Greetings from Canterbury

Greetings from Canterbury

Hi only just found this forum, I have had et for 16 years was fine for the first ten on hydrea and aspirin but then blood changed and got quite anaemic, doc put me on anagrelide then interferon, these treatments did not agree with me at all and now I am back on hydrea and still not right. Feel very alone and a bit worried as I have kids etc, I just think I need to speak to others with similar problems. Is there any long term et people here?? Tia

Nick

31 Replies

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  • Hi Nick, I would just like to welcome you to the forum. I do have ET, but I'm not a long term sufferer - so I hope someone else can answer your question. I can understand your worries and maybe you should ask your GP for a referal to an MPN Specialist?

    Now you have joined our 'special club' you will not feel so alone in your fight. We are a friendly and helpful bunch of people.

    Wishing you well.

    Mary x

  • Thanks for the reply Mary I am currently in Canterbury heam but last year I was sent to Dr Harrison at guys and she has sent me to get my heart checked out which I am currently having tests for, all because I had a cardiac arrest having a hernia done and she want to run my blood a bit higher around 600 as she said my normal doctor was always trying to get it around 300 and that was contributing to my anaemia, not sure myself but she seems to know her stuff...

    Thanks again

    Nick

  • Hi. Glad you have found this site. It's a great place for friendly support and advice. If you've seen Claire Harrison, you've probably seen the best in the country! Once you have seen her your haematologist can always refer you back or just ask her questions if necessary. Mine is waiting for a response right now about me. I have had ET for nearly 23 years and I'm in the unfortunate 5% who progressed to MF but that in no way means that you will too! Ask as many questions as you need to here as there is usually someone who can help with an answer

    Best wishes, Jan

  • Thanks for the reply to be honest I have been worrying about it progressing to mf, what signs did you have that it had changed to mf or did it just happen?, yes Claire Harrison was very nice and she seemed more up to date with everything regarding mpn's, have your meds been changed at all after having mf?, site seems great so far I have spoke to more people with the same illness in the last 24hours than I have in the last 18 years...

    Thanks

    Nick

  • Yes, I am now on Ruxoloitinib. Not worth worrying about progression as I've heard somewhere that worrying about things is about as useful as chewing gum! The chances of it progressing are small and there are so many who never progress. I moved and my new haematologist noticed changes in the blood results over time that prompted her to investigate. (A good idea to keep track of your results yourself). I'm glad you have spoken to more people here but each individual journey with MPN is so different that you have to be careful not to worry about what is happening to others being your fate too.

    Best wishes, Jan

  • Wow you are so lucky to have Claire Harrison for your doctor. She is a top MPN specialist. You are in good hands with her. I am in South Africa we don't have any doctors that specialise in our disease. I am under a hematologist and he just quotes from a book. I haven't even had a bone marrow biopsy. I asked him on my last visit and I said it was world Health Organisation stipulation. He told me to see another doctor if I wasn't happy. You have to find out as much as you can about this disease and be your own health advocate . I am learning so much through a group on FB.

  • Hi laprice

    I am in South Africa too. Where in SA are you? I have ET jak2+ and go to Mary Potter oncology centre. Also did not have a bone marrow biopsy, not deemed necessary when jak2+.

  • Hi Yvettenaude

    How lovely to meet someone from SA.

    I'm in Durban and I have been going to Capital Heamatology Hospital. The WHO criteria is a bmb for ET

    the jak2 gene and high platelets could also be masked PV or MF as both these two other blood diseases are jak 2 positive. The only way to find that out is through a bmb.

    The doctor can also see if there is any fibrosis in the marrow and also how fast or slow you are progressing when you have a 2nd one in the future.

    My doctor hardly says 2 words to me after seeing him every 3 months for 4 years. I have had to learn all about this disease on my own and it worries me that he doesn't think I need a bmb.

    How is your hem? Do you have confidence in your doctor.

  • Hi laprice

    I am in Pretoria. My experience is the same as yours. Also had to learn about ET/MPNs on my own. I'm seeing an oncologist, he is trying but I am by far better informed, he is not an MPN specialist. There is a hem at the centre I go to, spoke only briefly with him once, he just said ET is not that bad....

    I am allergic to Hydrea and the oncologist is now motivating to medical aid that I try interferon. However, pegasys is not available in SA, only old school interferon to be injected almost daily. Not really keen on that. But then I do want to feel better, tired of this darn fatigue soreness leg and bone pain. What are you on? How long have you had ET?

  • I wish she was my regular doctor as I have only seen her the once but at least my regular doc is Ok, it must be frustrating for you being told to go elsewhere when you were only asking questions, how did you get diagnosed with your mpn seeing that they don't know as much there??

  • I had constant leg pain and burning sensation under my feet. I was seeing a GP and told him how tired I felt, he did blood tests and picked up that I had high platelets. He told me to drink lots of water and take aspirin. Anyway aspirin gave me stomach ulcers and I ended up changing doctors. The new doctor sent me to a hematologist and he told me I had ET. Put me on HU and gave me a pamphlet. It isn't easy to find another doctor. I flew to Cape town last year to see a Professor who was supposed to be a specialist in hematology and he said in 4 years time I will have MF, I was shocked as all he did was a blood count. Funny enough it turns out my hematologist trained under this professor.

  • What is the Prof in cape town's name? Pity we can't go see Prof Harrison in London. You may email me if you like.

  • I can't remember his name it was at the UCT hospital professor Drofosky or something simalar.

    I wish I knew I had ET when I was in London years ago and then I could have seen a specialist also. Sigh. 😧 people say it's always good to see one at least once. It's nice to know someone here though. I was beginning to think everyone with ET was in England and America. 😀 I would love to chat more. My number for what's app 0825337472.

  • Welcome to the forum Nick. Sorry to hear you are having so many problems. I was only diagnosed 4 years ago, though like many others I believe I had ET for a long time before diagnosis. I am on hydroxy and though I tolerate it reasonably well, I do have side effects such as fatigue, bone pain, dizziness, night sweats etc, though I am unsure whether these are caused by hydroxy or ET. I am also a bit anaemic. The people on here are fantastic and will always offer support and share their experiences. I hope you can find some comfort here.

    Karen

  • Thanks for replying karen, I forgot about the night sweats and dizziness, it's amazing how much we get used to over the years, my wife has to change the bedsheets every night alot of the time I think she is just used to it now. How do you deal with your anemia like do you take any supplements or diet change etc??, I will agree it is hard to distinguish from et symptoms and side effects of all the meds but sweating and bone ache seems to be there no matter what drug I have been on and I seem to have tried most now lol, Dr Harrison did say that if my blood did not stay ok I may be going on trial drugs?? But not sure what.... It's so good to talk to people in the same boat as me,thanks for taking time to reply...

    Nick

  • The anaemia is not severe so I just try to eat healthily with lots of fruit and veg, particularly green leafy veg. Good luck with the trial if they decide that is the way to go. Let us know how you get on.

    Karen

  • Hi Nick , aww see you are in Kent ! im in Sittingbourne , attend heamatology in Medway, I aslso have ET 4 years now im on Hydrea and Asprin, do not have many days when i feel great i must say, i get very fatigue , tummy discomfort , and upsets headaches ,i know ifeel alone at times , but being on thisforum is a great help , because although my consultant is good , i find they do not know alot about side effects whether its from mpn or treatment we are on, so i find out more from others like me on here so i do not feel so anxious all the time ,when a strange side affects occur . but im sure i have had mpn more than 4 years and this only came to light on routine blood test from gp 16 years is a long time ,and i know a feww on here have been that long so may help you bit more hope so regards Holly

  • Hi holly i agree my old heam was not very interested in my side effects for a long time I thought they were all in my head and just got on with life, but now hearing how everyone seems to suffer from at least a few side effects that are all the same it makes me feel a bit at ease if that's the right word...

    Again I agree I think I had this a while before I was diagnosed like yourself, I think my count was over 2.5 million at first only a chance blood test for unusual headaches spotted it, thinking about it I was twenty five when diagnosed and am forty three now so it's 18 years I have had this not 16 my mistake.

    One other side effect that is very recent is my skin on my face now has very dark patchs on my forehead and my cheeks and ears, I am mixed race anyhow but it's quite noticeable now,not sure if others have had this problem or not..

    Thanks again for replying

    Nick

  • Hi nick I have ET jak2 positive I've only had it a year and I'm on aspirin and Hrdrea every day MPN has been a life saver for me don't always post but look at posts and get a lot from others with the same thing. Hopefully there's someone can help .

  • Hello Nick,

    So sorry you have been feeling alone - it's a beastly condition whatever MPN you have but knowledge helps and when you hear how we all have similar symptoms that helps even more.

    I have MF followed on from PV two years or so ago and you know it's really manageable. I take Ruxolitinib and it works for me in a great way but I still get very tired which is a wretched nuisance. I do have anaemia and when really severe have had transfusions of iron - seem to be on a good patch at the moment so when I go to Prof Harrisons clinic on Monday I hope for steady news. You really have seen the best of the best when seeing the Prof. by the way. Hope all your heart monitoring goes OK and keep in touch.

    Wishing you all the very best and you are not alone remember.

    Linda x

  • Thanks linda I would love to have my regular clinic with the prof but I am too far away now, I lived most my life in London I was diagnosed and had my bmb at Greenwich hospital which is no longer there, then I moved to Woolwich common Queen Elizabeth I think it was and then moved here and only found out about prof Harrison fairly recently, it's made me feel a bit better hearing everything said already really glad I joined and I will Def be staying on the forum, you sound like you have been through quite a bit yourself esp having to have transfusions and I thought I was anaemic, thanks again

    Take it easy

    Nick

  • Hi Nick, welcome to our forum, as you can see we are a friendly and supportive bunch of people. You have mentioned dark patches on your face etc, one of the listed very rare side effects of Hydroxycarbamide, affecting one person in 10,000 is skin discolouration, so it's possible this is what is causing it, speak to Prof Harrison next time you see her. Have you also seen our website mpnvoice.org.uk, we have lots of very useful information on there, including videos of people talking about their MPN, how they cope with it etc, and haematologists talking about the different MPNs, medications etc, and lots of real stories from people with MPNs which are very inspiring to read. I myself have ET, I was diagnosed in 2003 and am on Hydroxycarbamide which seems, at the moment, to be working very well.

    If you would like to have a buddy to talk to then email me at maz.cd@mpnvoice.org.uk, a buddy is someone who has the same MPN as you and takes the same medication so can give you help and support from the perspective of someone who really does understand how you are feeling. Best wishes, Maz

  • Hi, I told my heamotogist on my last visit about it and she said to stay out the sun and use sun cream if I do go out not much else though,I only saw Dr Harrison once but she said I can be referred again no problem, I will take a look at the website and buddy thing as it all sounds good to me, thanks for all the info

    Nick

  • Hi Nick-- I thought I'd jump in---I've got ET, I'm not a long time person with it--I am on hydroxy same as you, and aspirin and I've been diagnosed 2 years. I am in Canada - I just wanted to reiterate what someone else said - Dr Harrison is the best --if I was in the UK I'd be trying to see her. I found this web site very supportive. All good wishes.

  • Hi, jump right in no prob,I found Dr Harrison very good I wish it was a bit closer but I don't like going to London anymore so It was only once I got to see her, she has world wide recognition it seems so even more happy I got to see her, I'm still going through tests she called for so no doubt it will not be the last time but unless something is really wrong I will have to stick with my local hospital.... Thanks

    Nick

  • Hi Nick I have had ET for nearly 5 years also on HU and jak2 positive. For the first 6 months I felt so depressed and thought this was the end. I found a fabulous closed group on facebook called Essential Thrombocythemia closed group they have about 2000 members. I can't believe how many young people are on the group and how many people have had this disease for 20 years plus. They have so much knowledge and have been such a great help to me. Maybe you can look them up.

  • Hi, I don't normally do Facebook but I will have a look just for the info and to speak to some long term people, thanks for the info

  • Hi Nick, I'm also relatively new to ET, just a few years, but a few weeks (or months) ago people posted on this forum how long they'd had it and some had had ET for at least 20-30 years without too many problems. Add these people to those laprice01 mentioned from Facebook and you have quite a few. So there's every reason to be optimistic & confident. At 65 I think I'm apt to die from something else before this stuff gets me. Take care, Katie

  • Hello Nick

    I live in Sittingbourne and go to Kent & Canterbury. I have ET, diagnosed 7 years ago. I was first seen at Ashford and I can perhaps guess who you saw in Canterbury. He was the head of Haemotology but he was not really interested in MPNs. I moved to Canterbury when they stopped the clinic at Ashford and have been seeing a wonderful doctor there but he has retired. Now I don't know who I will see. I take HU and clopidogrel at present but this may change as it seems to become inefective after a few years and I go on to Anagralide. This lasts for about 18 months and then I have to go back as the Anagralide lowers all my blood cells. I find the fatigue and joint pain the worst effect and sometimes I just wish I could have one week without being unwell.

    Good luck

    Sally

  • Hi I live in the area too. I was seeing a Haem at the Kent & Canterbury who referred me to Guy's, as he explained that he didn't know enough about MPN's. He wasn't very helpful. Prof Harrison is an expert and I am much happier to be under the care of Guy's. I go to London every 6 weeks and find having the specialist nurse available on the phone when things change for the worse to be really helpful.

    I was diagnosed with CalR ET in March 2016 after suspected TIA. I was on Hydroxy but am poorly tolerant (extreme fatigue, ulcers etc as well as normal side effects) and was very unwell. After a bone marrow biopsy I was put on pegylated interferon alpha injections (November) but this treatment is not managing my platelets very well and the side effects are quite severe. I'm 48 bringing up 3 kids so want to stay as well as possible for as long as possible. I think Guy's is helping me to do that. I have found that exercising at the gym and swimming 5 days per week is very good for my energy levels, without this I am in bed 3-4 days out of 7 (I've just got an exercise referral). Everybody is different, so I think having specialist care is essential. I feel really lucky to have access to the care at Guys. For me the financial aspect of having an MPN is the worst and Guys have helped me to find help for that too.

    Guy's cardiothoracic dept also repeated a bubble test that was done at Margate and found a problem with a minor valve. I will find out next week if I need a stent, but I don't think it will lead to that. The heart specialist at Margate Dr Grosser is fantastic and found things on the MRI scan that Canterbury missed. I think stress levels have a lot to do with managing symptoms. The Senior Specialist Occupational Therapist at Guy's Cancer services, Rosemary, has been brilliant in helping me find ways to manage my symptoms. The wonderful thing about this forum is it helps you realise that you're not alone. I hope you find my comments helpful and wish you luck for the future.

  • Hi I found your comments very helpful it makes me consider going to guys full-time for my treatment, I never got to the pegulated form of interferon I could not even handle the side effects from the normal interferon it was a nightmare, the depression alone made me want to not go on anymore.

    I find Canterbury ok just nit really up on all the latest information and problems that people have with mpn's, thanks again

    Nick

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