Living with ET

This diagnosis and the "c" word can be quite a bit to digest! I was diagnosed in April for ET at age 77 with a platelet count of 581k ane a JAK2-positive test. No bone marrow biopsy was done. My PCP referred me to a hematologist/oncologist. I'll share what the specialist told me.

He said they don't know what causes ET nor how to prevent it. He said I was not born with this and it is not hereditary (which was a relief, as I have three adult children). They don't know what caused the JAK gene mutation nor how to prevent it. He said he prefers to call ET a blood disorder rather than a cancer. He said if my platelet count gets above 600k he will prescribe a chemo pill for me, presumably HU. He said my age (well over 65) puts me at extra risk for blood clots that can cause strokes and heart attacks. My family history has a lot of heart attacks, too, although I've not had a blood clot. He put me on a coated low-dose 81mg aspirin a day at my first visit and I continue to take that. He said this makes the platelets more slippery and less likely to form clots. The main danger from ET is blood clots that could be disabling or fatal (stroke, heart attack, blood clot to lungs).

More personal details; can skip if desired:
As my platelets have been steadily increasing for several years, I thought yesterday's appointment would show a count of over 600k and he'd want to start the chemo pill, but thank the good Lord my count had dropped to 540-something-k! I don't know why else, because it's never dropped any before. I've got to have cataract surgery in Nov. and Dec., and I'm one who doesn't like to do more than one thing to my body at a time, so I was VERY relieved about the blood test numbers. (I really don't like doing anything to my body or taking any meds, but often that's not possible.) Hopefully, I will be okay at least until January when I go for my next checkup. I'll face whatever comes at that time with the Lord's help. For now I'm just relieved and thankful to not have to go on the chemo pill.

I say all this to encourage you to try to remain positive. The specialist also told me at my first visit to not be dismayed at hearing "chemo pill," because most people tolerate it well, without throwing up or losing their hair. He was very positive and encouraging to me about this disease. I think it's technically a cancer because the blood cells grow and divide too much, but it's thankfully not a cancer that spreads to other parts of our body. We're calling it a "blood disorder." He said it rarely can turn into leukemia, but that usually does not happen, and if it ever does, they'll treat that then.

I am NO doctor, but my only possible question about your doctor is that he seems to be pushing HU with your platelet count at what it is and your age so young. You might want to discuss the reasons with him or even seek a second opinion. Maybe there are other factors; idk. My hem/oncologist implied that I would need a chemo pill at a count over 600k because my age puts me at extra risk for blood clots. Again, right now he only has me on a low-dose aspirin every day, and that was at a count of 581k platelets and me being at higher risk for clots. I certainly don't want to go on a chemo pill before I have to, and I don't blame you for not wanting to, either.

From what I've read about ET, most people have an average life span. I'm not thrilled with my diagnosis, but I know it could be much worse, and I'm thankful there are effective, relatively safe treatments. My faith in God is a great comfort to me as well. I'm a widow who lives alone, so I'm also thankful you have a good husband to be with you. You are in my prayers for strength, healing, comfort, and increased faith. Hang in there! I've read quite a few posts by people who have had ET for decades and are still doing well. Of course my age makes it easier for me to accept, but I am hopeful you will have a normal lifespan and ET will not cause you undue problems.

Forums such as this one have also been helpful to me. There are several ET discussions here so check some of the others out, too.

Sorry so wordy; I'm on a laptop and I'm a fast typist, LOL.

God bless you and please keep us posted.

This diagnosis and the "c" word can be quite a bit to digest! I was diagnosed in April for ET at age 77 with a platelet count of 581k ane a JAK2-positive test. No bone marrow biopsy was done. My PCP referred me to a hematologist/oncologist. I'll share what the specialist told me.

He said they don't know what causes ET nor how to prevent it. He said I was not born with this and it is not hereditary (which was a relief, as I have three adult children). They don't know what caused the JAK gene mutation nor how to prevent it. He said he prefers to call ET a blood disorder rather than a cancer. He said if my platelet count gets above 600k he will prescribe a chemo pill for me, presumably HU. He said my age (well over 65) puts me at extra risk for blood clots that can cause strokes and heart attacks. My family history has a lot of heart attacks, too, although I've not had a blood clot. He put me on a coated low-dose 81mg aspirin a day at my first visit and I continue to take that. He said this makes the platelets more slippery and less likely to form clots. The main danger from ET is blood clots that could be disabling or fatal (stroke, heart attack, blood clot to lungs).

More personal details; can skip if desired:
As my platelets have been steadily increasing for several years, I thought yesterday's appointment would show a count of over 600k and he'd want to start the chemo pill, but thank the good Lord my count had dropped to 540-something-k! I don't know why else, because it's never dropped any before. I've got to have cataract surgery in Nov. and Dec., and I'm one who doesn't like to do more than one thing to my body at a time, so I was VERY relieved about the blood test numbers. (I really don't like doing anything to my body or taking any meds, but often that's not possible.) Hopefully, I will be okay at least until January when I go for my next checkup. I'll face whatever comes at that time with the Lord's help. For now I'm just relieved and thankful to not have to go on the chemo pill.

I say all this to encourage you to try to remain positive. The specialist also told me at my first visit to not be dismayed at hearing "chemo pill," because most people tolerate it well, without throwing up or losing their hair. He was very positive and encouraging to me about this disease. I think it's technically a cancer because the blood cells grow and divide too much, but it's thankfully not a cancer that spreads to other parts of our body. We're calling it a "blood disorder." He said it rarely can turn into leukemia, but that usually does not happen, and if it ever does, they'll treat that then.

I am NO doctor, but my only possible question about your doctor is that he seems to be pushing HU with your platelet count at what it is and your age so young. You might want to discuss the reasons with him or even seek a second opinion. Maybe there are other factors; idk. My hem/oncologist implied that I would need a chemo pill at a count over 600k because my age puts me at extra risk for blood clots. Again, right now he only has me on a low-dose aspirin every day, and that was at a count of 581k platelets and me being at higher risk for clots. I certainly don't want to go on a chemo pill before I have to, and I don't blame you for not wanting to, either.

From what I've read about ET, most people have an average life span. I'm not thrilled with my diagnosis, but I know it could be much worse, and I'm thankful there are effective, relatively safe treatments. My faith in God is a great comfort to me as well. I'm a widow who lives alone, so I'm also thankful you have a good husband to be with you. You are in my prayers for strength, healing, comfort, and increased faith. Hang in there! I've read quite a few posts by people who have had ET for decades and are still doing well. Of course my age makes it easier for me to accept, but I am hopeful you will have a normal lifespan and ET will not cause you undue problems.

Forums such as this one have also been helpful to me. There are several ET discussions here so check some of the others out, too.

Sorry so wordy; I'm on a laptop and I'm a fast typist, LOL.

God bless you and please keep us posted.

This diagnosis and the "c" word can be quite a bit to digest! I was diagnosed in April for ET at age 77 with a platelet count of 581k ane a JAK2-positive test. No bone marrow biopsy was done. My PCP referred me to a hematologist/oncologist. I'll share what the specialist told me.

He said they don't know what causes ET nor how to prevent it. He said I was not born with this and it is not hereditary (which was a relief, as I have three adult children). They don't know what caused the JAK gene mutation nor how to prevent it. He said he prefers to call ET a blood disorder rather than a cancer. He said if my platelet count gets above 600k he will prescribe a chemo pill for me, presumably HU. He said my age (well over 65) puts me at extra risk for blood clots that can cause strokes and heart attacks. My family history has a lot of heart attacks, too, although I've not had a blood clot. He put me on a coated low-dose 81mg aspirin a day at my first visit and I continue to take that. He said this makes the platelets more slippery and less likely to form clots. The main danger from ET is blood clots that could be disabling or fatal (stroke, heart attack, blood clot to lungs).

More personal details; can skip if desired:
As my platelets have been steadily increasing for several years, I thought yesterday's appointment would show a count of over 600k and he'd want to start the chemo pill, but thank the good Lord my count had dropped to 540-something-k! I don't know why else, because it's never dropped any before. I've got to have cataract surgery in Nov. and Dec., and I'm one who doesn't like to do more than one thing to my body at a time, so I was VERY relieved about the blood test numbers. (I really don't like doing anything to my body or taking any meds, but often that's not possible.) Hopefully, I will be okay at least until January when I go for my next checkup. I'll face whatever comes at that time with the Lord's help. For now I'm just relieved and thankful to not have to go on the chemo pill.

I say all this to encourage you to try to remain positive. The specialist also told me at my first visit to not be dismayed at hearing "chemo pill," because most people tolerate it well, without throwing up or losing their hair. He was very positive and encouraging to me about this disease. I think it's technically a cancer because the blood cells grow and divide too much, but it's thankfully not a cancer that spreads to other parts of our body. We're calling it a "blood disorder." He said it rarely can turn into leukemia, but that usually does not happen, and if it ever does, they'll treat that then.

I am NO doctor, but my only possible question about your doctor is that he seems to be pushing HU with your platelet count at what it is and your age so young. You might want to discuss the reasons with him or even seek a second opinion. Maybe there are other factors; idk. My hem/oncologist implied that I would need a chemo pill at a count over 600k because my age puts me at extra risk for blood clots. Again, right now he only has me on a low-dose aspirin every day, and that was at a count of 581k platelets and me being at higher risk for clots. I certainly don't want to go on a chemo pill before I have to, and I don't blame you for not wanting to, either.

From what I've read about ET, most people have an average life span. I'm not thrilled with my diagnosis, but I know it could be much worse, and I'm thankful there are effective, relatively safe treatments. My faith in God is a great comfort to me as well. I'm a widow who lives alone, so I'm also thankful you have a good husband to be with you. You are in my prayers for strength, healing, comfort, and increased faith. Hang in there! I've read quite a few posts by people who have had ET for decades and are still doing well. Of course my age makes it easier for me to accept, but I am hopeful you will have a normal lifespan and ET will not cause you undue problems.

Forums such as this one have also been helpful to me. There are several ET discussions here so check some of the others out, too.

Sorry so wordy; I'm on a laptop and I'm a fast typist, LOL.

God bless you and please keep us posted.