essential thrombocytosis or mf: not sure if my et... - MPN Voice

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essential thrombocytosis or mf

glyndale profile image
15 Replies

not sure if my et is progressing to mf, Hb 112,normal mcv ,wbc 5 .2,neutrophils 3.6,platelets 352,eGfr 88,lft normal, ldh595.mild splenomegaly at 13.7. medication is aspirin,symtoms are fatigue, dry mouth,frequent urinating and of course anxiety. Does anyone think i should be on some treatment Thank you.

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glyndale profile image
glyndale
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15 Replies
Aneliv9 profile image
Aneliv9

Was your first ET diagnosis based on a bone marrow biopsy?

glyndale profile image
glyndale in reply to Aneliv9

yes i had a bmb bout 3 years ago

Otterfield profile image
Otterfield

I'm sorry but none of us are qualified to answer your question. You need to discuss this with your haematologist.

Good luck

glyndale profile image
glyndale in reply to Otterfield

Thank you.

hunter5582 profile image
hunter5582

None of us are qualified to comment on your status regarding potential progression to MF. Particularly not based on a single lab read. You would need to look at all of your labs over the course of time. I single lab read can vary for a wide number of reasons. It is the trend over time that matters.

Regarding whether you should be on treatment other than aspirin, that depends. It depends on the actual symptoms you are experiencing, your level of risk, and what your treatment goals are. You also have to consider your risk profile and your preferences about which risks to take.

Suggest you review MPN Status with your care team and discuss what your treatment goals are. Yu can review the risk/benefit profile of each of your choices and make the best decision for yourself.

All the best.

glyndale profile image
glyndale in reply to hunter5582

Thank you for replying ive been on aspirin for few years and didnt have any symptoms,but now have fatigue but no other symptoms,However i see my consultant next week so hopefully will get some answers. Thanks again.

summerdown profile image
summerdown in reply to glyndale

you need to discuss with your hemo. and look at your meds. usual med for ET is hydroxy but other meds also prescribed, and ask your hemo to check your aspirin prescription.

glyndale profile image
glyndale in reply to summerdown

Thank you

EPguy profile image
EPguy

Do you have records of all your blood counts since Dx? Dr will need to see that for comparison. Are there large changes recently?

Fatigue is experienced by many of us with every sort of MPN, but your Dr will know best as others here say.

glyndale profile image
glyndale in reply to EPguy

thank you

Wyebird profile image
Wyebird

I can’t comment on your bloods but just bear in mind when you are anxious you tend to breath through your mouth which makes you thirsty thus urinate more.

It’s awful isn’t it.

Do you have a nurse you can speak to?

When did you have those bloods done?

glyndale profile image
glyndale in reply to Wyebird

bloods done 2 weeks ago,seeing consultant next week,thank you.

Wyebird profile image
Wyebird

my advice go with a copy of your bloods and query every count you are worried about. Good luck

glyndale profile image
glyndale in reply to Wyebird

Thank you

monarch5000 profile image
monarch5000

I'm not a doctor, but your blood counts suggest a mild case of ET. Some docs like the ones who wrote the 2021 paper below believe even mild cases should be treated with interferon to prevent further disease progression.

It's possible you have another ailment besides ET that is causing the frequent urination and high LDH - hopefully not bladder or kidney cancer. ncbi.nlm.nih.gov/pmc/articl...

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