I was diagnosed with ET early last year. It was picked up on a pre op blood test. I have been on a steep learning curve since the diagnosis. As a naïve patient on my first Heamotology appointment with a supposed Heamotology specialist, without even making eye contact with me, the doctor tossed a book at me and said “ you have et, we can treat it, read about it here.
Generally speaking my experiences with doctors and haematologist s have been confusing at best. I contracted sepsis , and in the hospital none of the doctors knew about et, and getting to see a haematologist was nigh on impossible.
post sepsis December) I have been struggling with extreme fatigue which I expected , however I began experiencing new forms of fatigue before sepsis, not long after beginning the hydroxy. An example of this would be I would be walking somewhere and a feeling so powerful came over me and I would have stop. My thoughts became confused, and I would struggle to think clearly and get words out. These episodes would last for anywhere between 10 and 20 mins, and although I could get my thoughts together again, my energy levels remained low for the remainder of the day.
I get these episodes regulars now, and it affects my daily functioning. Although I am 66 and retired I try and keep active, but the symptoms are getting worse. I also get muscle ache in my legs, and my hair is thinning out.
I saw my gp yesterday who is a good doctor, but knows little of et, and has sent me for full bloods.
I am seeing the haematologist soon, but am left wondering how much they actually know of the disease, hydroxy, and other treatment s,
Any comments appreciated
Gary
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Bantams123
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hi Gary I was diagnosed with ET last august I to had a book to read and had a bmb to confirm I’m on hydroxycabamide and it’s just been increased as my numbers went up. I’m also tired all the time even more now bring on higher dose they don’t really tell you much you just get on with it I suppose
I suppose everyone has a different experience and reaction to the condition/ meditation. I find it frustrating that we are given the standard reply “ get on with it”, by people who are not that experienced with the disease and are therefore devoid of giving us alternatives. My own experience of tiredness is personally debilitating, and I can’t accept that I should be dismissed as if I don’t matter. I want to work with the medical professionals to find an answer but that is proving difficult. Thanks for your reply and I wish you all the best.
hello Gary, sorry to hear that your experience with your haematologist hasn't been so far a good one. Have you met or been given the details for the haematology nurse specialists in the department, they are a good source of information and can advise you on all things to do with your ET, so it is worth speaking with them.
With regards to the fatigue, it is awful when it hits you, and can be caused by ET and Hydroxycarbamide. We have some information on our website about managing fatigue which might help you mpnvoice.org.uk/living-with...
Hello and welcome to the club no one wanted to join but everyone is glad to be a part of. This i a great place to be to get support an information from a patient perspective.
MPNs are rare disorders, Most physicians know little about them. Many hematologists have very little experience with MPNs as well. It is important to consult with a MPN Specialist to ensure optimal care. Here is a list of patient recommended MPN expert docs. mpnforum.com/list-hem./
Fatigue is the most common MPN constitutional symptom but it can occur for other reasons too. A serious illness like sepsis would certainly be one cause. It is also worth noting that fatigue (asthenia) and breathlessness (dyspnea) are common hydroxycarbamide adverse effects. Sometimes the timing of the fatigue is the only clue as to which is which. Thi is something that it is best to sort out with a MPN specialist who understands ET and the medications used to treat it.
Getting a full evaluation of various labs would be a very good idea. Hopefully, this also included key nutrients like iron and Vit B/folate.
I have ET and have been on hydroxy for over 25 years , lived pretty normal apart always catching everything , my diagnosis was almost pre internet and I had to buy my own haematology text book , I'm sorry to hear you had such an unhelpful experience , and things haven't changed much with drs , seems to come from ET just being rare and even most haematologist s don't know much. Anyhow this site and the blood cancer charity are a great resource now
I was according to drs a perfect patient for 20 years, very stable blood count , but started to suffer from debilitating fatigue, for a long time I got shrugs and "it's just part of ET " but since I was so miserable and was aware hydroxy can also cause fatigue, it was eventually agreed I could try reducing hydroxy ( this can only be done slowly apparently) . Drs were loathed to risk disturbing my " perfect numbers" but I got improvement , so we persisted . I now only have some manageable fatigue and my platelets run at top end of normal instead of the middle.
So that is something to consider , advocate for yourself and remind drs you are a whole person, not just one disease , or a test result
Hi Gary, I hope your doctor did a more complete blood test on you? The symptoms you describe could also possibly be related to vitamin deficiencies such as B12 , vit D and folate, (or it could be your ET treatment. )
I would suggest you always ask for a printed copy of any blood test you have and keep these. Then you can see what is going up and what is going down. If your vit levels haven’t been checked, ask your gp to do them ( vit D, B12, Folate, thyroid, ferritin) it would help to rule these out because if these are low you can easily fix the issue.
MCV levels help to show if your iron is low or if your B12 is low.
I have also personally found that both gps and haematologist don’t know much about ET and even less about vitamins. With vits being “in range” does not mean your vit levels are optimal for good health.
it is helpful to learn more about blood tests and what they mean . I basically had to do all my own research to restore my health. If I’d waited for the doctors to do something, I’d be really unwell. For example, before diagnosis my fatigue had got so bad, I did not feel safe to drive and I was thinking I would have to stop, which would have also affected my job. Fatigue all went with correcting my B12 levels . The GP and haem did not consider me to be deficient as I was 5 points above the lower range, so would not treat me - but the range is huge and we are all individual. I had to treat myself.
I have ET with platelets typically around 1400/1500. I just take ½ aspirin every ⅓rd day. Haem wanted me to take take HU but I declined because from doing my own research, the side effects, even just one, would be way worse than the disease , for me anyway. I did manage to see an MPN specialist to confirm this , but I was disappointed that her vit. knowledge was also lacking .
Good luck with getting to the route of your issues.
was going to say exactly the same, your extreme fatigue sounds more like a B12 issue as opposed to just being a side effect of an ET. It should and can be treated and makes all the difference! My haemotologists don't check my folate or B12, but when I feel fatigue in the way you are my GP's will happily request a blood count to check my level, which are often low. I would strongly advise speaking to your GP about B12, the NHS website has some good information about B12. Leukemia care has an amazing you tube video and booklet called 'coping with fatigue', I found this really useful with some good practical tips. I hope you find something that helps x
thank you , I am waiting for b12 results to come back, but have now been put on iron tablets and high dose Vit d tablets. Am waiting to speak to GP about thyroid level being low
Hello. I feel your pain. I was have ET jak2. I attended the haematologist department to be told to read a book that was passed to me then come back in 2 weeks to sign consent for the treatment, when I got in the car I tossed the book on the passenger seat to see the words BLOOD CANCER on the book at no point did the haematologist tell me that ET was a cancer.
I suffer from chronic fatigue and when I inform the haematologist he just say he can’t understand why I would be feeling this way. I asked him if fatigue was part of the illness he said were would you get that idea, to which I answered the book YOU gave me !!!.
I no longer see the haematologist and have been seen by a nurse who’s knowledge does seem any better ( I attend Huddersfield Royal )
I was admitted to hospital in Sep 2022 for appendicitis and the surgeon referred to me as “ your the person with the funny blood thing “
I don’t feel like any of the medical staff I have seen have any knowledge of the condition. The only person who inspires me with confidence is the pharmacy who was very informative and knowledgeable about the Hydroxycarbamide that I am prescribed
you definitely should have contacted an MPN specialist by now. Haemotology are not experts & my GP has never seen me as knows nothing about ET I get bloods done by nurse & that’s the limit of my surgery input 🙈. I contacted Professor Harrison at Guys London the expert here on MPN that is who you need to talk with . The contact details for MPN are on this website 👍 Julia uk
Wow - so sorry to hear about your experience. Doctors are only human and like most of us cannot be expected to be expert in all things but they can definitely work on their patient care and bedside manners! You are lucky enough to live in a country with some great MPN specialists. Seek one out asap - if your hematologist doesn't give you a referral (although they should as most good doctors readily welcome a second or even third opinion) then ask your GP and reach out to the Patient Advocate. Our diseases are too rare and too heterogenous not to be treated by an MPN specialist. Good luck.
I’ve known about ET since diagnosed March 2022. Complete surprise. My experience with first drug Hydroxyurea was not good. Same for second drug anagrelide which had milder side effects but introduced new serious cardio effects. Hematologist then prescribed peginterferon injections that have had nominal effects and is now slowly reducing platelets. My quality of life is back. The drugs are also in order of cost, low to high. Points are 1) reactions to drugs happen, some get it worse than others but there are multiple drug options, 2) must have knowledgeable ET doctor involved, get comprehensive blood tests and bone marrow biopsy to track your status and get timely alerts of changes like liver enzymes, iron levels, potassium levels, etc., 3) don’t let insurance / cost dictate treatment - hydroxy is cheapest and works well for some, it’s a first choice treatment in the US but it’s a chemo drug with overwhelming side effects for some , 4) yes ET is technically a blood cancer but it can be controlled, and 5) drink lots of water no matter what drug you take. There are excellent MPN doctors in the UK. Please reach out to get one on your support team ASAP. Good luck to you and stay safe!
Very happy for you, Julia! Thank you very much for sharing very good news indeed. Praying you get long-term relief from peginterferon as I expect to do, also, in the US.
Hi Bantam, Maz has already responded to your post and is one of the moderators on this site who will give you all sorts of information if you ask. You will see the name above at the right-hand-side.
I wanted to respond to you as I was told of my ET in exactly the same way as you. I was diagnosed two years ago and the haematologist said you have ET and read this book. I asked if it was a cancer and she said yes. I was 79 years old and very upset to be told in this manner and left the clinic in tears. Not even a nurse showed any comfort or help and I was lucky to have my daughter with me.
I have found that the haematologists I have attended are not really very helpful and my Macmillan nurse is great when I can contact her as she is so busy.
On the site here I was advised by many to get an MPN specialist and I could not find one in Northern Ireland so I emailed Prof. Harrison in Guys. She responded straight away and put me in touch with my local MPN specialist - Professor Mary Frances McMullin who is a world renowned authority and an extremely lovely person who immediately made an appointment for me and took time to answer all my questions and worries and I always feel better after seeing her. Someone answered you here and tried to make excuses for the way you have been treated by the doctor. There is no excuse. It is basic humanity to at least meet your eyes and show sympathy and consideration and make sure you do not leave the clinic really upset - not knowing what to make of it.
Do not delay in getting proper advice and of course the site here is invaluable for answering all the niggles which come along. I too am on hydroxycarbamide and although I have extreme fatigue as a side effect I must say it has worked very well and quickly at sorting out my blood levels. Because of this I put up with the fatigue and I suppose have got used to it. Who knows I might have worse side effects on one of the other treatments available. As someone else told you in the replies it is important to drink plenty of water - this does really help.
I wish you well in your onward path and hope you get sorted ASAP.
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