Feeling anxious and concerned. Been advised I have Thrombocytosis (ET). and although platelets have remained above normal level they're not too high.However, have felt extremely fatigued and have experienced very red hands and feet that sort of throb.
Recently saw the Clinical Nurse Specialist at Haemotology dept. who has liaised with Consultant and advised I need a bone marrow aspiration and trephine. Really stressed. Have seen my Gp and have been prescribed some diazepam to take before procedure.
Still totally daunted by prospect and freaking out. Don't know if I can do it.
Any advice would be greatly valued.
Many thanks. Xx
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Hello. I'm currently going through the diagnosis by elimination for ET (I. E ruling out secondary causes sequentially - all are point in direction of ET) I have my BMB on 7th Feb; clearly I'm not looking forward to it but I am keen to have it done to find out what is going on morphologically and to aid diagnosis (I've tested negative for JAK2). I also think that by having thus now it will be a good reference point for the future should my bloods change.
You will read mixed experiences of BMB - some have compared it to child birth and some have said it was fine just a bit uncomfortable. I asked my haematologist if the person was well versed in conducting the BMB as I have been led to believe that a physicians practiced, adept skill at doing BMB makes for a more pain free experience (which makes complete sense). I have been advised that the physician that will be carrying out the procedure on me does around 3 a day. Also the nurse at that department reassured me by saying that she has worked there 3 years and nearly all the patients that go there are pleasantly surprised by how much better it was than they expected. I also asked if I can take some paracetamol before the procedure as well as the LA and they said that was fine.
When is your BMB?
I'll post the experience of mine following the event - all in all I'm feeling relatively calm about it now.
Thanks soooo much for taking the time to respond. I really hope your BMB goes as well as can be expected. My date is Feb 12th. I wish it was possibly a little bit nearer, as the anxiety is pretty horrid. I thought I had things in perspective and agree with you that at least a difinitive diagnosis will be helpful and act as a comparison should things change.
Extremely fatigued and feel quite low, ( although I know there are people far, far worse off). Think I'm just ptretty annoyed that this illness has stepped into my life and disrupted it!!!
I like everyone have such a lot to do and feel indignant about it all.
I have a wonderful son and daughter and my daughter is expecting her first baby in early May. It's a little girl and I'm sooo keen to meet her and don't want this illness to limit my experiences.
So sorry, to go on. I am apparently 'triple negative'. Possibly I naively thought I was okay then and didn't have the condition.
All a bit confusing really!!
Hopefully, with a firm diagnosis things may be clearer. Although mymplatelets are too high I believe I am experiencing symptoms of ET, but still on just 75mg of asprin. I want to feel better and have better quality for life but unsure wether the bone marrow biopsy and trephine will mean a different treatment.
Not sure if you said you are having 'trephine' or not. They are doing both at the same time for me.
All the best,
Wishing you a comfortable procedure as possible. I will definitely think about you.
Hello Kerry, my heart really goes out to you as I can completely empathise. I spend sooo much time reading things and looking at the next steps. I don't want to seem arrogant questioning professionals but I'm acutely aware that this is so rare and then puts a natural element of doubt in my mind that their diagnosis and treatment plan is on the right track. No one has a greater vested interest in ourselves than us, so I'm glad I've been a bit obsessive about it so that I am informed and can ask the right questions. Long story aside, due to my persistence and understanding (although probably limited) I've managed to speed up this process by a good 6 months. I've been told that if all my other tests prove triple negative too then I'll still have ET.
I've not been prescribed aspirin yet. How long ago were you diagnosed and what are your platelet levels ? Why are they doing the BMB now?
It's brilliant news about your family and you should enjoy it and look forward (easier said than done) . So many people on here seem to be living a normal life and have adopted techniques to manage fatigue as best they can. This doesn't have to get the better of us based on what I've read; progression seems to be rare. Let's hope for good things from the BMB (limited fibrotic changes). Yes, I'm having the trephine as well.
Not at all - you should see my posts,. I've gone on and on and on!
I've put a fair bit of weight on of late(ironically because of the stress of this and the fatigue) so I'm going to really focus on getting healthier to limit thrombotic risks. Hopefully this will help fatigue too.
Is there a way of sending private messages on here - I'll happily let you know how this Thursday goes.
Oh thank you for your informative and supportive advice. It's very kind of you. I'm still trawling through on this site!! I like you need to know and feel informed. As you say too, it's hard sometimes putting your faith in others when it's not always a condition that known about by professionals. I like to feel in control and of course this is where the problem lies!! We're not really, (but by informing and helping others through and by our own experience I'm sure we'll be more confident dealing with this illness).
As well, we forget we are all individuals and experience things differently at times.
I had been feeling very low and unwell for past say 2 years with frequent skin infections/ abcesses/ cold sore virus etc.
no sooner had I recovered from one thing I seemed to pick up something else. I kept getting recalled re: blood tests from go, but nothing really seemed to happen. Then, finally got referred to Haemotology about a year ago. Wasn't really told much other than my platelets were a bit high and I needed to take 75 mg aspirin daily to thin my blood. I was constantly fatigued and lacking in energy. I had 3 monthly appointments and was told to just continue with aspirin. I didn't get a proper diagnosis ( apart from a leaflet - titled a Essential Thrombocythemia). It all came as a bit of a shock!!
My diagnosis on a letter to Gp says : Tgrombocytosis / mild leucocytosis.
I wasn't due to go back to hospital until June but have felt I am experiencing more symptoms. My hands are very red at times and feet and throb and the fatigue is so debilitating. I therefore rang to see if I could get earlier appointment. Advised Clinical Nurse Specialist of my symptoms and how I was feeling. I'm 55 yrs old and I don't think they always start you on further drugs until your 60 unless you need it.
This is why bone marrow biopsy / trephine was advised.
Really I just don't want this illness( like everyone). Unfortunately, don't think it's going away so have got to try and deal with it.
Nit quite sure of your age or how you came yo be involved with this illness but wish you well and I'm happy to keep in touch.
It's nice to fear supportive, kind words. It's made me feel less isolated and alone with it.
Hello, sorry for delay. I hope you found some calm for the rest of the day.
That's truly awful that they didn't discuss anything with you in much detail. I guess unless you're going through something like this you don't realise how frustrating and upsetting it is to be waiting around and feeling like you're kept in the dark. The frustrating part is that medical professionals have so much information in their minds and have already gone through stratification and the what ifs in their thoughts but this isn't necessarily shared unless you push. Perhaps they think too much information for patients is confusing. However, we are all different! I wonder what exactly your platelet levels are (weren't you told?) and your white blood cell count for that matter?
I read a post on here before which I thought was interesting and awfully sad. A lady had previously had breast cancer and now had an MPN diagnosis. She actually said the MPN process was more stressful due to the unknowns whilst she felt the breast cancer 'process' was a bit like a well oiled machine and it gave you faith in the system. Anyway, my very long winded point is that us rare group are certainly not alone in our feelings it would seem. The feelings of uncertainty and subsequent stress seems to be the norm in an unusual situation. I've decided that I'm going to continue to question, question and question; not because I don't believe that those in the healthcare system aren't doing their best, but sometimes, they just don't know enough about it (it would seem). Therefore, I have to look out for myself. I don't want to wait for something awful to happen and for them to then react - I want a proactive approach where my risks are reduced as much as humanly possible (something we all want no doubt).
I'm 39, went to my doctors for something completely unrelated and my elevated platelets were picked up by my fab GP. my WBC are also currently elevated. I've also been concerned as I've had a previous pulmonary embolism at age 18 and don't think this gets taken into account under risk stratification it would seem; hence my previous post concerns with potentially being diagnosed low risk and just having aspirin.
Try and enjoy your weekend.
Thank you for your messages today. Thank goodness for this site and its wonderful people.
No worries about time replying. Lovely to be able to interact and share experiences. To be honest I feel a bit of a fool not questioning more. However, I think I felt a bit overwhelmed with everything and nodded in the right place and wanted to flee! Now I'm determined to question and understand more. You're quite right to question, (especially given your history). You definitely need to reiterate this to the professionals as it's such an important piece of information.
I am interested to know what my platelets level was in the beginning. I suspect my platelet levels have remained relatively low , but consistently over the normal, hence having three monthly reviews.
It seems strange that people take such a long time to get a diagnosis of
their condition. I suppose it's the variables involved etc.
Hopefully our impendng BMB's will give us more clarity and a clearer picture of our condition and treatment options.
Decided to try and make myself feel a bit more human - so went and had my hair cut and coloured. Felt pretty exhausted but only had to sit there!!
You can send private messages by clicking on the double speech bubbles at the top of the screen, but please both of you post your experiences as its so helpful to others about to go through the same.
I just had my first bmb last week. I read about others experiences which are very mixed so I decided to play safe and take painkillers beforehand as I wasn't convinced local anaesthetic would be enough and I was right. Walking was extremely painful for the first 2 days and now 1 week on there is still some discomfort deep in the hip bone. Others say how painful it is all depends on how experienced the person doing it is. I think that's true, but you can't exactly walk in and ask are you any good at doing this. Hope it goes well for you both. I get my results at my next appointment on 25th, but I'm pretty certain it will confirm that my pv has progressed to mf. Not sure what happens next though.
Thanks very much for info re: sending private messages. Very kind of you to take the trouble with all that you have going on. It certainly makes you feel less isolated knowing that other people are having their own battles. So very sorry to hear you're still experiencing discomfort from your BMB. I'm still terrified despite knowing that everyone is an individual and experiences vary dependant on who is possibly performing the procedure.
I don't usually have the confidence to question too much, but you know what- I'm definitely asking how many BMB's the practitioner has performed!! If it's only one or two I might be re-booking if poss!!
I really hope your results explain things and that they are favourable for you. I wish you all the best and thanks for support.
Hi Kerry, it's no surprise that we forget to ask questions - it's alien territory for us. I had lots of down time waiting for my JAK2 and lots of time to read! I've been away for a few days but I'll send you a few journal links if you like that I personally found good - they are written by MPN consultants (I. E. Professor Claire Harrison)?
I liked your message about you hair yesterday - it made me laugh (in a nice way) as I did a very similar thing this week - I had my nails done, eyebrow wax, lash extensions (first time) and a blow dry at the hairdressers - all a sporadic occasion! I decided I needed to cheer myself up and it worked. I've let myself go a little bit lately with the worry. Enough is enough! I've got myself booked in for some highlights on Tuesday too before by BMB. Expensive, shallow means of distraction! It beats reading journals for a few days anyway! I'm at the point that I have to laugh about it!
Funny that you mentioned Professor Claire Harrison, (as I was looking at some you tube interviews with her too) on MPN's . Other people on this site hold her in very high esteem too. Think she's definitely the one who is at the forefront with new advances and treatments etc.
The links might be useful, but don't worry too much as you have a lot on your mind too.
Yep, I'm in the U.K. too. Glad you managed to fit some pampering in too. Sometimes it's just the distraction you need. I've felt pretty rough today and not really achieved much at all. Felt soooo tired and no energy. Did eventually get dressed but rested on setee most of the day!!
Hoping I'll be feeling brighter tomorrow. Hoping your week ahead isn't too stressful and that you feel prepared as you can for your BMB.
Sorry to hear that today hasn't been a good day. Hopefully tomorrow will be better for you. Despite the general fatigue, I think it is easy to further wear yourself out by thinking about all of this - I know I have on plenty of occasions.
Take care, be good to yourself. Our upcoming tests will help with a way forward.
I was diagnosed ET in 2007 after routine blood work as part of my annual physical. I was feeling fabulous and on HRT but my platelets were over a million. I saw a wonderful hematologist within a week and had BMB with trephine the next day. It all happened so fast I had little time to worry and the BMB was done with a local anastetic. It was a little uncomfortable but not painful. A week later I was diagnosed ET. I had to stop hormone replacement immediately which was when I felt symptoms, which I think were more menopause related. I started aspirin and when my platelets reached 1.5 million I started Hydroxyurea. ET became nothing more than an inconvenience in my life due to all the blood testing but I continued to live a very active life other than fatigue. Fast forward 12 years and Hydroxyurea stopped working. My hematologist had recently retired and her replacement was fresh out of school. He ordered another BMB. I had read so many people having painful experiences that I was nervous about my very young doctor performing the procedure. I again had local anaesthtic and the whole thing took less than 10 minutes. It was even better than the first time. I was shocked when they said it was all done! Yes, you have a sore hip for a few days and a deep but not bad ache that lasts about a week but I was golfing two days after the procedure. I know how frightening the whole diagnosis phase is but those of us with ET are lucky to have the best of the MPN’s to have and it may have little affect on your life. So try to stay positive and don’t be afraid of the BMB. I’m sure when it’s over you’ll wonder why you were so worried about it. Keep informed and ask questions but don’t let worry take over your life. Enjoy each day.
Thank you soooo much for the lovely post. You definitely spoke with experience, kindness and knowledge. Unfortunately at the moment worry seems to be all consuming!! Like you say though - perhaps ET is the best of the MPN's to have and you sound as if you have a very full life and the right mental attitude to deal with it. I need to get more perspective and try and be less pessimistic. I think because I'm sooo exhausted and fatigued that I just don't want to be 'stuck' like this.
If the BMB confirms ET I don't really know if they will start me on a treatment other than 75 mg aspirin as my platelets are 460. I just feel so low and tired that I wondered if I did start on one of the chemo treatments will I feel better?! Perhaps I'm naive in my thinking, but just want to feel more human and have my life back.
Sorry to sound a bit pathetic, just feeling frustrated and sad about things.
Generally, I'm quite a fun person just exhausted.
Thank you once again for taking the time to respind and for your very reassuring comments re:BMB. Most helpful.
Thanks for sharing those encouraging words. It makes me feel even better about my BMB Thursday. It's wonderful to hear that you haven't let this get the better of you. My new focus is on trying to get myself as healthy as possible and to stop feeling a bit sorry for myself. What a journey though! You are so right - things could be a lot worse. I am thankful.
Thanks again (sorry for butting in on the conversation! )
Just thought I'd send you a quick message to wish you well with your BMB tomorrow. Hopefully, you're not too stressed out with it all and it will be a quick, pain free procedure.
Lie if necessary to me ( ha ha) as I'm already getting worked up. Wish mine was sooner now.
Anyway you're in my thoughts and I hope it goes well.
Thank you so much - that's means an awful lot to me and it's incredibly thoughtful!
I've just had a bath to relax and I'm telling myself it will be fine tomorrow (I do 90% believe that now). I just want to to know where I stand. Its a long wait for all the results. I've been giving myself a break from reading and trying to go with the flow a bit more.
I'm really pleased you've had some lovely replies - they sound encouraging. For one that's not in to social media in any format, I've really found this site a fantastic source of support; I'd be a lot more lost without it!
My BMB is at 9 am tomorrow - I'm not going to drive there - it's about a 60 mile round trip. I've got a good friend coming with me for support on the train.
I'll let you know how it goes - I'm sure there will be no need to lie (ha, ha). Easier said than done, but try and focus on something else if you can - the waiting can drive you around the bend. Think, all the worry for a procedure that will be over in a very short amount of time. I'm sure your child birth was much worse!
How are you feeling at the moment anyhow? I've been thinking about you.
Glad you've managed to relax and really hope it goes well. At least it's over early in the day xxx Mine's at 2pm!! My poor son is taking me. (Bless him) xx He'll be glad it's over too I'm sure, as I'll be very anxious and probably mightily annoying lol!!
Still feeling pretty exhausted to be honest and forced myself to wash my hair and get dressed even though it seemed a massive effort.
Definitely trying to keep positive and not to read too much, as it can become obsessive!! I keep,thinking I might find the answer!!
Anyway - Wishing you well with your procedure. Enjoy your train journey xx
So, my BMB is all done! Honestly, honestly, honestly (not fabricating the truth in the slightest) it was fine for me and really not as bad as you may think at all. I'll give you a run down:
Procedure 17 mins in total, from gloves on to gloves off. This time includes the prep of the skin, local anaesthesia, the aspiration and trephine.
For me the only slight painful part was the LA which is slightly more painful than going to dentist but more than bearable (I think I had 4/5 LA injections but they are done quickly). The next parts are not painful as the LA kicks in and of course there are no nerves in your bone anyway (only the periosteum - basically connective tissue around bone). I can understand why some people may feel unnerved by it BUT there is a differential between sensation and pain. You can feel that something is being done but it was NOT painful for me. The Dr said this is the hard thing for some patients to differentiate between especially when nervous.
All in all it was fine. In fact, I had a lovely view of the sea from my bed whilst it was bring done and the lovely nurse brought me and my friend a cup of tea when it finished. If I ever had to have one done in the future I would even let a junior doctor perform one now to aid them with their training - that's how fine I am with it.
Not sure how much I'll ache once the LA has worn off but I'll keep you posted.
I really hope this helps you feel more at ease - that was my intention with this message and I have most definitely given you an honest account.
Thanks sooooo much for your honest, informed update. Sounds as if you did splendidly!! Well done you xx
Hoping that I can have a similar experience. I shall definitely try to remember your words and try not yo catastrophise!!
Glad you had a lovely cuppa afterwards with your friend XX
THE STAFF sounded lovely and caring. It always makes such a difference the way procedures are approached.
Glad it's behind you now xx Hoping you aren't too uncomfortable when the local amaesthetic wears off. Hoping the results are helpful for you and your mind is reassured.
Thanks very much for share no your experience. Really hoping mine can be as positive an experience.
Thank you, Kerry. I really hope your experience is equally as good - I'm sure it will be. I will send you a message beforehand to wish you well. It's just the wait for the results now 😔
If you want to send me a private message beforehand please feel free. I really don't mind; anytime. I understand about needing to talk about it. I'd also be happy for you to ring/skype also if that helps in any way.
I will keep you posted on after effects. Day on sofa now watching movies.
You take good care and enjoy your movies! Xx I'm not the most technical person and although someone kindly mentioned that you can use the 'chat bubbles' to talk - I'm not quite sure how!!
I did tap icon but I don't think I have the facility to message back, as the icon message button didn't do anything on my I pad!!
I'm sure I clicked the link for verification of my e mail - but no joy!!
I think people like to see each other's supportive messages but am willing to possibly direct message if I can sort out how.
Today very tired again and every time I do anything I seem to tremble with fatigue!! It's sooooo annoying!
Sorry to hear that you’re stressed about your forthcoming bmb. I have never had one, but I would feel anxious too. The positive about this is you will have an accurate diagnosis, and a baseline for future measurement.
It sounds like you’re quite symptomatic with platelets at just 460, evidently it’s not all about ‘numbers.’ What you describe with your hands and feet sounds like Erythromelalgia.
It’s important that you have a good quality of life, and it may well be that your Consultant might discuss cytoreductive therapy with you, even though you’re not 60 yet. I have ET and my platelets were only 500 at diagnosis. I’m on hydrea as deemed ‘high risk’ just because of age. It suits me well, I have no side effects and it keeps my platelets within range. If you have to commence treatment I would ask about Pegasys. MPN experts now believe it may actually slow progression of the disease.
Good luck with the bmb, it will be over before you know it. Divert your attention by thinking of the imminent birth of your Granddaughter. Keep busy until then.
Only just spotted your post! Thank you so very much for the your insight and kind words. Feeling particularly fed up with myself today, and you've cheered me - knowing that there is something to give me hope with regards possible treatment. I think because my platelets aren't that high, somehow I feel guilty for complaining. But, as you said I think my symptoms are definitely making me feel ill. I still am really fearful of procedure but don't really have an alternative if I want some answers and some help or treatment to feel better, as recently I feel that my quality of life is very compromised. I really appreciate you taking time to respond and hope that you are mamahingbyourbillness well and have lots f very good days.
The thought of my meeting my baby grabdaugher, ( due early May) is what's keeping me going.
I’ve just read through your previous posts and realise that you have had some major changes in your life recently, including this diagnosis; so it’s understandable that you’re feeling a ‘bit fed up.’ Who wouldn’t be? I think once you get the bmb out the way and the follow up Consultation you will feel less anxious. Fear of fear can be all consuming.
You say you feel guilty for ‘complaining,’ you are certainly not ‘complaining,’ you are sharing, and that’s how we all learn from each other on this forum.
As for MPN symptoms, nothing surprises me anymore. I’ve read about people with high counts who are asymptomatic and people like yourself with low counts and troublesome symptoms!
I hope all goes well on the 12th and hope you have some form of support. Keep us updated.
I was diagnosed after an eye bleed... just went blind overnight in right eye... but I believe is had this much much longer.... I started on clopidogrel and hydroxycarbamide but it stopped working now I'm on interferon... it's brilliant.... I was getting awful symptoms.... still get very hot feet especially at night.. also night sweats.... but not as bad.... blood counts now at 420 ish.... better at under 400 for me. Hope you get the answers you need. I was jak2+ so didn't need bmb....... take care of you xxx
Thank you very much for sharing your story. So sorry that you lost your sight in your eye. I didn't realise just how much these illnesses can impact in such different ways and how each person's journey is so varied. Some people's experience sound as if ET hardly impacts on their life at all and others it has a massive effect.
Thanks for your kindness and support. Hope you're doing okay too.
Thanks so much for your reassurance and supportive words. I think initially everything seems overwhelming and quite frightening. I am finding my way through lots of information and trying to understand where my illness and symptoms fit.
I think you're definitely right to say I will feel less anxious once the BMB has been done and I get a firm diagnosis and possible treatment plan.
This site has been invaluable and people have been so kind.
I'm trying to remain positive but it's hard when waves of anxiety come crashing down and I lose perspective.
I have a very small, close family who are very supportive. But I try not to really say too much as I know they're finding it difficult too.
I hope you are coping well too, and thank you again for your response.
Hi. I was a bit concerned but I'm usually ok with medical procedures. The nurses were lovely and I only winced once. You are given a local anaesthetic and gas and air at my hospital. Think some people maybe had a worse time and given the procedure a bad name. The diazepan will help as well. You'll be okay.
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