How often should bloods be done?

[lynnieb]

I don't go back to my haematologist until Feb 2016, but should I get them checked in the meantime? Being newly diagnosed, I just don't know. Thanks

[JediReject]

Hi Lynnieb, , tis oft every 3 months or so if things are fairly 'settled' with ones MPN. . I would say that at any time inbetween clinic appts you feel extra tired or generally below par but don't have a cold or virus then you should see the nurse at your GP surgery for interim bloods. They won't mind and if it turns out your counts have flipped out then contact your Hem secretary and get in as soon as poss. .

Alternatively if your hospital has an Oncology Day Unit you may be able to ring them and pop by for a blood test. Cheers Chris.

[rubyrubyruby]

Hi.

The time in between my blood tests has varied since diagnosed 3 years ago. At first every 3 months, then every 6 months and now I have to go back after 6 weeks! It depends how stable your bloods are and how you feel. I have also had my bloods done at GP if not feeling great. I personally feel happier to go every 3 months as 6 months feels too long in between.

Hope this helps.

[Kari1961]

Hi Lynnieb

I was diagnosed with PRV at the beginning of 2015. I saw my haematologist every 4 weeks for the first 5 months, then because my levels had settled a bit they saw me after 8 weeks. Now they're trailing going longer between appointments so I don't have to go back to see him until Feb 2016 ~ however they have suggested that I book a blood test at my GPs in December; just so we can keep a check on it.

As Chris says if you're not feeling well, or even if you just want some reassurance that everything is ok, book an appointment with your GP or hospital.

It is a bit daunting when you first get the news that they don't need to see you for a further xx months. I know I personally felt happy that my levels had settled and that I didn't have to trek to the hospital as often, but at the same time I felt apprehensive as I wasn't going to be checked as regularly. I suppose we just have to have faith in our haematologists.

Karina

[Paul42]

Hi

it differs between people and can take time to settle down. Mine have varied from 4 weeks to 3 months, whereas my sis who has ET is annual.

I always think my sis isnt enough BUT they are always roughly the same so the consultants know better than i do.

Im always told by mine if i feel i need an earier one i can as he is happy i know the warning signs to look out for.

Paul

[Linda1950]

Hi I was diagnosed with ET and Jak 2 in Sept this year I have had blood tests done every two weeks since and have had a telephone appt or seen the Haema after my tests as my platelet count hasn't settled yet and she needs to adjust my hydro dose. I would say that's normal at the beginning I'm hoping once that has stabilised I will see her and have blood test less often. She always asks me if I've had an infection and If I'm feeling ok, I guess that will affect the counts and maybe mean a tweak in the drug dose. I think a lot depends on your age and severity of your complaint you would hope that the consultant knows what they are doing. I've been given the number of a MacMillian nurse to ask any questions if I have worries so you could always do that, they are excellent, or talk to your GP but most do not understand MPN's, experts are best.

[lizzziep]

The time between my blood tests has varied from 2 to 12 weeks depending on the results. As the others have said if you need reassurance either contact the haematologist or your gp for a check up.

Best Wishes

Lizzie

[mark382]

My appointments vary between 3 and 4 months. If I don't feel well between appointments I can and have called to see if I can see haematologist. Usually see her within a few days. Diagnosed with PV about 7 years ago.

[Aime]

Hi lynnieb, my bloods were checked once a week, then once a fortnight, once a month at the beginning, diagnosed with PV in 2012. I have now been promoted to every two months but if worried about any symptom in between, can ask for a check at GP practice for reassurance.

I would say at any time if you are not happy with a symptom, or how you are feeling, insist in getting checked. Best wishes Aime xx😺😺

[lynnieb]

Thanks for that advice. I think this forum is such a help. I used to be a nurse, but this wasn't a condition I ever came across. I'm very glad to have found you all

[Hidden]

Hi Lynnie, I was diagnosed with ET after a bone marrow biopsy and gene testing which proved positive to CALR gene. Have just had follow up appointment and I don't need blood test for another 6 months. And don't see the haematoligist for a year. I actually don't have any symptoms, I guess he is to watch and wait. I am 63. Like you I am still nursing and have never heard of it either. Lyn x