Et and reviews

[Irishgal12]

just wondering how often people with et aspirin only are reviewed. My haematologist is late with my review this time and obviously I understand there are bigger things at the moment like covid but I worry my review will be 2-3 months late

[Rae25]

Hi Irishgal, I have ET and am on aspirin only. I see (or more recently telephone consultation) my haematologist every 3-4 months. How long has it been since your last appointment?

[Irishgal12 in reply to Rae25]

I was due in jan that was 4 months they say it now could be Feb or March

[Derwhits in reply to Irishgal12]

Hi Irishgal, I'm still having bloods done every 3 or 4 months, just in and out, followed by telephone consultation a day or two after

[Jonnymitts]

Hi I’m aspirin only, though I was supposed to start treatment last year but it keeps getting postponed because of covid. I usually see them every 3 months now 4 months. I guess you could see GP for a full blood count and if anything was out of range from your last appointment you could speak to your clinical nurse about it. I had some blood tests at my GP a week before the hospital appointment and let my nurse know and she said we can use those results as recent enough and just do a phone review instead of a face to face.

[Penny-10]

I am et jak2 positive on aspirin only. I mostly have a telephone consultation with my haematology nurse every 6 months. If she sees anything she wants to check on the blood test results she changes to 3 months. At the moment my counts are 780.

[rebeccaxxx]

Every four months but my platelets aren’t really stable so I think that’s why.

[hunter5582]

The answer is - it depends. It depends on what your ET status is. When on aspirin-only it could be anything from every few weeks to every 4 months (or longer). It also depends a bit on what you mean by being seen by the hematologist. I have CBCs done more often than I actually see the hematologist. I see the hematologist about every three months or so. CBCs are every 4 - 6 weeks depending on where the numbers are. I get a copy of the CBC results before I leave the lab. I review the results then if I have any questions I call the nurse or send the doc a note in the patient portal. They always respond promptly.

[Irishgal12 in reply to hunter5582]

Haematologist/mpn specialist I should get seen soon think they are running behind x

[Tico in reply to Irishgal12]

I was reviewed every 3 months but in the last year as my counts have become a bit unstable again I was reviewed every 2 months instead. But because the hospital I attend as become overrun with Covid cases most outpatients appointments have been cancelled or pushed back. I was due my reveiw in Jan, now got a new appointment for 2 weeks time if its not pushed back again. I'm on Hydrea and Clopidogrel. Tina.🤗

[hunter5582 in reply to Irishgal12]

Hope they get caught up soon. If you have a specific concern, you can always get a CBC done without seeing the doc. Can always get in touch of something odd flags.

[Irishgal12 in reply to hunter5582]

Thanks to be fair they are only a week late at the moment

[hunter5582 in reply to Irishgal12]

Well that is not bad all things considered. On the whole, are you being followed as often as you think you should be?

[Irishgal12 in reply to hunter5582]

Yes normally every 4 months but they did say last time it may go to 6 months

[hunter5582 in reply to Irishgal12]

Monitoring protocols vary when on HU. Here is one protocol from the UK that stipulates every 4 months is the maximum when blood counts are stable.

nssg.oxford-haematology.org...

If counts are not stable and the dose is being titrated, then every two weeks is the normal maximum.

So the key is whether you have been on HU long enough to know whether you are stable at this point.

[Irishgal12 in reply to hunter5582]

Thank you am only on aspirin atm

[hunter5582 in reply to Irishgal12]

Age related brain fugue!! Thought you were on HU. 😜

[wotan10]

Greetings from Fleetwood Lancashire.13 weeks bloods and phone consultations.

ET for 4years counts now normal.

Remain on my Asprin, and hydroxicarbimide 2per day.

When you next have your consultation ask for a reply to your time difference queries.

[Mood2020]

I was last seen in October and supposed to be reviewed in jan but it’s been changed to febI have ET on aspirin

[SueYoung]

Hello Irishgal,I'm ET and aspirin only, I live in Scotland. I was reviewed annually by my haematologist and my gp in the 6 months between appointments until this year when I reached 60. Now I am reviewed every 6 months by my Haematologist as my GP surgery is refusing to do bloods. My platelets remain pretty stable at the moment around 600 so no HU needed at the moment thankfully. During covid I have had one phone appointment with my haematologist and one face to face when covid cases had dropped in October.

Sue

[paintbox]

Hi Irishgal,

Up until my last appointment in Dec I had been seeing my haematologist every 3 to 4 months (ET jak2+ aspirin only) however, because my platelets have been stable at around 690ish for the last 12 months, I will be having appointments every 5 month now whilst I'm stable but it is constantly reviewed.

I imagine there are lots of impacts on wait times at present, both our own health and the health service. Hopefully you'll be kept informed & get the reassurance of an appointment soon.

[Wyebird]

Hi, fir peace of mind why don’t you contact your doctor and request a blood test.

[Irishgal12 in reply to Wyebird]

Gps are so poor atm with covid they won't do anything unless your dying

[Wyebird in reply to Irishgal12]

Oh dear, mine is at like that at all. I have a blood nurse. Do you? When I’m feeling rough I request a blood test. She emails me a letter I show the doctor and they act.

[Irishgal12 in reply to Wyebird]

Thats really good where r u located

[Wyebird in reply to Irishgal12]

Uk I’m with an amazing team. I think it’s because I become so bad I’ve gone to a and e a few times. I’m more in control now. I’m really sensitive. Anything above 425 I’m breathless, light headed, lethargic, worst scenario couldn’t talk and too tired even to get a drink. Even before Covid i’d play a game in clinic . I was wrong once lol

[Irishgal12 in reply to Wyebird]

R u on medication I personally feel am only a number

[Tico in reply to Irishgal12]

We are only a number at the moment Irishgal12, and I fear its likely going to stay that way for some time. I'm fully expecting my new appointment to be pushed back again, I will be surprised if it isn't. Tina.🤗

[Wyebird in reply to Irishgal12]

Yes aspirin alternative simvastatin and hydrox and anagrelide. Combined i think it’s considered a large dose

[Bears23]

Im in the US, go every 3 months. Just had a Ultrasound on abdomen, recheck making sure everything ok and spleen didn’t enlarge. Hope all is well.

[Irishgal12 in reply to Bears23]

Really? I havent had ultrasound or spleen checked since diagnosis a year ago its always bloods

[Bears23]

I did one early in diagnosis that they use as a baseline (sort of like they do with bmb).

[Runner999]

Just make sure you push for an immediate appointment if you notice anything unusual about your health that could be blood related - new levels of bruising, strange feelings in legs or abdomen/heart area. Aspirin is just thinning your blood until age or platelet levels suggest aggressive treatment is necessary.

[Irishgal12 in reply to Runner999]

Thank you thats my worry platelets being left untreated

[Runner999]

What I meant is that a month here or there is no worry ; unless you have a particular reason to be at risk from a clotting incident.