@janemc thanks so much for your thoughtful reply for sure I hope to hear from someone with the same experience of the bone marrow results, I was told it wasn’t bad news or good news but medium news whatever that entails I’m losing faith in doctors communicating results in non medical speak but hopefully someone can give me a clearer explanation of my results just to put my mind at ease and to stop overthinking everything my thoughts and prayers are with everyone going through complicated medical issues 🙏
@janemc thanks so much for your thoughtful reply for sure I hope to hear from someone with the same experience of the bone marrow results, I was told it wasn’t bad news or good news but medium news whatever that entails I’m losing faith in doctors communicating results in non medical speak but hopefully someone can give me a clearer explanation of my results just to put my mind at ease and to stop overthinking everything my thoughts and prayers are with everyone going through complicated medical issues 🙏
@janemc hi. I have ET triple negative. I also have some “scarring” or fibrosis. I think I am a 1 or maybe 1+. It is uncommon to have fibrosis with ET I am told, but a low level of fibrosis is not alarming. Also, keep in mind that a bone marrow sample is a localized sample, the character of your bone marrow elsewhere may be different. I appreciate that all this is worrisome because we don’t know how this will turn out, but try not to let it take over. That is no help either. Sorry your bone marrow biopsy was so painful. I am taking HU, 500 mg daily. It took awhile, but it brought my platelets down and I actually feel better. My symptoms are less now than before treatment. The symptoms took longer to improve than the platelet number. In the order of 6 months or so. Hang in there and remember there are other treatments if you cannot tolerate HU.
@janemc hi. I have ET triple negative. I also have some “scarring” or fibrosis. I think I am a 1 or maybe 1+. It is uncommon to have fibrosis with ET I am told, but a low level of fibrosis is not alarming. Also, keep in mind that a bone marrow sample is a localized sample, the character of your bone marrow elsewhere may be different. I appreciate that all this is worrisome because we don’t know how this will turn out, but try not to let it take over. That is no help either. Sorry your bone marrow biopsy was so painful. I am taking HU, 500 mg daily. It took awhile, but it brought my platelets down and I actually feel better. My symptoms are less now than before treatment. The symptoms took longer to improve than the platelet number. In the order of 6 months or so. Hang in there and remember there are other treatments if you cannot tolerate HU.
I had no pain at all I live in Virginia they sent me to Roanoke because our local hospital had the old way of doing the biopsy so they send everyone to Roanoke. They were very clear about what they were doing and explained everything. I was put on my stomach in a CT scanner this was to pin point the location they wanted. After the table went in and out a couple of times I went to sleep and didn't know anything until they woke me up after I was on my back ready to go to my room. They kept me a couple of hours and did frequent checks to make sure there was no bleeding then sent me home. I live a hour away but I never had any pain at all. They mark your back where they want to do the procedure so my mark just above my butt center in the middle of my back. Please don't worry all the waiting before and the 2 to 3 weeks waiting on results was a lot harder than the procedure. Sorry this is so long wanted to give you a clear picture. Just be sure that you are put to sleep or sedated. It is know big deal Good Luck
@vickieannb57
I asked the hospital to explain how the BMB procedure is done. I received a short brochure.
*** What happens during the procedure? ***
"You will lie on your stomach or side, and the procedure site will be numbed with a local anesthetic. This will not make you sleepy or feel any different.
After the anesthetic takes effect, a clinician such as a doctor, advanced practice provider (nurse practitioner or physician’s assistant), or nurse will insert a needle into your bone and remove the sample of marrow and/or bone.
You may feel some discomfort such as a “pulling” feeling while the sample is being taken. The procedure takes about 20 to 30 minutes."
*** Will I be awake during the procedure? ***
"You may be prescribed a sedative to take by mouth before the procedure or given a sedative intravenously (IV) during the procedure. This medication will help you relax and decrease discomfort."
*** How much bone marrow will get taken? ***
"For a bone marrow aspiration, your clinician will take about 1 to 2 teaspoons of bone marrow. For a bone marrow biopsy, another sample of marrow will be taken immediately after the bone marrow aspiration using a new needle through the same puncture site. Your clinician will also take a piece of bone that is about ½ to ¾ of an inch long and about the thickness of a pencil
lead."
*** Will I be in pain after the procedure? ***
"You may experience some discomfort after the local anesthetic has worn off. You can apply an ice pack to the site for 20 minutes, 2 to 3 times a day if it is tender. Walking may also help your discomfort. If the pain continues to bother you, contact your care team."
----------------------------------------------------
Is this procedure old or new way? This doesn't mention anything about a drill or CT-scanner. My doctor did mention that I would have similar sedation as when they do a colonoscopy.
I am starting to feel doubtful and reluctant to have the BMB. Do I really need it? I will read all the doctors' comments and results carefully.
- Hipsu **
@vickieannb57
I asked the hospital to explain how the BMB procedure is done. I received a short brochure.
*** What happens during the procedure? ***
"You will lie on your stomach or side, and the procedure site will be numbed with a local anesthetic. This will not make you sleepy or feel any different.
After the anesthetic takes effect, a clinician such as a doctor, advanced practice provider (nurse practitioner or physician’s assistant), or nurse will insert a needle into your bone and remove the sample of marrow and/or bone.
You may feel some discomfort such as a “pulling” feeling while the sample is being taken. The procedure takes about 20 to 30 minutes."
*** Will I be awake during the procedure? ***
"You may be prescribed a sedative to take by mouth before the procedure or given a sedative intravenously (IV) during the procedure. This medication will help you relax and decrease discomfort."
*** How much bone marrow will get taken? ***
"For a bone marrow aspiration, your clinician will take about 1 to 2 teaspoons of bone marrow. For a bone marrow biopsy, another sample of marrow will be taken immediately after the bone marrow aspiration using a new needle through the same puncture site. Your clinician will also take a piece of bone that is about ½ to ¾ of an inch long and about the thickness of a pencil
lead."
*** Will I be in pain after the procedure? ***
"You may experience some discomfort after the local anesthetic has worn off. You can apply an ice pack to the site for 20 minutes, 2 to 3 times a day if it is tender. Walking may also help your discomfort. If the pain continues to bother you, contact your care team."
----------------------------------------------------
Is this procedure old or new way? This doesn't mention anything about a drill or CT-scanner. My doctor did mention that I would have similar sedation as when they do a colonoscopy.
I am starting to feel doubtful and reluctant to have the BMB. Do I really need it? I will read all the doctors' comments and results carefully.
- Hipsu **
That being said, my oncologist never even mentioned this test to me. Lots of us here have never had it.
What if you ask your doctor that excellent question: Do I really need it?
You could also ask: What vital information will it supply? Could we start treatment now, and come back to a consideration of whether this test is necessary later?
This is just my opinion. Hope others will chime in too.
@hipsu5, I am also a member of the myeloproliferative neoplasm (MPN) club. My condition is called Polycythemia vera (PV). PV is an ugly sister of your ET and in the MPN family. In May of 2018 I was diagnosed with PV after a routine blood test with platelets in the 685,000 range. Fast forward to 2026. I take one 500 Hydroxyurea (HU) every morning. I call this "Chemo in a pill." I have little or no symptoms. I am determined not to let this condition rule my life. I thought my diagnose was the end, it turned out to be a new beginning for me. I go to my gym 3 times a week, I stay active with my veteran's organizations and am on my American Legion Honor Guard detail. I am a volunteer for Hosparus where I visit veterans on hospice. I have fatigue every evening. Is that from PV or just being an old timer? Who knows? Today is my 67th birthday. Everyday is a new adventure. Long live the fighters!
@bluegrasspv2018 Great Attitude!.. Almost my story.. was dx in 1992 with ET been on "chemo pill" (my name for it too) since then, and now at 68, have converted to PV and waiting to see at next blood draw if something else pops up! I still work full time as a Nursing Director at a home health agency and lately have been battling long covid : ( . This just means MORE fatigue. I find the immune system does not work well enough to kick things out quickly once you get sick). Been fighting for a long time, and taking it all in stride.. still walk the beaches, and hang out with friends, every day is a gift - keep your loved ones close and try not to isolate huggs
@bluegrasspv2018 Great Attitude!.. Almost my story.. was dx in 1992 with ET been on "chemo pill" (my name for it too) since then, and now at 68, have converted to PV and waiting to see at next blood draw if something else pops up! I still work full time as a Nursing Director at a home health agency and lately have been battling long covid : ( . This just means MORE fatigue. I find the immune system does not work well enough to kick things out quickly once you get sick). Been fighting for a long time, and taking it all in stride.. still walk the beaches, and hang out with friends, every day is a gift - keep your loved ones close and try not to isolate huggs
@leene808
Hello my name is Annette
I’ve been diagnosed with Jak 2 and ET. The fatigue is for really. I have to live a normal life and still feel this way. It comes and goes and I can be myself. Then just drop with tiredness. Then I get this heavy head. Really hot a head ache pressure head ache. Do you get confused when you have to multitask. Or does loud sounds and touch amplify.
I’m cold all the time.
It’s hard I have to deal with all these things and still work and live a normal life. Not knowing if this is normal. I’m on 325 mg of aspirin 1 dx. 500 Hydrea 2xdx am pm.
My palettes came down to 385 that’s good but still feel good days bad days.
The dr smile and move on.
I get it I am one that needs to know. If this is my new way of life. Drs say everybody body is different Ugh Frustrating Annette
I am living with both. On 325 aspirin 1 x day and 500 mg Hydrea 2 x day. I am only 55 yrs old. And not dealing with this well. I want to be me again. Tired a lot get confused with multitasking. Heavy head pressure behind my eyes really hot. But freezing to the point it hurts.
The dr told me I needed a support group. Nero is trying to figure out the ischemic disease. Had a CTA scan and ultrasound of my arteries on the 20th. Just waiting for appt.
With Dr. My platelets went done to 385. That was a high 5. I pray I get to be me again. Like I’m in a fog. Not here.
Looking for reassurance that this is my new way. Does it get better some days I’m me I feel great. I get all excited and then the tiredness happens and I get frustrated. Thanks for listening. I have faith and we all need to help each other. Thank you
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@janemc thanks so much for your thoughtful reply for sure I hope to hear from someone with the same experience of the bone marrow results, I was told it wasn’t bad news or good news but medium news whatever that entails I’m losing faith in doctors communicating results in non medical speak but hopefully someone can give me a clearer explanation of my results just to put my mind at ease and to stop overthinking everything my thoughts and prayers are with everyone going through complicated medical issues 🙏
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2 Reactions@roughanne
Hope someone with experience to share will chime in soon!
Odd that you were taken off a med that was working. How are things now?
@janemc hi. I have ET triple negative. I also have some “scarring” or fibrosis. I think I am a 1 or maybe 1+. It is uncommon to have fibrosis with ET I am told, but a low level of fibrosis is not alarming. Also, keep in mind that a bone marrow sample is a localized sample, the character of your bone marrow elsewhere may be different. I appreciate that all this is worrisome because we don’t know how this will turn out, but try not to let it take over. That is no help either. Sorry your bone marrow biopsy was so painful. I am taking HU, 500 mg daily. It took awhile, but it brought my platelets down and I actually feel better. My symptoms are less now than before treatment. The symptoms took longer to improve than the platelet number. In the order of 6 months or so. Hang in there and remember there are other treatments if you cannot tolerate HU.
-
Like -
Helpful -
Hug
4 Reactions@eloise999
You are wonderful to give roughanne this encouraging information, eloise!!!
Congratulations on getting your platelet count down.
And CONGRATULATIONS on escaping the symptoms of ET!
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2 Reactions@vickieannb57
I asked the hospital to explain how the BMB procedure is done. I received a short brochure.
*** What happens during the procedure? ***
"You will lie on your stomach or side, and the procedure site will be numbed with a local anesthetic. This will not make you sleepy or feel any different.
After the anesthetic takes effect, a clinician such as a doctor, advanced practice provider (nurse practitioner or physician’s assistant), or nurse will insert a needle into your bone and remove the sample of marrow and/or bone.
You may feel some discomfort such as a “pulling” feeling while the sample is being taken. The procedure takes about 20 to 30 minutes."
*** Will I be awake during the procedure? ***
"You may be prescribed a sedative to take by mouth before the procedure or given a sedative intravenously (IV) during the procedure. This medication will help you relax and decrease discomfort."
*** How much bone marrow will get taken? ***
"For a bone marrow aspiration, your clinician will take about 1 to 2 teaspoons of bone marrow. For a bone marrow biopsy, another sample of marrow will be taken immediately after the bone marrow aspiration using a new needle through the same puncture site. Your clinician will also take a piece of bone that is about ½ to ¾ of an inch long and about the thickness of a pencil
lead."
*** Will I be in pain after the procedure? ***
"You may experience some discomfort after the local anesthetic has worn off. You can apply an ice pack to the site for 20 minutes, 2 to 3 times a day if it is tender. Walking may also help your discomfort. If the pain continues to bother you, contact your care team."
----------------------------------------------------
Is this procedure old or new way? This doesn't mention anything about a drill or CT-scanner. My doctor did mention that I would have similar sedation as when they do a colonoscopy.
I am starting to feel doubtful and reluctant to have the BMB. Do I really need it? I will read all the doctors' comments and results carefully.
- Hipsu **
-
Like -
Helpful -
Hug
3 Reactions@hipsu5
A biopsy is the gold standard.
That being said, my oncologist never even mentioned this test to me. Lots of us here have never had it.
What if you ask your doctor that excellent question: Do I really need it?
You could also ask: What vital information will it supply? Could we start treatment now, and come back to a consideration of whether this test is necessary later?
This is just my opinion. Hope others will chime in too.
-
Like -
Helpful -
Hug
7 Reactions@bluegrasspv2018 Great Attitude!.. Almost my story.. was dx in 1992 with ET been on "chemo pill" (my name for it too) since then, and now at 68, have converted to PV and waiting to see at next blood draw if something else pops up! I still work full time as a Nursing Director at a home health agency and lately have been battling long covid : ( . This just means MORE fatigue. I find the immune system does not work well enough to kick things out quickly once you get sick). Been fighting for a long time, and taking it all in stride.. still walk the beaches, and hang out with friends, every day is a gift - keep your loved ones close and try not to isolate huggs
-
Like -
Helpful -
Hug
8 Reactions@leene808
Hello my name is Annette
I’ve been diagnosed with Jak 2 and ET. The fatigue is for really. I have to live a normal life and still feel this way. It comes and goes and I can be myself. Then just drop with tiredness. Then I get this heavy head. Really hot a head ache pressure head ache. Do you get confused when you have to multitask. Or does loud sounds and touch amplify.
I’m cold all the time.
It’s hard I have to deal with all these things and still work and live a normal life. Not knowing if this is normal. I’m on 325 mg of aspirin 1 dx. 500 Hydrea 2xdx am pm.
My palettes came down to 385 that’s good but still feel good days bad days.
The dr smile and move on.
I get it I am one that needs to know. If this is my new way of life. Drs say everybody body is different Ugh Frustrating Annette
-
Like -
Helpful -
Hug
3 ReactionsI am living with both. On 325 aspirin 1 x day and 500 mg Hydrea 2 x day. I am only 55 yrs old. And not dealing with this well. I want to be me again. Tired a lot get confused with multitasking. Heavy head pressure behind my eyes really hot. But freezing to the point it hurts.
The dr told me I needed a support group. Nero is trying to figure out the ischemic disease. Had a CTA scan and ultrasound of my arteries on the 20th. Just waiting for appt.
With Dr. My platelets went done to 385. That was a high 5. I pray I get to be me again. Like I’m in a fog. Not here.
Looking for reassurance that this is my new way. Does it get better some days I’m me I feel great. I get all excited and then the tiredness happens and I get frustrated. Thanks for listening. I have faith and we all need to help each other. Thank you
-
Like -
Helpful -
Hug
2 Reactions