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

14 Replies

oldestnewest
  • 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

  • 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

  • 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.

  • Hi Tamzin

    It just says vw activity 40.9 ?

    Hope you get some answers

    Melanie

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

  • 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

  • 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!

  • 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?

  • 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

  • . I'll see what next week brings. Thanks

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

  • Thanks Maz

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

  • 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

You may also like...