Doctor visits/year average with ET?

[nightshadow]

I was diagnosed with ET JAK2 Jan of this year and put on HU. Fortunately I responded well to it and my platelets are decreasing, possibly within an acceptable range for my doctor at my next visit.

I am curious as to how many times a year people have blood work done once their doctor feels that they are on a balanced dose?

So far I've seen my doctor 7 times since diagnosis bringing my platelets down. Much as I like my doctor I am looking forward to not seeing quite so much of her.

[mhos61]

Every four months for me.

[Hidden]

I am not on HU, so it is yearly to 18months. ET with CALR.

[Kari1961]

I have PV Jak2+ and take HU I see mine every 3 months. Mind you, that does sometimes change due to HCT levels and I have recently seen them every two months. It does sometimes feel (especially during lockdown) that I see more of the nurse who takes my blood than my friends.

🙄

[Hydrox]

I am ET Jack2 + I have bloods done 3 monthly, have telephone consultation with specialist nurse, not seen my consultant for 4 years.

[Murphymj]

Every 4 months I have my bloods done and a follow up with my doctor a few days later.

[jointpain]

My wife has MF and visits her consultant every 8 weeks for bloods, though has been stable for a couple of years except for the bleeding. She was admitted yesterday as she vomitted up a couple of pints yesterday.

[Cja1956 in reply to jointpain]

I’m sorry to hear about your wife. That sounds awful. Are her platelets dropping or increasing.? I have MF and my platelets have been steadily increasing all year. This week they’re at 921,000, which is the highest they’ve ever been. I wish your wife all the best.

[jointpain in reply to Cja1956]

Thanks for the reply. Her platelets have been steady these past couple of years, at around 270 to 370 though past two FBC show clumping platelets.

[nightshadow in reply to jointpain]

Oh dear, I hope your wife will be okay. Thanks for responding, all things considering. Good luck to you and your wife!

[Runner999]

Asymptomatic ET CALR on hydroxy + clopidogrel - 3 monthly blood tests and now all teleconsults instead of every other one by phone. I assume I would be seen if things changed.

[Cja1956]

When I was diagnosed Et in 2008, I saw my doctor, on average every 2-3 months. When I progressed to MF a couple years ago and changed doctors, I was first going to her every week or two for EPO injections and when I stabilized, I started seeing her about every 2 months.

[Alliswell4me_]

I was diagnosed 21 yrs ago, started Hydrea in 2012. Began every 3 months blood draws since then.

[Scrollernut]

I had a blood draw every month since February of 2020. Since things seems stabilized so far with 500 mg of Hydrea every three days we’re trying every two months. Got an appointment in may so we’ll see if things are still ok.

[nightshadow]

Thanks all, knowing that each persons response is unique to the disease and HU,

there was more of a consensus than I had hoped.

[Anneian]

Hi when I was first diagnosed I saw my consultant monthly, I now see her every 3-4 months and have my blood test done just before I see her so she can see the results on the computer.

[1219Smokey]

That is what happened to my husband, who over a period of ten years with insufficient knowledge being given to him. I lost my husband because of that

and the pain in unbearable.

Take good care of yourself and make sure you are heard if you need to complain.

There are alternatives to hydroxycarbamide but they will not own up to that and

over the years they gave my husband bone marrow cancer.

[nightshadow in reply to 1219Smokey]

I am so sorry to hear of the suffering your husband and you have gone through.

[Lifam]

I personal think it's really up to ourselves when our platelets are well maintained. But as for myself I ask my GP to give me blood test every 2/2.5 month apart from appointment every few months with my MPN haematologist although my platelets has been within normal range since on HU, because apart from platelets, I also want to keep track with other blood counts, my kidney, liver, glucose level, cholesterol etc etc as I believe it all helps.

[NedKel65]

Hi nightshadow I have blood tests every 3 months and more frequently if counts change