Not sure how I feel

Hi all

Saw the haemo today and officially diagnosed ET Jak2+. In a way I’m glad there is a reason for the way I have been feeling for the last four years but in another way I felt rather deflated and upset. The consultant I was supposed to see had left and had been replaced with a locum, who said he probably wouldn’t be around by the time I go back in 8 weeks.

Having read a lot of posts here I was armed with quite a few questions but after he said the widespread pain and fatigue I experience was definately not related to ET I rather switched off. I also asked if it was advisable to keep taking HRT pills (Premarin) as I had read on patient power that most haemos weren’t keen on the idea and recommended stopping it. He said there was no reason not to keep taking it and didn’t seem at all bothered. Now I’m confused! Any advice on that one?

The nurse was really nice but said I would have difficulty having my request for free prescriptions accepted as ET was a pre-cancerous condition. Not what I’ve read here!

I am booked in for a bone marrow biopsy in a week so the hospital have a base line assessment of everything - what fun!

The main reason I think I felt the way I did was the thought that every time I go for an appointment I am going to get another locum and won’t get any continuity. Can I request a referral to another consultant? I am only 45 minutes from Addenbrookes in Cambridge which seem to have a good MPN team - does anyone go there, and if so, would you recommend them?

Thanks for reading

Gill x

55 Replies

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  • Hi Gill,

    It is obvious from your post that neither the heam or the nurse have enough knowledge of MPN's. I feel so sorry for you, you don't deserve this. Ask your GP to refer you to Addenbrookes, I'm sure you will get better treatment there. I am in a different part of the country but I'm sure there are folks on the forum that attend Addenbrookes. Don't worry about the BMB I had one 4 years ago before I started Hydroxy, it gives a good baseline for the future and I've not had one since.

    Good luck with your referral and let us know how you get on.

    Very best wishes

    Judy x

  • Thanks Judy.

    I thought that if I was attending the Macmillan centre within the hospital they’d be right up there but maybe not. Thank you for the advice, esp over the BMB. It ended up my choice in having it as both the doctor and the nurse kept saying I didn’t have to have it if I didn’t want to! Of course I would rather not but having a base line seems more important than a sore butt for a day or so!

    Gill x

  • Hi. Definitely ask for a referral. You are entitled to. (Just as you are entitled to prescription fee exemption etc etc. ) Seeing a haem team that really understands MPNs makes the world of difference. I just wonder whether it is worth holding off the BMB until you get transferred. Just a thought. And if you have to go back to your current team, perhaps go armed with those excellent MPN Voice leaflets! Good luck.

  • Thanks Ebot. I’ll definately ask for a referral. Our local hospital isn’t the best - they admit they struggle to keep consultants and I have already had a bad experience there when my daughter was born (nearly lost her due to their negligence) - admittedly that was 20 years ago but it sticks in the mind. There seem to be so many out there who haven’t got MPN knowledge and to be quite honest I’m fed up of having to be the proactive one, trying to find out how best to go forward. It would be a breath of fresh air having someone onboard who knows what they are talking about! Like all of you lovely people on here ❤️

    Good idea about the BMB. I noticed the Jak2 test I had done was requested by Addenbrookes so maybe they will have taken note and it’ll be easy to transfer to them.

    Gill x

  • Sounds like you may already be on Addenbrokes radar. I hope you have a sympathetic, on the ball GP. If it’s any consolation when I was first diagnosed I went (privately) to see a leading heam at a major London hospital. Having run the initial tests and come to a diagnosis he advised me to seek a second opinion. I was a bit taken aback, almost embarrassed, because he was a really nice guy and very well regarded. He said he was very happy to look after me but if it was him he would go and see Prof Harrison at Guy’s. I’m always grateful when people admit they don’t know enough - even (especially) those at the top of their game. Keep us posted. 🙂

  • Sounds like your haem was humble enough to suggest you had a second opinion - I wish all of them did that! My gastroenterologist seems to know more about MPNs than the haemo I saw! I’m going to see if I can speak to my GP surgery today to see if any of the doctors there know anything about ET. If not, I’ll be asking Maz to send me lots of literature to educate them!

    Gill x

  • Addenbrookes key in discovering the JAK2 link so should be top notch re the latest research and hopefully treatment. Which hospital are u going to at the moment?

  • QEH in King’s Lynn 😢 My brother in law was successfully treated for leukaemia at Addenbrookes, with the smaller follow ups at the QEH. I therefore thought I’d be in the right place, but maybe not!

    I had read that Addenbrookes seem to be ‘up there’ in MPN research So I do feel lucky I’m close to Cambridge.

    Gill x

  • QEH a nice hospital (used to work there) but lacks critical mass in specialist areas e.g. MPN. In theory if they manage to recruit a new/young haematologist who builds clinical links with Addenbrookes, you'll be fine: good treatment and easier to get there and park etc. But will QEH manage to recruit? Perhaps worth trying to find out or give them a bit of breathing space? Addenbrookes, in my view, is the place to be if u have something really critical like your bro-in-law, but it's a complete pain getting there, parking etc if u are going to have regular appointments for years and years to come. I'd seriously consider staying at QEH even if u go for a second opinion at Addenbrookes!

    Good luck

  • Thanks Jane. QEH is certainly easier to get to - when there are parking spaces! I think they do have links of a kind with Addenbrookes - maybe a satellite clinic or something. It might be worth me seeing if they do that for MPNs. The QEH do have problems recruiting - outer West Norfolk isn’t exactly at the cutting edge!

    Thanks for your advice - looks like I’ll be thinking a lot over the next few days, when the brain fog clears!

    Gill x

  • Hi Gill,

    I agree with Judy and Ebot in regards to a referral to Addenbrooks. I also would hold off with the BMB for now. Addenbrrooks may not think this invasive procedure necessary, considering you have the Jak2+ gene. I’ve read before that a bmb just for a baseline is controversial, as the treatment remains the same. I suppose there are differing views between haematologists, so I’d wait to see what Addenbrooks views on this are.

    I know how you must have felt at your appointment. When I was told I had the Jak2+ gene by a wonderful haematologist; I felt comforted by the fact that I was going to have a good relationship with this haematologist. I’ve never seen her again since, or any other haematologist for that matter. I see a nurse who said that I would only see the haematologist if she thinks it is necessary. I must say this was a bit deflating, I would be happier if I saw the haematologist at least once a year.

    Appalling this nurse you saw doesn’t recognise ET is a cancer. It doesn’t surprise me though, as my work doctor didn’t either. I had to bring a copy of my haematologist letter which said ‘this is deemed a cancer of the bone marrow.’ He actually said, ‘I’ve been educated today.’ A lot of the medical profession are unaware that the WHO recognised MPNs as a cancer in 2007 before this, they were a blood disorder.

    Good luck in your choice

    Mary x

  • Hi Mary

    Thanks for your reply - you are all such a well of information. I must say, if it wasn’t for this forum I wouldn’t have known half the things I should have picked up on. It makes me so cross that so much misinformation seems to be spouted by people who should be better educated in their supposed field of expertise, even if MPNs are considered rare. It strikes me that a lot of people here have regular appointments with their haemo to keep track of their progression. Have you questioned your lack of follow ups with yours?

    Gill x

  • No Gill, I haven’t questioned it for now. This is because my counts remain stable and I don’t suffer too much, other than fatigue which seems to have diminished greatly, (wondering if that’s related to circumin).

    My haematology department is a ‘specialist nurse’ led clinic, which I attend every four months. I just hope if things progress that I would see the haematologist!

    I think a lot of people on here also attend specialist nurse led clinics.

    Mary x

  • Hi Gill, I am so upset and frustrated by what you have just told us that my eyes are watering and I want to scream! Ehugs to you😚

    I take HRT and as far as I know it's OK ( not stopping anyway. In enough misery! ) There will be no problems getting free prescriptions, just ask for form at the doctors. I had a bmb and it's absolutely nothing to worry about, but was told afterwards that I didn't have to have it because CALR proved it. You are jak2 so perhaps you don't need to have this at this stage.

    Are you going to the conference in London? My husband and I are. We are desperate to get some reassurance that I am not a menopausal, hypercondriac of a woman.

    Regards Carole xx

  • Hi Carole

    I left it too late to book into London but will be watching it online. Shame as I had hoped to go for the weekend and stay with my brother and his family, who are putting up my daughter while she looks for somewhere to live. I’ll just have to book another weekend with them as the conference sounds too good to miss and I don’t think I could wait for the video afterwards (impatient?! Me?!).

    Thanks for the advice on HRT - I don’t fancy the “is it me or is it hot in here” episodes ever again! Mind you, my husband would certainly appreciate those hot water bottle moments now it’s cold at night!

    I think my reason for feeling so disappointed yesterday was the thought that I would receive loads of support and advice and instead came out with more questions and that awful feeling that I had had a wasted trip. Looking back, it wasn’t wasted as at least it was confirmed I am Jak2+ (after having to tell the haemo the whole reason for being there was for those results!)

    The nurse did give me the form for free prescriptions but she has written by the ‘cancer’ box “pre-cancerous” which she reckoned would probably make me ineligible. Time to get the tippex out?

    Gill x

  • Hi Gill, just wrote you an email but pressed wrong button! Too tiered to do it again! Apart from, yes get the tippex out. Xxx

  • Absolutely Gill...

    Your story is so infuriating!

    There are so many ill-informed (medico) people when it comes to MPNs, their treatment regimes, and the FACT that they are now considered to be a type 'Blood Cancer'.

    Sometimes being us is so very frustrating my heart & spirit is w/ you girl...

    Bon chance

    Steve

    (Sydney) xo

  • Hi Steve

    Thanks for the well wishes. I now know how a lot of people on here feel. Thank goodness for MPN Voice!

    In a weird way I’m glad of the diagnosis as I was beginning to wonder why I was feeling the way I was when all tests were coming back negative. I even had a consultant querying if it was all in my mind!!!! Now I know I’m not mad, well, as mad as some thought!

    Gill x

  • Been there too Gill... :)

    Best wishes

    Steve xo

  • I had a similar incident at my local hospital and transfered to Liverpool who have an mpn expert. Many haemotologists sadly seem to lack mpn knowledge. Definitely request a second opinion, you have to aim for the best care you can get.

  • I agree - when it comes to our life, we only have one and I can’t see why we can’t demand the best care out there

    X

  • Hi, I'm new on here, being treated at Norfolk and Norwich hospital for PV Jak2 positive. So far the treatment there hasn't been too bad. Wouldn't it be more convenient for you to go there rather than Addenbrooks?

  • Hi Gill

    Sorry you are feeling so deflated after your appointment, it certainly seems as if the locum wasn't as on the ball as some.

    However, I attend Addenbrookes and in the four years I have been a patient there I have only seen the same dr on two occasions... I think my original consultant may have retired but no-one has told me that! Last time I felt so fed up after the dr breezed in, told me my counts were fine (without telling me what they were) and clearly thought that was the end of the matter, that I completed a comments form saying that I felt like a number not a person in this clinic.

    It is such a contrast to Guys where I am recognised by the consultants even if I have just popped back for research.

    So, yes Addenbrookes is I am sure up there with research and knowledge, but that doesn't necessarily make them patient friendly!

    Maybe a 2nd opinion with some arms length linking with QEH...? Addenbrookes were at one time supposed to be setting up a nurse led telephone system which meant that if all was stable one wouldn't need to sit and wait to see dr each time, but I don't know what has happened about that.

    Do hope you feel a bit better soon, and get what you need.

    best wishes

    Fee

  • Hi Fee

    Thanks for that. King’s Lynn is so close to Addenbrookes that I’m sure there must be some form of shared knowledge between them. I have a brother in law and sister in law who are paramedics at King’s Lynn who have said they can investigate what sort of links the two hospitals have, especially with regard to haematology.

    The lack of continuity does frustrate me - when I was referred to rheumatology a couple of years ago I must have had 5 appointments and each time I got a different consultant and had to go over my ‘story’ each time. Needless to say, each doctor had different opinions on what should be done!

    Gill x

  • Hi Gill,

    I just wanted to chip in and say re HRT I'm still taking mine, when I was first diagnosed back in January this year with PVjak2+ I asked and my haematologist said no problem, as long as I keep all appointments to be monitored.

    Also I had a BMB in April, was absolutely fine and am here to tell the tale 😁

    Definitely try Addenbrooks, But if no luck there try Ipswich, the Haems there are fantastic and liase with professor Harrison.

    Hope you start getting better treatment very soon, there's nothing worse than having questions and not having faith in the people that should know the answers.

    Best wishes

    Jacqui😊

  • So agree re the haematologists at Ipswich - brilliant, brilliant, and have been with them over 4 years and have had wonderful care; also they liaised a lot with Addenbrokes, when I proved a bit 'difficult to treat'....(reacting to everything!).

    Can I put in a word for Turmeric, all am taking, apart from vitamins, and it is absolutely keeping my platelets the same and I feel great!

    Best wishes to everyone on these posts, especially you,

    Tinkerbell

  • Hi Tinkerbell

    I tried to pm you about 'if we shared the same haematologist' as wasn't sure if we could say it in posts, but every time I pressed send, the message disappeared.

    What turmeric do you take? Is it the one with black pepper?

    Wonder if we've been in the waiting room at the same time at the hospital haha!

    Keep well my friend

    Jacqui 🤗

  • Hi Jacqui, I take curcumin from aavalabs which contain piperine. I order through Amazon and take 2 caps in the morn and 2 pm. I've been taking them since middle of Aug and have gone from couch potato to painting and decorating. I have MF so it's unlikely that I'm improving through any other method other than the curcumin. I had absolutely no expectations and am a real doubting Thomas but have to say no other reason why I feel so well. Also had a Sun holiday with my 2 daughters and gr daughter and kept up!!!!!! Doesn't work for everyone as we are all so v different but worth a try. Good luck.

    Pat

  • Thanks Pat,

    I'm going to order some!

    That's fantastic what's it's done for you!

    I'm not having a good time at the moment, so I'm up for trying anything, and I've heard so much good about curcumin.

    I hope it carries on giving you great results.

    Best wishes

    Jacqui 🤗

  • Guess you would need to go through Maz re haematologist....the one I see explained they can never be named on the Forum (for understandable reasons)....aren't we fortunate though! I am usually there on a Tuesday, now monthly instead of fortnightly, so that is real progress!

    Take one with black pepper (organic) 600 mg. Saw haematologist yesterday and she is happy for me to continue, as long as platelets don't exceed 1000. Now hovering for a few months around 830.

    Very, very best wishes, Tinkerbell

  • I think it's ok to private message to talk about haematologist s etc but yes I was told same not to name person, which we haven't so all ok there haha!

    I'm there next Tuesday, missed you by a week haha!

    Anyway thanks re black pepper!

    I'm going to give it another go.

    Take care and very best wishes to you

    Jacqui 🤗

  • Maybe Maz puts people who live in same area in touch with each other?

    Just an idea.

    All the best for next Tuesday, do let us know how it goes. Tinkerbell

  • Hi Tinkerbell

    I’ve seen the threads on Turmeric - do you take it with black pepper? How do you take it? I have got some but haven’t as yet worked out how best to take it, and how much.

    Thank you for your reply. It’s so comforting to know there are so many out there who can share their stories for us all.

    Gill x

  • Oops - I’ve just seen Pat’s reply about how to take turmeric! Many thanks Pat - Amazon here I come!

  • Hi Gill, was told on several occasions that the best way to take Turmeric is one which actually includes black pepper, so that is the one I take (Nu U~ or Pukka)...I am rather guiding myself how much to take, but the 600 mg seems good and certainly my platelets are staying the same, as opposed to rising rapidly. Turmeric is meant to be anti-inflammation, too (and many other things!), so seems a very sensible one to take. Nice to know that the lovely haematologist I have been seeing for 4 years seems quite happy for me to take the Turmeric, as long as platelets don't go over a thousand, she says. Really do wish you well and do keep in touch, Tinkerbell

  • Thanks Tinkerbell. I’ll have a look on Amazon and start spending!

    Gill x

  • Do keep in touch how you get on. Tx

  • Will do x

  • Hi Jacqui

    Thanks for the HRT info. I don’t think I could cope without it!!!

    We are about an hour from Ipswich so it would be ‘do-able’. I have so much to think about - everyone here has been so helpful and supportive. What a lovely bunch of people you all are!

    Gill x

  • Hi again Gill

    Same here, I'd go bananas without hrt or my hubby would haha!

    Hope you get a new hospital soon

    Keep in touch

    Jacqui x

  • Hi Gill. Poor you. You are getting really no help and advice from your hospital. The main things we need from our health team is reassurance and the most important thing....confidence in them. I can’t believe the medics you saw are so ill informed . Please get a referral to someone who knows what they are dealing with. Haematology is a big subject, for every heamo to know everything about it would be extraordinary .But when I was in my working life if someone asked me a question I did not know the answer to , I would say, well that’s a new one for me basically I don’t know BUT I will find out for you. My job was certainly not as important and necessary as the medical profession.

    Again it makes us so very grateful for this forum where we can talk to our fellow MPNers about all the concerns etc we have.

    I do so hope you find a Heamo that you can trust, and who can answer the questions you want answering.

    With very best wishes Sandy x

  • Thanks Sandy. I would definately be the same - if I don’t know the answer I would either find out or pass it on to someone who does know. Seems so easy! I could say a lot about some of the consultants I have seen throughout my life but I don’t think Maz would allow the language!!

    Thanks for your support. I already feel better today 😁

    Gill x

  • I opted out of the BMB being Jak 2+ is confirmation of the condition; doesn't hurt to have a baseline, my Doctor was OK either way. My Dr. told me today that many other Dr's seeing my sub-par iron levels would want to prescribe something to get my iron up and that would only make my condition worse. So you do need to be careful.

  • Goodness, there is so much to learn about this! Thanks for the advice. It strikes me the advice on here is more accurate than that given by many doctors.

    Gill x

  • Hi, I'm newly diagnosed ET, Jak2+ as well. I did research on the classification and I'm happy to send you the WHO guidelines where they actually changed it from 'benign / unknown' to 'malignant' (if you send me through your email address)

    Tamzin

  • Yes please, Tamzin. I can then show it to the doubting Drs (while wearing knuckledusters!)

    gillsmith70@btinternet.com

  • Emailed, let me know if it comes through ok

  • Yes, got it. Many thanks. There it is in black and white. Shame some of the doctors haven’t bothered to read it!

    Gill x

  • Since my wife was diagnosed with ET in Oct. '14 we have attended Addenbrooke's where the staff are very knowledgeable about MPNs. Although you don't always see the same Dr. the help and support is very good, specialist Sisters can be reached by 'phone and the nurses will supply a copy of the blood results when asked. Hope this helps.

  • Thanks martcar you are a great help. The phone contact sounds ideal - to have a knowledgeable voice at the other end makes things that much easier.

    Gill x

  • Hi,

    I’m in East Anglia too, however I have chosen to travel up to Guys in London to be under the care of Prof Harrison. It takes about 1.5 hrs each way, but worth it to be looked after by them !

  • Thanks for that rubyrubyruby. Where abouts in east anglia are you? I must say I am tempted to do the same but don’t know if I could put up with the travelling - from here (West Norfolk) it is at least one change on the train and any form of travel seems to wipe me out. Perhaps an initial consultation so at least I know I’m on their radar. Do you go up there often?

    Gill x

  • Hi all. I am so thankful for this support group. I am from Trinidad and Tobago in the Caribbean and was diagnosed with ET JAK2+ in June instant. My symptoms started since 2008 and I went undiagnosed until now. All that I have learned about this cancer is through this group. My heam never told me it was cancer. I did my own research and then was accepted in this group which truly enlightened me. I first thought it was a death sentence and became distraught but reading these posts have truly given me hope. We do not have any experts on MPN her in Trinidad but my heam does a good job of following up on my blood work. My platelet level is now 464 and I feel so much better. I am on hydroxy which is darkening my skin somewhat but I thing it is a small price to pay. I would like to try the tumeric but I will talk to my doctor first to see if I have to stay on the hydroxy while trying it. I have lots of body pains with the medication but I do feel better in my head. The dizziness has subsided a real deal. I have been dizzy for years.

    Thanks so much for the information from everyone. I live where we have lots os sunshine so I am constantly avoiding the sun. Good luck to all.

  • Hi Trinigirl

    It may be worth you putting all the above in a new post so more people would see it.

    You have obviously had a good read through the posts here, like I have. It’s so frightening to be diagnosed with an MPN and then to discover quite a few doctors don’t know much about it. I too am so glad I found MPN Voice as all the doubts and fears I have had so far have been allayed by the lovely people here.

    It’s great you are feeling so much better and it sounds like you are managing your life well. I’m only on aspirin and have just started taking curcumin in the hopes it will help as I get a lot of pains and fatigue/brain fog.

    All the best to you and keep posting!

    From what I remember, Trinidad and Tobago were spared from the hurricanes this year? I hope your beautiful islands are still beautiful.

    Gill x

  • Thanks Gill. Yes, we were speared tge hurricanes. I just love this group.

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