Essentially Thrombocythemia (Exon 10)

[Raphael_UK]

I was wondering if anyone else has an Exon 10 mutation as it seems very rare. It’s similar in characteristics as JAK2, I was diagnosed with Exon 10 (ET) June 2016

[Tinkerbell13]

You are obviously a rare one, think only 5%....do hope you get some replies, but don't forget Prof Dr Claire Harrison at Guy's, if you want extra advice. Sending this, as always think it can be a bit disappointing not to get anyone replying on this splendid forum, but I am just the ordinary ET Jak 2 + and not so interesting as you are! Wishing you the very best, Tinkerbell

[Raphael_UK in reply to Tinkerbell13]

Thank you, well Jak2 is my nearest gene, thank you for replying. I think the symptoms and treatment are the same. I hope you’re managing ok. Raff

[Tinkerbell13 in reply to Raphael_UK]

Hi Raff, thank you....I am one of the odd ones who reacted to everything given me (you name it!), so at present just on vitamins and the extraordinary Turmeric, which seems to be keeping my platelets level (if still high)....what are you on? and are you doing o.k.? Best wishes, Tinkerbell

[Raphael_UK in reply to Tinkerbell13]

I’m on Hydroxycarbamide, 3 days 500mg, 4 days of 1000 mg makes me feel a bit crap but it’s brought my platelets down from over 800 to 600 and seems to have stopped at that level. Dr Harrison who you mentioned is he the haematologist from Watford / Hemel ?

[Tinkerbell13 in reply to Raphael_UK]

If you can look up on the Forum about the London Forum they had a few days ago, you will see all about Dr Claire Harrison, she is probably the leading person in MPNs in the UK and is based at Guys and a lot of people ask to be referred to her.

Well done, getting on with the Hydroxy...heard of those who have been on it for 20 years and more and still doing well. I am a bad example!

Platelets sound o.k. Mine hover around 825 but haematologist, knowing my odd history, is o.k. with that, but not keen for them to go to 1,000....so we are all hoping they will stay put.

Best regards to you, Tinkerbell

[Raphael_UK]

825 sounds a bit high, but if you’re fit and healthy you should be ok, I’m old, well 64, and when my levels got that high I had a very minor stroke, just made me boss eyed for a few weeks then back to normal. I wouldn’t mind seeing the haematologist who knows what they’re talking about, I’m only 20 minutes train drive from London.

[Susana7]

Hi Raff, just spotted the St Albans cathedral on your profile! Are you local? I am in St Albans and attend the haematology clinic in Hemel Hempstead Hospital, which I find excellent. I have PV (JAK2 mutation) and am on Pegasys. Susana x

[Raphael_UK]

Hi Susanna, yes I’m from St Albans, have lived here man and boy. Ex-Beaumont Boy. I also go to Hemel Hempstead and see Justin Harrison, haematologist bi-monthly. Good to meet you, how are you coping with PV and the medication?

[Susana7 in reply to Raphael_UK]

What a coincidence! I know Beaumont well, my boys are at St Columba's but I have several close family either attending Beaumont or working in Beaumont! I saw Justin Harrison once, I normally see Sue Bradley: although they are general haematologists rather than MPN experts, they are excellent and have experience treating ET and PV patients. I go every 3 months. I saw the wonderful Prof Harrison at Guy's Hospital for a second opinion and she confirmed the treatment plan. My counts are all normal now, after 2 years on Pegasys. I work full time, lead a normal life. Hope you are doing well too x

[Raphael_UK]

I saw Sue Bradly on my last visit for the first time. I wonder if Claire Harrison is related to Justin?

I’m glad you’re doing ok, keep in touch.

Raff

[Susana7 in reply to Raphael_UK]

I thought the same but they are not related! Claire Harrison does know our haemos in Hemel, it is an advantage being so close to London. Oddly, when I was first diagnosed in 2014 there was a second Dr Harrison at Hemel, more junior, that has since moved on. All the best to you and let’s keep in touch. Susana x

[Raphael_UK]

There is a FB group I was directed to by MPN Voice its called "St. Albans Haematology Support Group", I signed up as a member but have never been to their meetings. They sometimes have interesting speakers. As far as I know I am the only MPN person on the group so I wasn't sure about going to their meetings.

[Susana7 in reply to Raphael_UK]

Raff, Just like you I signed up to the St Albans Haematology Support Group (after seeing it advertised in Hemel Hempstead haematology clinic’s waiting room!). Equally, I have never been to a meeting for the same reason! But I noticed last month that an ET sufferer from Welwyn Garden City that I met in another MPN Facebook group had gone to the meeting. Something to consider for future meetings? Susana

[Raphael_UK in reply to Susana7]

That’s good to know, I may just go along to the next one. Thank you for letting me know. Raff