bloods

[Badger1]

hi can people tell me how long it usually is between blood checks please I’ve wait 17 weeks this time usually 8-10 weeks bloods were fine except haematicrit gone from being controlled at 45% to 48 % and now need two lots of bloods off but still haven’t heard anything after a week I’m thinking must be nurses strike!!! Feeling crap😩

[Cat1001954]

hi I was diagnosed in aug with triple negative ET. I have bloods done once a month before I see heamatologist I’m due in jan which is a 6week gap and I have paperwork already to do bloods again just before appointment he said if my platelets are stable I might go to 3month appointment hope this helps good luck

[Badger1 in reply to Cat1001954]

thanks👍🏻

[Exeter21 in reply to Badger1]

Every 4 weeks unless stable numbers until they get medication right . 👍

[Cakeface]

My nurse usually just tells me but it generally depends on how things are going. Usually every 4wks when HCT is over 45. Plus, I have a supply of blood forms so I can put in for a test if I feel I need one. If you don't feel great, give them a ring. And ask for some spare forms next time you speak with someone

[Badger1]

department seems to have gone to pot all new faces it’s all phone calls now not be getting done before Christmas probably need to find new hematologist 👍🏻

[hunter5582]

It totally depends on your current status. uring dose titration, this would often be every 2 weeks. When you are relatively stable, it may be every 8 weeks. Perhaps longer if very stable.

If you are using venesections to control erythrocytosis, then it also depends on how stable you are. Checking your CBC would vary based on how often you are needing to use venesection.

If you have been waiting a week to hear back about a venesection when you are over treatment target, that is too long. Suggest you call in and insist on a prompt response. Assertive patients receive higher quality care. Passive patients do not.

Note that when I was using venesections to treat the PV, my doc had a standing order for me to get a venesection. When I was above target HCT, I just scheduled the appointment myself. Saved everyone time and trouble.

hope you get this sorted soon.

[RCBr]

I was always advised to have a blood test prior to my appt whether face to face or a phone call....and also prior to venesection. I have an appt every 2 to 3 months at the moment , but also have a cbc done once a month to see if venesection is required.

I've always had to book my own blood tests in at the surgery, and I chase my bloods results as required x

[Ratton]

Try and talk to a Haematology Nurse-(if they are available)-and ask her -Can you email Haematology dept ? I do that sometimes and I do get answers.

Re blood test -again would ask nurses about how many weeks between tests.I have mine 4 or 5 times year-! Good Luck-I am in U>K

[lhammy66]

the period between checks varies dependent on hospital and level of control but venesections are usually done pretty quickly in my experience especially when they need to get the haematocrit down. I suggest calling them and asking.

[ciye]

17 weeks is far to long, I would ring specialist nurse and find out why, I hope you get sorted soon and start feeling better.

[Annula]

Hi - mine are checked every 3 months

[Hopetohelp]

mine are usually 12 weeks

[ainslie]

Hct at 48 is too high, over 45 the risk is much higher, you need to organise a venisection if over 45, I don’t me an to concern you but better safe than sorry

[Wyebird]

hi I think it depends on how your bloods are doing. I’ve gone 8 weeks and on the rare occasion 16. I have ET. I also get my new apppintment before I leave clinic..

[Solyesh]

Dependent upon situation - after confirmation of diagnosis was once every 3 months - once wen ton cytoreductive therapy - was once every 2 months - trying to get dosage right on Peg it was once every 3 weeks - now that we hopefully have dosage and timing right it has gone back to once every 3 months

[gilded]

I’m treated at NHS hospital. When I saw the haematology consultant every month, I undertook a blood test in the week before the appointment. Now that the appointment is every 12 weeks, I undertake the blood test in the week before the appointment.

[Smoothie2020]

in the beginning I went every 2 weeks, then once proper dosage was determined I moved to 3 months, now at 6 months. I also go to my GP twice a year so I try to schedule her at the 3 month mark of hematologist appointment so that way my blood will get checked every 3 months.