How is your MPD managed and what are your experiences at the hospital/ check ups?

Hi,

I was diagnosed with PV in January of this year when I was 38 weeks pregnant, my diagnosis was then changed to ET after a few months and then in the last month it has been changed back to PV as my Haematocrit was 51% andplatlets 768.

I have had 5 or 6 appointments with the hospital during this year and have seen a different person/ haemotologist at every appointment, they all seem to sing off different hymn sheets and to be honest I always seem to go to my appointments feeling one way and come out feeling the opposite. For example I attended one appointment and asked for more more information about my condition as the only information I had was a handout I was given at the time of diagnosis from Macmillan and the info I had read on MPD voice. I was told not to worry, to carry on taking my aspirin daily and nothing will change until I am over 60 ( I am 34 now). I felt quite happy at that and left feeling really positive.

At my next appointment I saw someone different, who changed my diagnosis to PV, advised venesection there and then (which I did) and also talked about meds, as you can imagine, I was quite shocked after being told nothing would change until I am at least 60.( I still don't understand how someone can make such a bold statement).

I have been to some appointments and have come home feeling like I am over reacting about my condition after asking questions, then other times I go feeling relaxed and reassured after previous appointment and come home feeling like I perhaps haven't taken my condition as seriously as I should - it is really frustrating and confusing.

Anyway - to get to the point of my actual question, I see some of you talk about a named MPD nurse for your questions ( I don't have one) and also, do you all see the same person at your check ups or is it always someone different like me?

I feel as this is something I will have for the rest of my life, it would be nice to have someone who I could have some sort of patient/ specialist relationship with and not see a different face every time.

It would be interesting to hear some of your experiences and understand if they are the same or differ to mine.

Andrea

:-)

23 Replies

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  • Hello Foss33,

    I have seen the same Haematologist every time , except once. Then I told them that I wasn't happy and that I wanted to see the same Doctor every time. It was a fairly newly qualified doctor that kept telling me that I had side effects I never have had but she insisted when I tried to tell I didn't!She also told me that it was written down in my records. It isn't as I have checked since then.

    Now, I am very happy with my doctor there, but I don't have a special nurse either.

    I totally agree, it is better to see the same doctor, unless you are unhappy with him or her.

    The initial information I, had wasn't a lot really, but I wasn't too bothered at the time. I found it quite al right to learn bit by bit as I am good at finding out things myself. Also, I have some relatives in the "health-business", so got some information there.

    My E.T has been steady and I am taking my medication...plodding on....

    Hope this was a little bit of an answer...:-)

  • I only been diagnosed since July. I was in hospital to have an operation, got all the way to theatre, only to be told that they couldn't go ahead with op as there was something wrong with my blood and would have to see a haematologist. This happened 2 week later. This was where I was told I have ET. Very nice doc explained it all to me and gave me some leaflet about it. At first it didn't sink in. Next appointment I saw the same doc, very help, but she was going on maternity leave so I would have another doc for my next appointment. He ok but not interested in side effect, just blood results. Also not bothering about doing other test like BMB. So I really have only be diagnosed by a blood, I do have a specialist nurse who is very nice but very busy. See the same doc is good but it is sometime better to see others as they might be more experienced or no more about the condition as it is rare.

  • Hi Andrea

    I see the same consultant but I only because went private. If on NHS I could see any one of the team but would have the access to a specialist nurse, which I don't have now! I am seriously considering being referred up to London to the specialist clinic but on last bloods my count had dropped a little to 748 so other than aspirin I am not on any other meds yet. I have thought that as soon as my cons starts talking about other meds I may move to someone with more knowledge of our condition.

    Hope this helps

  • Andrea,

    I can't tell you how much I empathise with you.

    I was diagnosed with ET in 2003 and have had ongoing issues with my care.

    For seven years I attended my local hospital and put up with seeing a different haematologist at every appointment. I now attend a hospital with a specialist in MPN's 70 miles from where I live.

    The problem MPN patients have is I think we have an invisible, chronic condition are perceived as healthy and stable relative to other patients and as a result it can be difficult to get our very real and sometimes debilitating health issues taken seriously.

    I also feel little regard is shown about how much these conditions affect us both emotionally and psychologically.

    I think the ideal situation would be to have access to a Clinical nurse specialist in MPN's but unfortunately there aren't many in the UK and as a result most MPN patients accept the compromised service we receive at the moment. It's also unfortunate that it is only when we have a problem that the inadequacy of the present system is shown up so many people don't realise just how much better it could be.

    As it happens I have been discussing this very issue with a a fellow forumite and we both thought it would be a good idea to get some sort of lobby group to increase the amount of MPN Clinical nurse specialists but I don't really know exactly how to go about this.

    I think the first thing would be to raise the issue at future MPD Voice forums ?

  • I have a specialist nurse, but it seems to be on paper alone!

  • Re getting more MPN specialist nurses. You could try lobbying both your local commisioning group and/or the oncology department of your local hospital. As there would not be enough work for them to do at 1 hospital and training would be costly think how such a nurse could work for say 5 different haematology departments in a limited area and lobby all the relevant commisioning groups. You need to maybe ask your haematologist how many MPN patients they have who would benefit from such a service. They may even be willing to tell you who to write to at other hospitals. Working in the NHS I know how tight money is so you will need to make a well argued case for any commisioning group to even consider discussing it with thier neighbours.

    Good luck

  • Hi, the speciaist nurse could perhpas cover a single hospiatl but deal with a range of haem patients with probably the highest number being chemo patients. Wonder if it;s worth approaching Macmillan, who pump-prime a number of these posts?

  • I have seen 3 different haemos in 1 year and the hospital has yet to appoint a permanent haemo since the previous one retired. There does not appear to be a specialist nurse (but I too would appreciate access to one).

    I asked my GP for referral to an MPD specialist and was told this was going 'out of the area' and would almost certainly be refused on grounds of expense. He advised me to ask the hospital haemo to refer me. However, on the next visit after that, I saw a young haemo who actually knew something about ET. ( How do I know? She mentioned Claire Harrison!). She was able to discuss my HU dose and agreed I should try to reduce it. She was very careful about monitoring this and after 2 months agreed I could continue with 500 mg every other day. Since then I have not liked to ask for a referral because I don't really have any problems I need help with - I 'm saving the request until I do.

    Foss33, I know exactly how you feel. Hope you get to see someone who is both empathetic and knowledgeable. Remember you can ask for a referral. Good luck.

  • this sounds very similar to my experience, is your retired haem by anychance Dr Guy Lucas? Ive seen my new heam 3 times now and have been very impressed with her knowledge and she also mentioned Claire Harrison to me as well.

    It's so refreshing speaking to a Dr who for once knows more about ET than I do as a patient.

  • My Wife has ET & was told by the doctor at the hospital there was not much he could do for her.My reply was thats not good enough,after a silence he asked if i would like to go to ST THOMASES HOSPITAL & see Dr Claire Harrison which we did. This Dr is one of the best if not the best in the UK

    Trust me

    regards EL CID

  • Interesting question. I was diagnosed with PV over 6 years ago by a very jolly haematologist who made positive noises about the recent JAK2 discovery leading to a cure and also told me that I should reach 70....all being well. After initial diagnosis I was seen by the same haematologist up until 3 months ago. He then suddenly left for Australia. I have since been seen by 2 different locums.

    The first was basically carry on as before. But after my last visit I left feeling a bit disheartened, for the first time in ages, as I was told that my red blood cells were becoming smaller and that she was going to up my Hydrea rather than venesect. This was in response to her asking me whether I felt any better after venesection: I said that I noticed no obvious change as to how I was feeling. She then decided no venesection, despite my numbers being a little high, because this was causing my red cells to becaome smaller. it would also lead to anaemia and greater fatigue. It was a change from how I'd been treated for the past 6 years; during that time my treatment had followed a very regular pattern: haematocrit up, then venesection, haematocrit ok, then straight home, and no change to my Hydrea which was low at 7x500mg/week.

    I will see yet another doctor next time. Part of me thinks that at least I'll have the benefit of several diferent points of view and that I'll learn more about this strange condition, and part of me realises that there is not a whole lot that can be done; the doctors don't have a clear cut remedy or an especially good range of treatments available especially so wihtin the financila constraints of the NHS. In America there is a significant debate between the top Haematologists as to which first line treatment should be used- Dr Teffari v Dr Silver in particular are at odds on this.

    If you can be seen on a regular basis by a doctor in whom you have confidence then I think that is important for your general well being; it is reassuring to feel that you are being 'well looked after' . Good luck.

  • I have had PMF since 2009 and have seen the same Haemo ever since - except when he was forced to retire at 70, last November, They had to bring him back in February, due to staff shortages!

    At the very outset, I was given a plastic "business card" with the cancer nurse's details and a 24 / 7 contact number. She is always in attendance at my 2-monthly appointments. So I consider myself lucky under the circumstances!

  • Thank you everyone for taking the time to share your experiences, it has been interesting to hear your stories and understand how different they all are.

    I do agree with Etphonehome with how MPN's are perceived and also about access to an MPN nurse.

    Because I have a young baby I haven't been able to attend a forum this year but would hope to attend one in the near future and as you suggest raise the issue there as I really do feel strongly about consistency being very important.

    If anyone else would also like to add to this thread and share your stories too it would be good to hear from you too.

    Take care all

    Andrea

    :-)

  • My experience has been more positive the first consultant I saw in may was a locum, the main consultant being ill. Until she came back I was always seen by the consultant. I was introduced to the Haematology Nurse as soon as the diagnosis was confirmed, she informed me that my case had been discussed on a video conference with the regional experts and the decision was taken to manage with venesection at present. I feel able to contact the nurses for advice whenever I need to. I saw the main cosultant this week I feel she is approachable. I contacted this Forum on the Nurse's advice and I appreciate it very much. If there is a lack of expertise in the hospital you have been referred to a person surely has the right to be referred to a centre with more expertise.

  • Although I was introduced to two specialist MPN nurses at my local NHS hospital - and they both said to contact them during working hours with any worries/concerns - I was, at the time of being diagnosed with PRV just under two years ago, being looked after by one haematologist. I didn't have the heart to contact the two nurses as they were clearly run off their feet in what is an unbelievably busy department (at that time I simply never appreciated just how many blood related illnesses/problems existed) and was happy in the hands of the haem. This went on for about five appointments in as many months - yet I haven't seen her since. I've been seen by other members of 'the team' each with differing thoughts and idea's and barring one of them, not giving the impression of being as interested in how I've been doing. With the original doctor she wanted to know the ins and outs of a gnats backside and filled me with confidence for the journey ahead. Now, although I'm out at three-monthly checks - and long may that continue - I never know who I'll be seeing or what reaction I'll receive to my questions other than my feeling that I'm taking up their valuable time. I'm not the sort who wants to rock the boat but guess I'll have to grasp the Snickers bar and look to myself for a change ;-)

  • Hi Andrea, I ended up asking for my care to be transferred to a hospital that has an MPD specialist. I was so tired all of the time and had hangover headaches every morning without the pleasure the night before. I was having a variety of side effects and yet my doctor although very sympathetic, transferred me to the "Hydroxy" nurse telephone clinic as all my complaints were being blamed on either the medication or the ET and I had to live with it Since my care was transferred I have never looked back. My new consultant gave me a full MOT and discovered that I also have sleep apnoea. Now I am being treated for this my headaches have gone and although I still tire easily it is 100% better than it was.

  • After a year of too and froing to a large teaching hospital we have just about got my counts right by changing/altering medication and dosage, I am now quite stable. I still get symptoms from time to time which last a few days and are really quite dibilitating, but I am told categorically they are nothing to do with ET and I should go to my GP. My appointments have now gone to every 3 months and at the last one I saw the nurse only, no Heam. I don't regard myself as a hypochondriac and I do not pester the hosp or my GP, but I do feel they don't take my symptoms seriously and I take solace from the forums and know that these symptoms are not my imagination and this helps me to get on with it. Besides when I was diagnosed last year, I presented to my GP with symptoms and it was as a result of these that tests were done to rule out other conditions and they gained their diagnosis of ET, they also said I was bordering on PV, which incidently has never been mentioned since. I was also Jak-2 positive.

  • Hi Andrea,

    i was diagnosed with Et 5th July 2011, my Gp noticed after a blood test that my platelets were high or dangerously high as he said. they were 890, so he took more bloods my platelets were 955 so he referred me the hematologist telling me that it might be nothing or something serious, but not to worry till i had my results. i had more blood test at the hospital and i was then informed i was Jak2 positive and had ET a blood disease and i would have to take medication for the rest of my life! he gave me a leaflet that said at the top blood cancer. i left the hospital with my husband Stunned, i couldn't think straight and admit we both had a good cry. on reflection we both think things could have been explained a lot more clearly. i had to do my own research and have now come to terms with my hospital visit every 8 weeks. i was given Hydroxycarbamide 500mg for 4 days and 1000mg for the rest, i found the migraines i had suffered from for over 5 years stopped once my platelets reduced they are now 387 i take 500mg daily and 1000mg on sundays, i do suffer fatigue sometimes and i have since been diagnosed with sjogrens syndrome and interstitial cystitis which are auto-immune illness's and also rare! i think it must be my new hobby collecting rare things :) i did ask for a referral to see an MPD Dr and i will be visiting Dr Steve Knapper on the 19th Oct in Cardiff. i just met him at the Cardiff forum and he seems a really nice person so i am actually looking forward to my appointment, its just a shame i have to travel so far.

    Gill

  • Hi I live in Pembroke and my local haem service appears not very specialised so far as MPN is concerned. I am trying to get refered to a more speciaist service but it's "out of area" so it will cost the local NHS more. Thinking about a private referral every so often. Would be v interested to hear how you get on with Steve Knapper: would u let me know? Jane

  • I guess I must be one of the very lucky ones as I see the same haematologist every time and they are really apologetic if I need to see them between appointments and I have to wait a few days. All scans were done within 6 weeks of first appointment. Can't fault my treatment.

  • The initial shock after diagnosis with ET is a massive blow. I was handed the Hydroxycarbamide information sheet (With ALL its possible side effects!) and another brochure mentioning ALL the possible MPD's. I was very scared. Initially I didn't know what to do, update my will, go swimming with dolphins or what! Then a nurse chatted to me and put it all into perspective.

    The fear of the unknown is the worst fear of all, that is why this site is such a good thing for newly diagnosed, and old hands alike.

    Also the old sayings"It's good to talk" "A problem shared is a problem halved" There are many people who are a lot worse off than me. Enjoy life, this is not a dress rehearsal!

    Be strong.

  • Hello Andrea

    I guess you are in the UK? I so agree with you about having a trusted specialist. It's a complicated balancing act, and, although one can have a relatively normal life with this disease you need good, appropriate treatment. I suggest you make an appointment to talk to your GP ie a longer-than-5min appointment, and ask to be referred to a named specialist in leukaemic-type disorders, blood cancers. I have seen a list of specialists somewhere, perhaps MPD Voice? I have also read that Interferon may be appropriate for your age group, but only if your levels can't be controlled with venesection. Low-dose Aspirin is also important. And a healthy diet/exercise. Good luck!.

  • I have only recently been diagnosed with MF. I had been having tests done privately (as I have health care through work, although I do live in UK) and the hematologist had been pretty convinced I had ET due to higher platelet levels until he did a bone marrow biopsy. As he had been talking about ET, I had done quite a bit of research and was absolutely gobsmacked when I received A LETTER to tell me I had MF. I was devastated but rang him to make an appointment as he had said on the letter and despite being private still had to wait 2 weeks for him to see me which were the longest 2 weeks of my life. At the appointment he basically said oh everything is fine, nothing to worry about, handed me a macmillon information sheet and told me to go back in 6 months for further blood tests. Needless to say I am now moving to a MPN specialist even though this will be on the NHS, I still feel I will receive better care and understanding. Here's hoping!

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