Time between appointments

[Cassie11]

Does anyone else think that 11 to 12 weeks between appointments is a long time? I'm not due to see the consultant till May1and I am feeling more tired and had some muscle aches yesterday. I also have to wait for BMB results till then. I have ET jak2+. Stella.

[piggie50]

Hi Stella, my appointments for the last 14 years have generally been at 12 week intervals. More frequent when I started Hydroxy 7 years ago to keep an eye on how platelets were reducing and again the last few months when I commenced Methotrexate. I also waited the 12 weeks for my BMB results.

If you feel you need to be seen beforehand could you contact your heam’s secretary or the CNS?

Regards

Judy

[nivana in reply to piggie50]

My appointments are every 4 months. If I have a problem I can always speak to team and always have a blood request form at home to take to surgery if theye think I need an interim blood test.

[Hidden]

I have ET and I yearly appointments. Blood tests 6monthly.

[Applesnpears]

If your symptoms have changed since your last appointment it would be wise to contact your consultant for advice.

[mhos61]

Hi Stella,

My appointments are every four months. I’m happy with this as I’m stable.

At diagnosis I was given a card with my CNS contact number. I was told that I could contact her between appointments with any problems; I have never had to do this, but it’s reassuring to know that I have this support if necessary.

As Judy has already mentioned you could contact your team if you’re worried.

Mary

[Chaz1]

Your BMB results will take a little while in any case but 3 months is standard unless your levels aren't stable. Hubby initially at first hospital after 1st appointment after diagnosis went 6 months to his 2nd appointment. He's just gobe to monthly as his levels have spiked so needs more monitoring. If you feel your symptoms have changed give them a call & see if you can bring your appointment forward.

[Otterfield]

My appointments always used to be at 12 week intervals. Since I've been on Interferon, it's 8 weeks.

[ET500]

Hi I have blood test every 2mths with appointments every 6-12mths . My bloods are stable at the moment but if things change in bloods they ask me to come in . Also can ring for an appointment if I feel things changed .. When first diagnosed ETJAK2 +(4yrs) the appointments were every 3mths, so your 11/12 weeks seems about average. I’m in U.K. Scotland.. Hope things improve x

[mark382]

My appointment is usually every 12 weeks and have been for last 11 years. My haematoligist says at the end of my appointment that if I feel unwell between appointments to call them. I have a few times and have always been seen.

[hunter5582]

The answer is - it depends on what your status is. If you are stable and in monitoring only mode, then every 12 weeks would be fine. Some do not even need to be seen that often. Some need to be seen more often depending an what is going on. Having to wait 12 weeks to get your BMB results is not reasonable. There is no reason you cannot get them sooner. Options can range from a telephone review of the results to a face-to-face meeting with your doc. Every care provider I see has some version of a patient portal. Most post a lab results on the portal that I can access whenever I wish. You can also request a hard-copy of your BMB report. Bear in mind that you own the information in your medical record. It is your right to access that information whenever you wish. The provider has a legal and ethical responsibility to release the information to you on request.

[linphy]

My appointments are normally 12 weeks, if I have any problems I can contact them

Linda