ET/Hydroxycarbamide/ Low JAK2 levels - Another update - in case it is useful to anyone.

[Cassandra61]

Thank you again to everyone for taking the time to reply and if you are still reading, thank you even more. It is so useful to have everyone's experience and advice. I know it also helps me to get my head around it.

So I moved up North at the start of the year and transferred my care. I was diagnosed with ET in 2012 and had yearly monitoring consultations with just asprin. My platelet count never went over 600 and went up or down by around 80 over that time. At age 60 I agreed to start Hydroxycarbamide and my platelets dropped to around 300 ish. My new consultant team looked to confirm my ET diagnosis with a PCR test but were unable to do so. Perhaps this was due to my low alelle burden or the nature of the test? However, the recent BMB has confirmed ET JAK2 and I continue to take Hydroxycarbamide. So everything is as it was.

I realise how complicated my feelings are about this experience are. I am so grateful to my team for their throughness and care; it is easy just to carry on giving patients the drugs. I know how lucky I am to be well but if I am honest, there was a little bit of me that hoped it had all gone away / was a mistake and I no longer had the cancer! So, from now on, I am going to take my consultant's final piece of advice which is to keep as healthy as possible because, as she explained, she could do nothing about my genes but staying healthy would allow me to respond better to anything else. Thank you to you all for your support which I have really valued over the last few months: to be honest it has kept me going. Thank you for reading this post where I get my head round it and for all your kindness. Stay well and look after yourselves.

[Mostew]

Thank you for letting us know how you are doing .I can imagine hope was still there while still being tested . I'd be same.

So good you have wonderful support and advice.

So true , we can keep ourself as well as possible by making wise choices both about what we put in our bodies

And what we fill our minds with.

Both need nourishing.

Best wishes to you

[Cassandra61 in reply to Mostew]

Sound advice, look after yourself and stay well .

[ainslie]

It sounds like your consultant gave you good advice, ie you can’t change the genes but you can do a lot to try to optimise your health in other ways which can make you feel better and reduce thrombotic risk etc

[Cassandra61 in reply to ainslie]

Indeed, going to try to do this anyway. Thanks for the reply, look after yourself and stay well.

[Bill209]

I was diagnosed with ET JAK2 when I was 66 and my hemotologist/oncologist started me on low-dose aspirin at that time. The next step was for me to get a bone marrow biopsy to confirm the ET diagnosis and it was inconclusive but, in her experience, the fact that I had a high platelet count (>500) and JAK2 was sufficient to confirm her ET diagnosis.

She started me on 500 mg Hydroxycarbamide at that time and that brought my platelet count down to about 350, which was great. I'm 71 now and still take low-dose aspirin and 500 mg Hydroxycarbamide daily with no issues, so I think that your consultant is giving you very sound advice.

[Cassandra61]

Thank you very much for your reply which has really reassured me. I wish you many many more years of low platelets and good health, thank you.

[Mardihel]

So pleased all good, I'm like you just wish it would go away, don't like taking Hydroxy but a ho. I saw my haematologist last month, I was concerned because my white blood count very low, anyway she said I could reduce the hydroxy and as long as my platelets remained bergen 500 to 600 im OK, feel better now less tired have a good veggie diet and plenty of water and I still like a drink. Good luck!

[Cassandra61 in reply to Mardihel]

I know what you mean, I have reminded myself that well the camera hadn't gone away but I am well at the moment and being looked after. I think your plan is absolutely right. I am going to up the anti inflammatory diet but that is mostly what I like to eat anyway. I shall join you in continuing to enjoy a drink and enjoying life. Stay well and look after yourself.

[Doggy1903]

So hope you are managing ok with your meds. I am very similar , diagnosed with MPN ET aged 60 years and now, 5 years on remain on meds but a slightly lower dose. Platelets good but last time white cells a little low.

Hope you are keeping fairly well and I try to stay reasonable active!

Will love to hear how you are.

[Cassandra61]

Thanks so much for your kind reply. Your story sounds very similar. I am glad that the meds keep the platelets in line and agree that the white cells are the ones I watch too. TBH it has shaken me going through the various tests even though I am so lucky to be ok . I know loads of people aren't ok and have a rotten time with their MPN. I think I still hadn't really accepted that yes I do have a cancer until recently .So today up and being positive, been for a run by the sea and focusing on feeling well.I really hope you stay well and active and that the meds can balance the platelets protect the white cells. Take care and look after yourself 🌞