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ET and Von Willibrands

Hi all, I'm freshly diagnosed ET with Jak2 +ve. Haemo decided to do BMB, ultrasound and extra bloods. BMB was fine as expected but I have really low levels on all Von Willibrands markers... so he said he couldn't give me aspirin going forward to help with platelets which are around the 700k because of it. He wants me to be retested to double check, but if this is the case, I'm confused as to what my options are for treatment.

Thanks

Tamzin

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Hi Tamzin, really responding as don't like you not to have a reply, after being 'freshly diagnosed'.....I have had ET for 4 years, but not a Von Willibrand connection. Just want to encourage you - also to suggest you ask your haematologist to give you much more information and, if necessary, refer you to Dr Clare Harrison, at Guys Hospital. Carry on, though, with this brilliant Forum....so many 'kindred spirits' to encourage you all the way.

Wishing you all the very best. Tinkerbell13

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Hi Tamzin

I'm same as you. ET & now low Von Willebrand

I'm under Claire Harrison who has referred me to Harmophila DR at st Thomas's

Evidently ET does have an effect on Von willebrand & your blood group if you're O is a factor as people who are blood group O have low Von willebrand anyway! It's just not normally tested for

I was stopped from taking aspirin but I've now restarted, I felt quite unwell when not in the aspirin & it seems bruising is the only problem but i bruised when not on aspirin so think it's the ET

Dr is doing more tests as the VW is dropping & he wants to find out why, mine was 40 last test which I don't think is that low

Hope that all makes some sense, I will let you know when I hear anymore

Melanie

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Thanks Melanie. I was a bit thrown as I hadn't started on asprin but was hoping it would help with headaches and vision and then he said I probably couldn't take it. Which VW factor is the one you are talking about, is it the Factor VIIIc? I can't see an overall score but I did read about the O type blood.

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Hi Tamzin

It just says vw activity 40.9 ?

Hope you get some answers

Melanie

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Hi, over here a have a few different things they measure but don't give an over all result. Thanks

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Hi Tamzin

I got a letter through with some more info, on the VW, I’m not blood group o so that doesn’t apply, the vii factor is normal so is antigen but the activity is low & falling

He suggests this is something they are seeing more of in ET with discrepancy in the results, not clear VW disease, he thinks it’s type 2 acquired

Hope that makes some sense, I’ve gone back on aspirin until I’m told otherwise as it does help me

Hope you have some more info yourself

Melanie

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Thanks! I've had my bloods redone and head back to Haemo tomorrow to see if I still had a low reading, I'll keep you posted!

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Thanks Tinkerbell. I'll have a few more questions for my Haema when I go back. I'm in Australia but assuming you are elsewhere. How are you coping in general with your ET?

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Hi Tamzin, hadn't realised you are in Australia, (not sure if temporarily), but hope you find a really supportive and helpful haematologist. Am in UK and blessed with one, who is immensely caring....and that alone is very helpful re coping with ET.

To start with, it was panic stations! because of the word 'cancer', but having had it for these years, just treat it now as part of life. Sometimes, extra tired, bad sweats at night, learned to live with.

I personally did not get on with the various drugs, Hydroxy, Busulfan and Anagrelide, (my family all tend to react rather badly to drugs of any kind), so at present, am trying a natural alternative, i.e. Turmeric, day and night. Platelets around 825 at present. Regular blood tests. Many people round the world get on well with their prescribed drugs, so I would never want to influence anyone - and especially important to go along with one's haematologists, too. I don't have the added complication you have, so all the more do I wish you the very best and do hope you will go on being part of this brilliant Forum.

Tinkerbell13

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. I'll see what next week brings. Thanks

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Hi Tamzin, there are alternatives to Aspirin, you should ask your haematologist about them. Best wishes, Maz

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Thanks Maz

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Hi, I have an update... my retest for VWB still comeback very low so now off to another specialist ....

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Hi Tamzin

Hope you’re ok, I went back for my VW testing & saw a different doctor, he says it is becoming common in ET as your platelets increase the VW goes down, doesn’t think it’s a problem & more important to take aspirin

So that’s where I am, be interested to see how you get on & what they say in Australia 🇦🇺

Take care

Melanie

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Hi Tamzin,

How did you get on with the other specialist? I have the same although I'm waiting for the results from the second test which I had last week (takes around 4 weeks to come through), but I'm not allowed aspirin at the moment, so if it's still low I'm not sure what my specialist will recommend. I'm in NZ ;-)

Wendy

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Hi Wendy, would you believe I am still waiting for my referral letter!!!!! He told me I needed a referral 3 months ago and I'm still chasing the letter. He is back today so the secretary was chasing it up for me. So, I can't help at this stage.

On another note, the results for the VWB are really quick here, only about 5 days.

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Hi Tamzin, it sounds like we're probably at about the same stage, I was officially diagnosed in October/November with ET JAK2+ but have probably had it for about 5 years. My platelets are also sitting just over 700 at the moment, I have regular blood tests due to high blood pressure (inherited since I was around 32) and my platelets have been up for a long time (over 500), but my GP didn't refer me as he said that was probably my 'normal' level and I didn't realise what it meant although I do now. He only referred me when it hit 738 then 620. My haemo hasn't referred me for a BMB or ultrasound at the moment, he had a feel for an enlarged spleen but I don't think he found anything that way ;-) I'm planning to ask about the BMB next time I see him. I had bleeding with my last three surgeries and they've found I have low VWB, so just waiting on the re-test result, don't know everything takes so long here ha ha, 5 days sounds much better ;-) So I kind of feel like I'm in limbo at the moment and my next appointment won;t be till May unless he decides he wants more done from the VWB test results.

Good luck with the chasing up and let me know what they decide to do re the ET combined with low VWB, it will be quite useful to know when I see my haemo next ;-) He said he would have to contact other doctors who had more experience with it, I'm hoping someone at Guy's as they seem to be the experts ;-)

Take care

Wendy

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Hi Wendy, yep we sounds similar. Do you have messenger or an email and I'll send you my blood results for VWB so you can compare. Be interesting to see yours. By previous comments it seems that some people have different tests and results aren't all reported the same way.

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Hi Tamzin I don't have a copy of my first test VWB test result so I'm not sure exactly how they measured it, I'm hoping they will send me a copy of the second one, this is the link to the test I have so you can see if it looks similar to the one you've had

wellingtonscl.co.nz/Patholo...

I am on Messenger I'll message you my surname and email on there so that we can connect on Messenger or email, whichever you prefer ;-) I am going to email my haematologist to see if I can get my last result and ask for the new one when it comes through.

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Connected :-)

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