Hi, I am new to this group. I just found it. I have been diagnosed ET/ JAK2 last spring 2025. My platelets have been gradually going up since summer 2021, but not too much attention has been given to it. I am on Plavix instead of aspirin and I just started HU 500mg and in the latest test my platelets were 730. I have not had a bone marrow biopsy yet. My new hematologist brought it up. Is it a standard thing to have to have that biopsy? She also talked about Myelofibrosis, scarring in the bone marrow, enlarged spleen and the ultrasound of the spleen. Are all of these things inevitable?
I have been feeling OK. So it is difficult to digest that so much is wrong with me.
- Hipsu5
With ET you may experience few symptoms or lots of them. It is very individual I recommend bone marrow biopsy with NGS analysis then you will have a better idea of the condition of your bone marrow biopsy. Most ET patients do not see progression to MF or AMl, but some do and that is something to monitor. There is a lot of educational material out there about that. Best wishes.
Hi, I am new to this group. I just found it. I have been diagnosed ET/ JAK2 last spring 2025. My platelets have been gradually going up since summer 2021, but not too much attention has been given to it. I am on Plavix instead of aspirin and I just started HU 500mg and in the latest test my platelets were 730. I have not had a bone marrow biopsy yet. My new hematologist brought it up. Is it a standard thing to have to have that biopsy? She also talked about Myelofibrosis, scarring in the bone marrow, enlarged spleen and the ultrasound of the spleen. Are all of these things inevitable?
I have been feeling OK. So it is difficult to digest that so much is wrong with me.
- Hipsu5
Hi, I am new to this group. I just found it. I have been diagnosed ET/ JAK2 last spring 2025. My platelets have been gradually going up since summer 2021, but not too much attention has been given to it. I am on Plavix instead of aspirin and I just started HU 500mg and in the latest test my platelets were 730. I have not had a bone marrow biopsy yet. My new hematologist brought it up. Is it a standard thing to have to have that biopsy? She also talked about Myelofibrosis, scarring in the bone marrow, enlarged spleen and the ultrasound of the spleen. Are all of these things inevitable?
I have been feeling OK. So it is difficult to digest that so much is wrong with me.
- Hipsu5
Hi I had a similar situation, the platelets rising and jak2 in 2021 and they started me on HU similarly. I did have a biopsy early on I guess to rule out other things. But it seemed to damage my back or periformis causing me chronic sciatic pain on the side of the biopsy when I walk. I have had back problems in the past but never sciatic pain before. Can't hike anymore. The Cleveland clinic Dr. I had a recent consult with said they used a decades old procedure in doing the biopsy and not good results. So not sure if it is needed for you at this point, but if you have one make sure it is at a place that is highly rated and the most recent technology. I may need another at some point but not sure.
With ET, until recently and other than the biopsy causing issues, I haven't had much of any side effects. After almost 4 years now my other cells are increasing and we have been increasing HU and I am starting to have more side effects like fatigue and nail pits and breakage. I also recently had superficial vein clot (went off aspirin a week for a back epidural, maybe that was the cause).
I am told that the hematocrit reading being too high is most likely to cause clots and they like to keep it under 45. Cleveland Clinic also likes to have NGS myeloid panel to investigate other possible gene defects that can help determine the diagnoses. United Healthcare denied but just allowed on appeal (without insurance at labcorp cost is about $4,400). No results yet.
I didn't have an ultrasound of the spleen initially but a year later with a new hematologist we did. It's cheap and easy, I think it's a good idea to get a baseline to see if it increases in future. My gastro Dr. says it can't be palpated, but hematologist says can if it gets to be significantly large I guess. It seems like most people live long and don't have a lot of issues with ET but it can also morph into other things. I think that is what these tests are for , to make sure not other things that might require more aggressive treatment. Diagnoses don't seem to be cut and dried.
I guess for BMB ask what they hope it will accomplish and how important at this point. I think it is mainly to look for scarring again pointing to diagnosis and prognosis? I don't think most people have issues with BMB like I seem to have had.
Hi, I am new to this group. I just found it. I have been diagnosed ET/ JAK2 last spring 2025. My platelets have been gradually going up since summer 2021, but not too much attention has been given to it. I am on Plavix instead of aspirin and I just started HU 500mg and in the latest test my platelets were 730. I have not had a bone marrow biopsy yet. My new hematologist brought it up. Is it a standard thing to have to have that biopsy? She also talked about Myelofibrosis, scarring in the bone marrow, enlarged spleen and the ultrasound of the spleen. Are all of these things inevitable?
I have been feeling OK. So it is difficult to digest that so much is wrong with me.
- Hipsu5
@colleenyoung
Hi Colleen, thank you for asking. I think my doctor's office is on vacation through January. I had a tele-meeting with her just before Christmas. She said she would like to schedule the BM biopsy, but it would be at the end of January. I also have an ultrasound of the abdomen scheduled for the end of January. She said I can continue with the HU according to the original prescription of 5 days on 2 days off, or I can take it seven days. I first thought I would take it 7 days in order to lower the platelet count faster, but then I decided to continue 5 days, because I don't really have had any bad reactions from platelets.
After starting HU I sometimes have mild nausea, headache in the morning when I wake up, but it goes away on its own. Last couple of days when I wiped my nose I have seen some spots of blood in the Kleenex. I don't know if it is caused by HU, but it has not happened before. I do use Latanoprost drops in my eyes every night to control eye pressure and also I have to take plavix every day instead of aspirin. My husband mentioned that it looks like my hair is thinning a little.
I am feeling OK otherwise.
Hipsu
@colleenyoung
Hi Colleen, thank you for asking. I think my doctor's office is on vacation through January. I had a tele-meeting with her just before Christmas. She said she would like to schedule the BM biopsy, but it would be at the end of January. I also have an ultrasound of the abdomen scheduled for the end of January. She said I can continue with the HU according to the original prescription of 5 days on 2 days off, or I can take it seven days. I first thought I would take it 7 days in order to lower the platelet count faster, but then I decided to continue 5 days, because I don't really have had any bad reactions from platelets.
After starting HU I sometimes have mild nausea, headache in the morning when I wake up, but it goes away on its own. Last couple of days when I wiped my nose I have seen some spots of blood in the Kleenex. I don't know if it is caused by HU, but it has not happened before. I do use Latanoprost drops in my eyes every night to control eye pressure and also I have to take plavix every day instead of aspirin. My husband mentioned that it looks like my hair is thinning a little.
I am feeling OK otherwise.
Hipsu
@hipsu5 I noticed some nose bleeds etc after starting on HU. Eventually I realized that it was a sign my platelets were normalizing after being so high. I was very used to not bleeding at all.
Hi. I started Hydrea 500 for 7 days 6 months ago.
Fatigue, metal taste, nausea, and vision changes, mild hair thinning, and chills. My platelets went from 900s to 480.
My oncologist recently reduced my dosage to 5 days. I’m hoping some of my side affects will change.
@colleenyoung
I have now a date for my BMB. It is scheduled on February 9th and then my follow up with the doctor is March 9.
I had a blood test on Monday Jan. 12. There wasn't too much change yet.
Oct. 9: platelets 705, RDW 15.0
Dec. 4: platelets 776, RDW-CV 14.9 ----> started HU on Dec. 7
Dec. 18: platelets 730, RDW 15.3
Jan. 12: platelets 633, RDW-CV 16.2
My next blood draw is Jan. 26, 2026.
I posted today also in Diabetes & Endocrine System Support Group, because a CT scan Jan. 2025 revealed that I have some nodules in my thyroid. I finally got an ultrasound and biopsy in December. The biopsy result was 'Nondiagnostic'.
- Hipsu 🙂
@colleenyoung
I have now a date for my BMB. It is scheduled on February 9th and then my follow up with the doctor is March 9.
I had a blood test on Monday Jan. 12. There wasn't too much change yet.
Oct. 9: platelets 705, RDW 15.0
Dec. 4: platelets 776, RDW-CV 14.9 ----> started HU on Dec. 7
Dec. 18: platelets 730, RDW 15.3
Jan. 12: platelets 633, RDW-CV 16.2
My next blood draw is Jan. 26, 2026.
I posted today also in Diabetes & Endocrine System Support Group, because a CT scan Jan. 2025 revealed that I have some nodules in my thyroid. I finally got an ultrasound and biopsy in December. The biopsy result was 'Nondiagnostic'.
- Hipsu 🙂
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Hi, I am new to this group. I just found it. I have been diagnosed ET/ JAK2 last spring 2025. My platelets have been gradually going up since summer 2021, but not too much attention has been given to it. I am on Plavix instead of aspirin and I just started HU 500mg and in the latest test my platelets were 730. I have not had a bone marrow biopsy yet. My new hematologist brought it up. Is it a standard thing to have to have that biopsy? She also talked about Myelofibrosis, scarring in the bone marrow, enlarged spleen and the ultrasound of the spleen. Are all of these things inevitable?
I have been feeling OK. So it is difficult to digest that so much is wrong with me.
- Hipsu5
-
Like -
Helpful -
Hug
4 ReactionsWith ET you may experience few symptoms or lots of them. It is very individual I recommend bone marrow biopsy with NGS analysis then you will have a better idea of the condition of your bone marrow biopsy. Most ET patients do not see progression to MF or AMl, but some do and that is something to monitor. There is a lot of educational material out there about that. Best wishes.
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Helpful -
Hug
4 Reactions@hipsu5
A diagnosis of ET lands like a ton of bricks.
Scary things are NOT inevitable!
By taking Plavix and HU, you're off to a great start.
So sorry you have ET, but so glad you've found this forum!
Ask a million questions. Someone here will have experience to share.
You are not alone!
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3 Reactions@hipsu5
Hi I had a similar situation, the platelets rising and jak2 in 2021 and they started me on HU similarly. I did have a biopsy early on I guess to rule out other things. But it seemed to damage my back or periformis causing me chronic sciatic pain on the side of the biopsy when I walk. I have had back problems in the past but never sciatic pain before. Can't hike anymore. The Cleveland clinic Dr. I had a recent consult with said they used a decades old procedure in doing the biopsy and not good results. So not sure if it is needed for you at this point, but if you have one make sure it is at a place that is highly rated and the most recent technology. I may need another at some point but not sure.
With ET, until recently and other than the biopsy causing issues, I haven't had much of any side effects. After almost 4 years now my other cells are increasing and we have been increasing HU and I am starting to have more side effects like fatigue and nail pits and breakage. I also recently had superficial vein clot (went off aspirin a week for a back epidural, maybe that was the cause).
I am told that the hematocrit reading being too high is most likely to cause clots and they like to keep it under 45. Cleveland Clinic also likes to have NGS myeloid panel to investigate other possible gene defects that can help determine the diagnoses. United Healthcare denied but just allowed on appeal (without insurance at labcorp cost is about $4,400). No results yet.
I didn't have an ultrasound of the spleen initially but a year later with a new hematologist we did. It's cheap and easy, I think it's a good idea to get a baseline to see if it increases in future. My gastro Dr. says it can't be palpated, but hematologist says can if it gets to be significantly large I guess. It seems like most people live long and don't have a lot of issues with ET but it can also morph into other things. I think that is what these tests are for , to make sure not other things that might require more aggressive treatment. Diagnoses don't seem to be cut and dried.
I guess for BMB ask what they hope it will accomplish and how important at this point. I think it is mainly to look for scarring again pointing to diagnosis and prognosis? I don't think most people have issues with BMB like I seem to have had.
Tammy, 63 ET diagnosis since late 2021
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6 Reactions@hipsu5, have you had further testing in the meantime? How are you doing? Any update?
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1 Reaction@colleenyoung
Hi Colleen, thank you for asking. I think my doctor's office is on vacation through January. I had a tele-meeting with her just before Christmas. She said she would like to schedule the BM biopsy, but it would be at the end of January. I also have an ultrasound of the abdomen scheduled for the end of January. She said I can continue with the HU according to the original prescription of 5 days on 2 days off, or I can take it seven days. I first thought I would take it 7 days in order to lower the platelet count faster, but then I decided to continue 5 days, because I don't really have had any bad reactions from platelets.
After starting HU I sometimes have mild nausea, headache in the morning when I wake up, but it goes away on its own. Last couple of days when I wiped my nose I have seen some spots of blood in the Kleenex. I don't know if it is caused by HU, but it has not happened before. I do use Latanoprost drops in my eyes every night to control eye pressure and also I have to take plavix every day instead of aspirin. My husband mentioned that it looks like my hair is thinning a little.
I am feeling OK otherwise.
Hipsu
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Like -
Helpful -
Hug
4 Reactions@hipsu5 I noticed some nose bleeds etc after starting on HU. Eventually I realized that it was a sign my platelets were normalizing after being so high. I was very used to not bleeding at all.
-
Like -
Helpful -
Hug
3 ReactionsHi. I started Hydrea 500 for 7 days 6 months ago.
Fatigue, metal taste, nausea, and vision changes, mild hair thinning, and chills. My platelets went from 900s to 480.
My oncologist recently reduced my dosage to 5 days. I’m hoping some of my side affects will change.
-
Like -
Helpful -
Hug
5 Reactions@colleenyoung
I have now a date for my BMB. It is scheduled on February 9th and then my follow up with the doctor is March 9.
I had a blood test on Monday Jan. 12. There wasn't too much change yet.
Oct. 9: platelets 705, RDW 15.0
Dec. 4: platelets 776, RDW-CV 14.9 ----> started HU on Dec. 7
Dec. 18: platelets 730, RDW 15.3
Jan. 12: platelets 633, RDW-CV 16.2
My next blood draw is Jan. 26, 2026.
I posted today also in Diabetes & Endocrine System Support Group, because a CT scan Jan. 2025 revealed that I have some nodules in my thyroid. I finally got an ultrasound and biopsy in December. The biopsy result was 'Nondiagnostic'.
- Hipsu 🙂
-
Like -
Helpful -
Hug
2 Reactions@hipsu5
Oh boy, you have a lot going on. I am so sorry.
To me an encouraging note is: the HU brought your platelet count down in just one month. Progress!
Please be kind to yourself at this challenging time.
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3 Reactions