Et: Well saw my consultant platelets still raised... - MPN Voice

MPN Voice

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Et

Sinylg
Sinylg

Well saw my consultant platelets still raised but other tests ok apart from abnormal bone marrow biopsy result.Am being started on HYDROXYCARBAMIDE.Still not sure of my diagnosis but it sounds like a cancer, very worried .

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You need to speak to your doctor about your BMB, to get a proper diagnosis, to agree what treatment is needed and to understand what you are trying to achieve, eg get your platelets down to a particular value.

Nobody on the forum can give you a diagnosis.

IF you have have ET there is plenty of advice and experience available on symptom management etc.

Sinylg
Sinylg in reply to Applesnpears

Thank you i have another appointment in a few weeks to discuss ny case further.Not started on the medication yet on my blood forms it says ET. Thanks for your reply .

Applesnpears
Applesnpears in reply to Sinylg

The link below provides a clear and comprehensive overview of ET.

mpnvoice.org.uk/about-mpns/...

Study it before you go to your next appointment. I'd recommend going with a friend or family member and ask them to review the link as well. Ask lots of questions and take a notebook to right down the answers.

Sinylg
Sinylg in reply to Applesnpears

Ok i will read and study it. Thank you for your advice and help much appreciated.

If the diagnosis is Essential Thrombocythemia (ET) then this is a Myeloproliferative Neoplasm (MPN), which is a form of blood cancer. However, do not let the "C" word unduly worry you. ET is a long-term chronic condition and most people with it live a normal or near normal lifespan. You are more likely to be managing quality of life issues than end of life issues for the foreseeable future. I was diagnosed with ET over 30 years ago. Have managed just fine on aspirin-only for most of this time.

Regarding hydroxyurea - it is not an automatic assumption you will need it. There are a variety of factors to consider, including: age, plans for having children, cooccurring medical conditions, platelet levels, history of thrombosis or hemorrhage, etc. There are also options other than hydroxyurea that you can discuss with your doc. If you do need cytoreduction and choose to use HU, then there are some specific things to be aware of in how you manage the medication. This will be true for any form of chemotherapy as all meds have risks/benefits to be considered.

All the best to you.

Sinylg
Sinylg in reply to hunter5582

Oh thank you for your good advice it just seems to be my platelets that are raised white cells and red cells seem ok.All the best to you also thank you.

grgracey
grgracey in reply to hunter5582

So true hudroxyrea is a chemo drug that brings our platelets down but it has side effects. When I took it it seems I am a ball dribbled by someone and I have a heavy head sometimes very light also. I decided not to take it dor awhile but platelets are up right now and must see my doctor again this week I felt like human now after a retreat from hydroxyurea. But still the worries are there not having it. My platelets is now a boundary.And this will up if no medications taken.

hunter5582
hunter5582 in reply to grgracey

I hope you are able to see a MPN Specialist. Most doctors, even hematologists, do not have much experience with conditions like ET. The risks that accompany thrombocytosis are not a straight line more platelets = more risk of clots. Some doctors just like to "sanitize" the lab values of the platelets. which may or may not be what you really need. There are differences in what is considered high-risk vs low-risk ET and the treatment protocols are not the same. Please do take the time to learn about this and be ready to ask your doctor the right questions. Do also be sure to see a doc who has the expertise you need. Here is a list of doctors recommended by other MPN patients, mpnforum.com/list-hem/ .

All the best to you.

Sinylg
Sinylg in reply to hunter5582

Thank you for the good advice .

Yes like me...we are same...acceptance and doing our best in handling the cancer.

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