When diagnosed in Jan 2012 my consultant said blood tests every 6 months but then in July my platelets had jumped from 600 to 800 so he said I had to have them every 3 months. In Oct they had dropped slightly to 700 and am due next test early Jan.
Just wondered how frequently other people were tested.
Thanks
Hi, I am usually checked every 6-8 weeks and i normally given a venesection, i would think every 6 or even 3 months would be too long.
Currently am being checked every month because my dose of HU has had to be increased and the effect is being monitored but I have never been longer than 2/3 months even when my platelets were 'normal'. I am of course older than you so that may make a difference but the gap between tests seems too long to me.
When all is well I go every two months, doc said I will do that for the rest of my life.
When increasing/decreasing dose I go either weekly, biweekly or monthly, just depends.
Greetings from Australia!
I believe that each case has to be treated very differently, based on treatment and other medications that you may be on.
My illness has now progressed to post PV myelofibrosis on my organs, I have bloods every 7- 10 days as I am also on warfarin, I have low platelets most of the time, I have witnessed over my 5 years since diagnosis that no patient is treated the same, this insidious disease has many forms and symptoms and each of us must take control of our own treatment plans and stay on top of our own management, this is the only way. Blessings to readers for a wonderful 2013, blessings to bring you all improved health and greater quality of life,
Cheers,
Jo
When first diagnosed had blood tests every two weeks and then four weeks, which stretched to every three months. I now have out patient appointment with haematologist for bloods etc every six months and halfway through that period I have blood tests done by local medical centre. My blood tests have showed issues well controlled with Hydroxycarbamide at present hence the relaxing of frequency of attendance at haematology clinic. Hope this continues. I agree it seems to require to be tailor-made for each patient.
Hi - Have had ET for 17 years (at least that was when it was diagnosed). In the early days I was checked every 6-8 weeks - when platelet count was around 800-900. As that remained static for a few years the checks were taken less regularly probably about 3 x per year. As with others when I started on HU the checks went back to the 6-8 week gap for a while until the right dosage was found (that was about 9 years ago).
I have been on 9 tablets a week for the majority of the 9 years - my platelet count hovers around high 300's up to low 400's with minimum of symptoms (am now 55). And am probably seen about 3-4 times a year. As others have said I think that your blood checks will be dependent upon which type of MPD you have, the progression, and various other factors etc. All the best x
I have ET and although my platelets are reasonably high I am considered low risk due to my age and other factors!
I would rather have tests every 3 months or so though as I worry what changes could occur in 6 monthly gaps!
Hi - I fully appreciate that - particularly as you are still newly diagnosed. Hopefully, as you are still low risk you are also fairly symptom-less. In some ways as so little was still known about our condition when I was diagnosed - ignorance was bliss - and I chugged along without any of the worry that comes with a better understanding of the condition. Interestingly, when I first came across the MPD site - that was when I really started to worry and became slightly obsessed with my ET. Nothing had changed, except that I understood for the first time what it was - and the scary word "cancer" registered for the first time! I was perhaps less curious about what my ET was - in the early days - than I should have been! However, because I was ignorant - I wasn't "defined" by ET. I am slightly more "chilled" about the ET than I was when I first found MPD voice (about 5 years ago) and I am extremely grateful for both their website and Healthunlocked, because I have a much greater understanding of all the MPD's and recognise that "on a scale of 1-10" I am really very fortunate to be on the lower end of the spectrum. Be curious, ask questions, keep informed, and if you are unhappy with anything ask for an earlier appointment. But hopefully as the years progress the worry and concern will subside a little, particularly as it is quite likely that as the research progresses (as it is doing very rapidly) all of the conditions will be able to be overcome through greater control or cure 
Take care x
I was diagnosed in 2004 following a routine blood test. Once my platelet levels had been brought down from 1600 to 300 - 400 I see the haemotologist every 3 - 4 months to monitor the levels, and so far, they have remained steady at around 400.
My husband has ET and has his blood checked every three months and, at his request (his platelets have been down in the 300s for a couple of years now), just sees the consultant every six months. He takes 3 500 hydroxyurea (sorry spellcheck says I've spelled this incorrectly but won't tell me the correct spelling! sorry!!) tablets a day and has done for 3-4 years now.
I'm 70 and was diagnosed 23 years back in 1989 with PV. In those days, not a lot was known about it and for the first year, I was put on HU. The factor that the hospital have always looked at more than any other is my haematocrit, or packed cell volume as it used to be called (and I think still is in some countries).However, the HU didn't help and needed to be supplemented with venesection - 1 pint off every week or two.
Then my haem said she had seen reports of trials in Holland and South Africa with Interferon which had shown encouraging results as regards bringing down the HCT, reducing the itching and preventing the spleen from enlarging. She said that, as far as she was aware, I would be the first person to trial INF for PV in the UK and she had no idea what the dosage or long term prognosis would be. Anyway, I agreed to give it a go and after 3-4 years we got the dosage sorted.
I've been on INF ever since and it has done all those things for me although apparently most people with this condition find HU OK. The dosage has needed to be adjusted from time to time, according to whether the HCT had gone up or down significantly. I go to the hosp for check-ups evey 3 months at present and earlier this year, my HCT had dropped from 42 to 37 (they regard 45 as the permissible maximum nowadys). This was the biggest change ever and would possibly indicate a change to myelofibrosis. They said that if this continued, they would need to do a biopsy to find out what was happening. Mercifully, by the next check-up, it had gone back up to 42; I really didn't fancy a BMB!
They have only ever made a passing reference to my platelets; they have never been above 150. Earlier this year they went down to 90 and, again, I was encouraged by the suggestion that a BMB might be necessary! Fortunately by the next test they had increased to 109. 100 seems to be the point below which they really start to take notice.
I'm part of a support group in the USA and they put out a digest every day which includes experiences of patients and sometimes input by the medical profession. I can see from that how fortunate I am to be living in the UK, with it's National Health Service. It has many problems but it's been a Godsend for me. I did a rough calculation recently and found that during the last 23 years I had received around £400,000 of drugs free of charge. In the absence of that, I would not have been able to pay for it and would probably have died many years back. This happens in the States where people are not insured and can't afford it.
Anyway, that's enough from me and it's interesting to read how the approach to treatment varies throughout the UK and other countries.
John
Hello John
I was wondering how you have been doing since you wrote this report on your condition? Do you think Interferon changed things for the worst. I too have high aematocrite and am worried!
Be well
Hi Kelly,
Good to hear from you! Soon after my original report, it was found that the Interferon was starting to have a reduced effectiveness so my haem put me on Hydroxy Carbomide in addition.
That helped for a while but in early 2013 I had an ulcer on my left ankle. No-one had ever mentioned to me that one of the possible side effects of HC was leg ulcers but at my next visit to the hospital, I asked my haem about it. She confirmed that this was a potential side effect and that I was obviously not tolerating the HC very well.
This opened the door to me being considered for a 5 year trial of Ruxolitinib, one of the new drugs and the only one that has stood the test of time so far. I was accepted for this trial, the main condition for which seemed to be that I was not tolerating one of my present drugs.
I am now in my fourth year with Ruxo and I can say that it has kept me more stable than Interferon, I feel better generally and people who see me tell me that I'm looking really well! However, I still have considerable fatigue. My haematocrit varies very little from one blood test to the next. At my last test, it was 41.2. A great plus for me is that it comes in tablet form so I don't have to inject any more. One possible side effect is that some patients find that their weight increases a bit. From an economic point of view, it's quite expensive so no-one really knows what will happen at the end of the trial period. I was told that each tablet costs around £400 and I take four a day! At present, the manufacturers are paying for it. So far, NICE have approved it for use with Hepatitis B but not for MPNs.
My haem tells me that there are still vacancies for the trial in some parts of the country so it might be worth your while asking your haem about it. It's called the 'MAJIC' trial but don't ask me why!
Anyway, that's quite enough about me. I would be interested to hear of your experiences since you started with Interferon if you feel OK about that. Dosage, length of time, etc. It's up to you!
Cheers,
John
Diagnosed October 2012, started with Blood test once a week for 1st four weeks then changed meds to Interferon, blood tests then every 2 weeks. See consultant 20th Dec now been asked to go back in 6 weeks Yay! Happy New Year All xx
Hi.
I would agree with the answer re everyone is different.
I have a blood test at my local clinic every 4 weeks so that "an eye" can be kept on me, and see my haematologist every 2 months.
I think it's important to have a blood test every 4 weeks - does no harm, keeps a watchful on things and puts your mind at rest!
Hi
was diagnosed with MF March 2012, initially saw consultant every 4 weeks with bloods at same time. gradually moved out to every 3 months, again with blood test few days before each appointment so results can be discussed at appointment.
Last time (Nov) was told if things stable at next appointment (Feb) will be able to have my appointments every 4 months.
It was mentioned initially would hopefully get to 6 monthly appointments with a blood tests 3 monthly to keep an eye on things.
But as not mentioned again, I just go with the flow, as am happy am being looked after at my hospital. Helen xx
Generally every 3 months if things are stable. More frequently if counts have changed significantly or treatment has been altered. Currently on 6 week tests to monitor effectiveness of new dosage of Pegasys.
When first diagnosed in January 2016, I had bloods twice a week. After 3 months, it went to twice a fortnight. When I was discharged from the cancer clinic and moved over to the "normal blood clinic" I have bloods twice every 3 months, usually one in before seeing Dracula and then one before clinic. The reason for this is if my platelets have rocketed, he changes the dose of my chemo before my appointment with him. My nickname is Casper in the hospital!
Rubyrubyruby;
I fear all of us are very different and so aren't our doctors and what they consider to be a good practice! I'm on aspirin and hydroxyurea 500 mg once a day.
I have PV, overproduce red blood cells, over the last two years I have gone from every 3 days, just a finger prick, to once every 8-weeks, and then a full blood test once every 6 months.
I did have a scare when my Hgb count was over 15, my magic number, six weeks after the last venesection. I had been staying under 15 for up to 18 weeks! So to have one so soon was a shock. Had the venesection and 6 weeks later I was at 17.2 the highest I had been in over a year. 3 venesections in a row, I had not had that over a year, I was freaked out. Had the venesection, called the doctor and they agreed to let me be tested the next week and I was at 13.1 ?????? How does this happen? Who knows our bodies are all different and behave to their own accord. I'm back to once every 8 weeks for a finger prick and every 6 months to see the doctor.
One thing I do is to track my levels each time they are checked to see how they are changing, then I can have an objective discussion with the doctor.
Good luck!
Seems quite a bit of variation. I have been attending every 2 months but over the year platelets have settled around 420 and now am just having blood tests every 4 months.
Will be interesting to see what we are all up to!
Other blood tests 
Do I have an MPN? 
How do you deal with the emotions linked with hospital appointments?
How do you cope with the fatigue.
For those taking HU, what kind of precautions do you take?
