I'm not a doctor but to provide some input on your question. Hydroxyurea is a chemo oral pill. How I was told is that ET is a "good" blood cancer, because it can be controlled. This chemo oral pill can help control your platelets and keep them at a somewhat normal level. Any underlying issue you might have it will trigger your platelets and can go up, however taking Hydroxyurea it will keep fighting to control your PLT count.
My mother had been taking it for 3 years but over time it started giving her other symptoms that did not make her very happy to the point where she was not eating anymore, fatigue was extreme, 24/7 nausea, and she was just miserable. Also within a year, her bones started to be more fragile and now she is high risk osteoporosis. I think like any medication over time it can onset something else. But because my moms lost appetite, dropping weight, and barely able to get herself up we considered to switch to Jakafi.
I'm sure it's different for many, but this is why I keep close monitor on my mom and track symptoms, because doctors can only do so much. I think doctors should read this forums because patients can provide a better picture of the different symptoms medications cause.
I hope I shed some light into your question. I hope your journey with ET is smooth sailings and keep yourself active, but listen to your body. Be blessed
I don't think it matters if you call it a disease, condition or cancer. As long as you have a good doctor and take prescribed medication, I wouldn't get hung up on the words. I've been on HU for almost 4 years now, my platelets are within normal range.....and I'd rather take HU than get a stroke or heart attack, those are the words that scare me.
I agree with you, I call it a blood disorder, i just hate the cancer word. I have been on HU since October PLT went up to 1000 after I had my covid vaccine, my platelets have been down for the last 3 blood draws now at 333 I feel back to my old self with lots of energy and wanting to run again. I take 1500 of Hydrae a day, aspirin not every day. I feel much better i just have the problem with my feet like pens sticking in them some nights. I just wonder if I will ever stop worrying about this blood disorder and where I will go from here. I have not told anyone of this issue as I do not want my children to worry as they loss their father 4 years ago to a stroke.
I agree with you, I call it a blood disorder, i just hate the cancer word. I have been on HU since October PLT went up to 1000 after I had my covid vaccine, my platelets have been down for the last 3 blood draws now at 333 I feel back to my old self with lots of energy and wanting to run again. I take 1500 of Hydrae a day, aspirin not every day. I feel much better i just have the problem with my feet like pens sticking in them some nights. I just wonder if I will ever stop worrying about this blood disorder and where I will go from here. I have not told anyone of this issue as I do not want my children to worry as they loss their father 4 years ago to a stroke.
I agree with you, I call it a blood disorder, i just hate the cancer word. I have been on HU since October PLT went up to 1000 after I had my covid vaccine, my platelets have been down for the last 3 blood draws now at 333 I feel back to my old self with lots of energy and wanting to run again. I take 1500 of Hydrae a day, aspirin not every day. I feel much better i just have the problem with my feet like pens sticking in them some nights. I just wonder if I will ever stop worrying about this blood disorder and where I will go from here. I have not told anyone of this issue as I do not want my children to worry as they loss their father 4 years ago to a stroke.
You might want to tell your family when the time is right. I told my son and brother to keep an eye on their platelets. The driver mutation isn't inherited, but researchers think a tendency to mutate may be. There are "family clusters" of the disease. I have ET, Dad had it.
Great to hear you are feeling better! I find that my stationary bike helps with foot pins and needles and tingling in fingers. Anything that gets your blood circulating helps. Happy running!
Ask what alternatives there are to taking HU.
Is it hereditary, have seen some on here, saying their father had it and also one who said she was third generation. Have been told it isn't . Let me know what they say if you ask please.
My mother had polycythemia Vera in the 1990's. She had it for about 10 years and died at the turn of 2000 at age 87 of an unrelated problem. I was diagnosed with thrombocythemia almost a year ago. Just before I had a lot of stress with my husband with COVID shot killing his kidneys, a heart valve just put in and then months later , trying to recoup, had hernia bleeding on top of blood clots. I only slept 2 hours at a time, being completely stressed. He died on my birthday. I ended up getting pneumonia without having any breathing problems, only liver really hurting. After that I got thrombocythemia verdict. My numbers weren't coming down. Did the bone marrow biopsy and had JAK2. My nephew has the slow moving leukemia. He just started chemo. Guess there is a new drug that can solve his problem. Yes, I would say this malady can be inherited.
I agree with you, I call it a blood disorder, i just hate the cancer word. I have been on HU since October PLT went up to 1000 after I had my covid vaccine, my platelets have been down for the last 3 blood draws now at 333 I feel back to my old self with lots of energy and wanting to run again. I take 1500 of Hydrae a day, aspirin not every day. I feel much better i just have the problem with my feet like pens sticking in them some nights. I just wonder if I will ever stop worrying about this blood disorder and where I will go from here. I have not told anyone of this issue as I do not want my children to worry as they loss their father 4 years ago to a stroke.
It is a nasty word, isn’t it. Call it whatever makes you feel more in control of things.
I take 1000 mg HU daily for PV for the last 5 years or so.
I have numbness in my feet and legs up to about mid calf. For maybe the last 6-8 months I have been getting weird sharp pains and what I think must be Restless Leg Syndrome.
I received a gift of peppermint tea at Christmas. I had never had it before. One night a couple of months ago I decided to try it and dropped some pieces of crystallized ginger in it to sweeten it up. After a week of the tea I realized my legs weren’t bothering me as much at night. I’ve kept up that nightly cup of peppermint tea with ginger and it is, I think, helping the pains in my legs and making it easier to fall asleep. Just an idea for you.
I am sorry for your and your children’s loss.
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Oh, yes, 5 minutes on one of these forums would teach a doctor a LOT about what patients face. I agree whole-heartedly!
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8 ReactionsI don't think it matters if you call it a disease, condition or cancer. As long as you have a good doctor and take prescribed medication, I wouldn't get hung up on the words. I've been on HU for almost 4 years now, my platelets are within normal range.....and I'd rather take HU than get a stroke or heart attack, those are the words that scare me.
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8 ReactionsI agree with you, I call it a blood disorder, i just hate the cancer word. I have been on HU since October PLT went up to 1000 after I had my covid vaccine, my platelets have been down for the last 3 blood draws now at 333 I feel back to my old self with lots of energy and wanting to run again. I take 1500 of Hydrae a day, aspirin not every day. I feel much better i just have the problem with my feet like pens sticking in them some nights. I just wonder if I will ever stop worrying about this blood disorder and where I will go from here. I have not told anyone of this issue as I do not want my children to worry as they loss their father 4 years ago to a stroke.
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7 ReactionsYou're so brave, Jennifer. I am so sorry about the tragic loss of your children's father.
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2 ReactionsYou might want to tell your family when the time is right. I told my son and brother to keep an eye on their platelets. The driver mutation isn't inherited, but researchers think a tendency to mutate may be. There are "family clusters" of the disease. I have ET, Dad had it.
Great to hear you are feeling better! I find that my stationary bike helps with foot pins and needles and tingling in fingers. Anything that gets your blood circulating helps. Happy running!
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Like -
Helpful -
Hug
1 ReactionMy mother had polycythemia Vera in the 1990's. She had it for about 10 years and died at the turn of 2000 at age 87 of an unrelated problem. I was diagnosed with thrombocythemia almost a year ago. Just before I had a lot of stress with my husband with COVID shot killing his kidneys, a heart valve just put in and then months later , trying to recoup, had hernia bleeding on top of blood clots. I only slept 2 hours at a time, being completely stressed. He died on my birthday. I ended up getting pneumonia without having any breathing problems, only liver really hurting. After that I got thrombocythemia verdict. My numbers weren't coming down. Did the bone marrow biopsy and had JAK2. My nephew has the slow moving leukemia. He just started chemo. Guess there is a new drug that can solve his problem. Yes, I would say this malady can be inherited.
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Like -
Helpful -
Hug
3 ReactionsIt is a nasty word, isn’t it. Call it whatever makes you feel more in control of things.
I take 1000 mg HU daily for PV for the last 5 years or so.
I have numbness in my feet and legs up to about mid calf. For maybe the last 6-8 months I have been getting weird sharp pains and what I think must be Restless Leg Syndrome.
I received a gift of peppermint tea at Christmas. I had never had it before. One night a couple of months ago I decided to try it and dropped some pieces of crystallized ginger in it to sweeten it up. After a week of the tea I realized my legs weren’t bothering me as much at night. I’ve kept up that nightly cup of peppermint tea with ginger and it is, I think, helping the pains in my legs and making it easier to fall asleep. Just an idea for you.
I am sorry for your and your children’s loss.