a JAK2 mutation ( I don't know if it's positive or negative). She is getting PegIntron every 14 days.
I see that a lot of people went to the Mayo Clinic to see Dr. Tefferi. Can somebody tell me how to make an appointment to Dr. Tefferi directly? Or we have to see some other doctor before?
Thank you for your help.
I just found this site.
My wife, 43, was diagnosed with ET 6 months ago. She had a bone marrow test which confirmed that. She also has a JAK2 mutation ( I don't know if it's positive or negative). She is getting PegIntron every 14 days.
I see that a lot of people went to the Mayo Clinic to see Dr. Tefferi. Can somebody tell me how to make an appointment to Dr. Tefferi directly? Or we have to see some other doctor before?
Thank you for your help.
sara18
12-13-2007, 03:01 PM
Hi- I have ET also, I am not sure when I posted my other message or what exactly it was about, but I did see Dr. Tefferi myself about a year ago. He was wonderful, extremely helpful and comforting. I would definately recommend him to someone with ET. I can't remember how I contacted him, I think I got the number for the Mayo Clinic from my doctor and called to make the appt. He is usually really booked so you should try to get an appt. asap because you still might need to wait a few months.
Good luck!
Sara
Good luck!
Sara
wlex0297
03-23-2008, 04:06 PM
I have had ET for seven years and have been trated with hydrea and agrylin. I get severe headaches from the meds. My doctor had prescribed tylox for the headaches for two years but recently stoped the tylox becase he does not believe me about the headaches. When I stop taking the hydrea, the headaches go away in about three days. Do you have headaches from the meds or the ET.
Craig
Craig