Polycythemia & Bone marrow Disorders screening

Posted by mahmoudbakry @mahmoudbakry, Feb 24 11:57pm

‏hello everyone good morning And it’s great to talk to you.At the beginning of 2022, I began to feel terrible pain in my stomach. I went to an internist, and he made me underwent cbc test, which showed that hemoglobin was 20. He ordered me to see a hematologist, who in turn for 2 years made me underwent a lot of exams for the heart, then the kidneys, then the liver, and hepatitis viruses which all came back normal .And the lung,he also asked me to donate blood more than 12 times in 2 years and he gave me a lot of time after every blood donation to follow up the hemoglobin.and he made me underwent these tests:
‏JAK2 V617F & JAK2 Exon 12 which came back Not detected
BCR ABL not detected also
MPL & Calr Mutations Not detected also
‏the problem is that he told me that I must undergo a bone marrow aspiration & biopsy to make sure that there’s no disorder in the bone marrow because there is no secondary cause for high hemoglobin, and that hemoglobin always goes up after a while from the blood donation and the spleen is moderately enlarged, and that I am not Smoker.
I am terrified of undergoing a bone marrow aspiration biopsy,What should I do?

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@lynniej

My routine bloodwork came back with high hematocrits.
I didn’t have any complaints at the time.

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My last cbc results ,haematocrit 49,and hemoglobin 18.5
.do you remember your hemoglobin or white blood cells counts?

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@loribmt

The stain is a procedure done on the sample in the lab after you’re finished with the biopsy. ☺️
It’s my pleasure to be able to help you and offer some reassurance. Let me know how it all turns out for you, ok?

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Yeah of course,one more thing,my ALT test for last 2 months 160 and i think max normal range is 40 !, I remember I asked my hematologist dr about it and he told me don’t worry about it,your liver normal no markers,maybe it’s because your high hemoglobin or you’re little fat ,just worry about your blood .does he right?

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@jewelfaux

I have ET JAK2 and was diagnosed using genetic blood tests. My doctor told me that a bone marrow test was not necessary. True?

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So you had these tests JAK2V617F,JAK2Exon12,
BCR ABL-MPL-CALR?which one was positive?
I don’t know the medical reason for what your dr said but I remember my Dr told me that if the tests I wrote up were negative he will put me to bone marrow test ,and I think maybe because one of these tests came positive so he doesn’t need to see the bone marrow,maybe he will need to see the bone marrow after you starts your treatment,so do you take aspirin? And What’s next ? What’s your next step?

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@mahmoudbakry

My last cbc results ,haematocrit 49,and hemoglobin 18.5
.do you remember your hemoglobin or white blood cells counts?

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Always within range. Still are while I’m on Jakafi

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@mahmoudbakry

Yeah of course,one more thing,my ALT test for last 2 months 160 and i think max normal range is 40 !, I remember I asked my hematologist dr about it and he told me don’t worry about it,your liver normal no markers,maybe it’s because your high hemoglobin or you’re little fat ,just worry about your blood .does he right?

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Hi! There can be some concern when the ALT results are higher than the norm. Sometimes it can indicate issues with the liver. But there can be a number of things that can influence the changes in the liver enzyme number that don’t mean liver damage.
The doctor will look for trends and use that number along with other results such as AST and LDH to determine a problem. As an example, recently my ALT was elevated. But my AST and LDH were ok. After a little sleuthing, it was determined the problem was caused by a popular multivitamin for women that I had started taking a couple months before my last blood tests. The Vitamin A wasn’t being metabolize as it should and became a bit toxic to my liver. I stopped the supplements and subsequent tests have shown my numbers are back to normal. So that’s how touchy livers can be but they can regenerate quickly as well.

Your doctor seems to be taking all of this very seriously for you and ordering the appropriate tests. So try to relax and let him ‘do his thing’. When the biopsy reports return he may be able piece all of this together and find a cause for the excess red blood cell production. I’m sure you have him scratching his head with this mystery. 😉

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@lynniej

Great! Best of luck

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My ride was sick, so I had to reschedule until mid-March..ugh.

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@jewelfaux

I have ET JAK2 and was diagnosed using genetic blood tests. My doctor told me that a bone marrow test was not necessary. True?

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My oncologist said the same. If treatment will be exactly the same either way, no need to endure the bone marrow test and the COST of it.

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@nypara66

My oncologist said the same. If treatment will be exactly the same either way, no need to endure the bone marrow test and the COST of it.

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@jewelfaux and @nypara66, You’re both correct. It is possible to determine if a patient has the JAK2 mutation without the need for a bone marrow biopsy. It’s done through blood work.

ET and PV are myeloproliferative diseases. This means there is a glitch somewhere that’s causing an overproduction of blood cells. The defective JAK2 gene can be one of several potential causes. A definitive diagnosis can determined with a bone marrow biopsy.
The bone marrow is the heart of the blood manufacturing site in the body. The results of that biopsy, a core sample of the marrow, gives the doctor an overall picture of the health of the marrow and its ability to provide healthy blood products.
https://www.healthline.com/health/cancer/myeloproliferative-disorders#causes-and-risk-factors
I know, they’re no one’s favorite tests, but on occasion the biopsies are necessary. I’ve had 13 of them and didn’t mind the last 10. They were done under mild sedation and I woke up to juice and Lorna Doone cookies. 😉

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@wozsgal

My ride was sick, so I had to reschedule until mid-March..ugh.

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Oh I’m sorry,so I'll do it either Tuesday, March 5 or Wednesday, March 6, and I'll tell you everything that happened during it.

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@loribmt

Hi! There can be some concern when the ALT results are higher than the norm. Sometimes it can indicate issues with the liver. But there can be a number of things that can influence the changes in the liver enzyme number that don’t mean liver damage.
The doctor will look for trends and use that number along with other results such as AST and LDH to determine a problem. As an example, recently my ALT was elevated. But my AST and LDH were ok. After a little sleuthing, it was determined the problem was caused by a popular multivitamin for women that I had started taking a couple months before my last blood tests. The Vitamin A wasn’t being metabolize as it should and became a bit toxic to my liver. I stopped the supplements and subsequent tests have shown my numbers are back to normal. So that’s how touchy livers can be but they can regenerate quickly as well.

Your doctor seems to be taking all of this very seriously for you and ordering the appropriate tests. So try to relax and let him ‘do his thing’. When the biopsy reports return he may be able piece all of this together and find a cause for the excess red blood cell production. I’m sure you have him scratching his head with this mystery. 😉

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lol 😂,yeah I guess he’s scratching his head,he wants to know the cause

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