ET, or something else?: Just wanted to ask a... - MPN Voice

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ET, or something else?

Sarahjane100
Sarahjane100

Just wanted to ask a question. I am currently waiting for BMB results. I have suspected ET, but nothing confirmed yet. I get results in mid September. I am triple negative for gene tests. My highest platelet count was 591. Am on aspirin daily. Infection and inflammatory causes ruled out. I'm not anemic and am a 53 year old female. I just wanted to know what else it could be, other than ET? I know I need to wait for results, but September 20th a way off yet! Thanks.

15 Replies
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Hi Sarahjane,

I don’t think anyone can answer this question, it would be mere speculation. A BMB is a ‘major criteria’ now to determine ET from early PMF. Because you’re triple negative a BMB will give the haematologist a clearer picture too.

Do you only have raised platelets, or are there other raised cells?

It does seem a long time to wait, I don’t know if that’s reasonable, as I’ve never had a BMB. I would try and fill your days, keep busy, have things to look forward to. Hopefully this will divert your attention and time will pass quicker.

Wishing you luck

Mary x

Hi Sarahjane - as Mary says, it’s speculation to try to answer. For me, also triple negative and only on low-dose aspirin with platelets in high 600s for a year and a bit, it was my BMB that confirmed the haemo’s suspected diagnosis of ET. Because I went and had a stupid little TIA in May, I am now on hydroxyurea and clopidogrel (blood thinner/anti-platelet med).

H Sarahjane,

As the others have said, no one will know until the result of the BMB comes in. I have myelofibrosis, and my BMB was taken in early December 2016, and I didn't get the results till well into January. Holidays and so on intervened. It wasn't a very good Christmas that year. However, when I did get the result I'd had a chance to do some research and was able to ask the excellent local haematologist for a referral to an MPN center of expertise. And also asked him to crunch my results through the then best prognosis calculator. Me, I like to have some idea of the numbers.

Do keep posting -I found it helps.

Rachel

I hope your biopsy gives you answers. Mine was unable to confirm ET, but also did not rule it out. Since I am also triple negative I have no diagnosis. The doctors have no explanation besides ET so they work under the assumption that it’s what I’ve got. It’s hard finding yourself without answers and being in that in between place and the uncertainty of that. Good luck and fingers crossed for you and some clear results!

Thank you so much for that. I simply want to know, and I'm sure you do too. Are your platelets high? Mine were 591 at highest, and 490 the last time I saw heamotoligists

Mine are usually in the 7-800 range. They have been high since at least 2005 but I have only known for a little over two years.

If your bone marrow biopsy did not confirm ET, does that mean you do not qualify for the prescription exemption certificate? I know you are entitled to it if you have an MPN. I really hope I get some answers in September. I'm so tired of explaining to everyone that I don't know yet!

SOD2
SOD2 in reply to Sarahjane100

I feel the same. I have high platelets and an inherited mpl mutation but as far as i'm aware my bmb did not confirm ET. My haematologist says there is not a clear category to fit me into but i'm being treated as though I have ET. I was also told that what I have is so rare that there is no diagnosis/name for what I have. I start chemo(hydroxycarbamide) in 2 weeks because of the TIA I had in April.

ChelseaF
ChelseaF in reply to SOD2

It’s hard being in this place. I have started just telling people that I have a blood disease and leave it at that.

Iam in the US so I’m not sure about that. Right now I’m not medicated buy I have lots of symptoms so I intend to get yet another opinion. My current hematologist seems to want to blame all my symptoms on being forty with young kids. It’s very frustrating.

It must be hard for you. In the UK, if you are diagnosed with a lifelong desease, you areally entitled to free prescriptios and the flu jab, also free eye tests. I just want the 20th of September to get here, so I can see my heamotoligist and get some answers! Take care. Sally. X

There are pluses and minuses to our system and fighting insurance companies for care is definitely a minus! So far our insurance has been good but the future is uncertain and worrying.

Keep us posted in September when you hear. Hoping for clear answers!

Thank you! Will keep you posted. X

Mazcd
MazcdAdministrator in reply to Sarahjane100

Hi Sarahjane, it is just a case of waiting I am afraid, we cannot give you a diagnosis. Wtih regards to an exemption certificate for prescription charges in England, this is issued via a FP92A form, which your haematologist or GP can sign for you, however, you can only have an exemption certificate if you are receiving medication for your MPN, not just because you have a MPN, but once you have the certificate it will cover all prescription costs, though I am not sure about free eye tests, this is something you may want to check. I can understand your frustration at having to wait for your results, but try not to worry too much. Best wishes, Maz

Mary has said it all. I’m afraid it’s a waiting game. I wish you well.

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