Pleased to find this group. I am 59 diagnosed with ET for around two years following a bone marrow aspiration test. Live in Germany my thrombocytes are 940. Currently on Aspirin.
Haemotogist is aiming for me to start on hydroxyurea in the next six months. A little anxious about it’s effects. Otherwise l am fairly
healthy. I try to stay positive. Receive a good service here including psychotherapy which helps
Looking to hear peoples experiences - things to look out for developments etc
And it’s great to not feel alone!
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Dovme
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Hello and welcome! I'm 36, mother of 3, live in Georgia and triple negative ET.. This is a great group of very positive, informative people! I'm only on aspirin so I'm not any help as far as meds go, but I wish you lots of luck!
Hi, I have ET and in the beginning my platelets were 970 but with a lot of de-stressing managed to lower platelets to 600. That was 5 years ago. My platelets are pretty stable in the low 700s. I do take aspirin to help prevent clotting!! I have read there is better drugs than HU! I am 68 and still researching my options of medications. Good luck, keep researching.
Thank you. I found it difficult to adjust to the jump in my platelets - it’s definitely affected my mental well being. Feel more tired and l tend to ruminate
My sleep has never been great! But the psychotherapy helps and l diet and force myself to excercise.
I too are very concious of exercise, I am still working with a very active job!! Nursing. As they now say "sitting is the new smoking" I am on holiday at the mo so able to go out walking everyday for 45mins. My sleep is good, which I know is very important.
I also have ET, diagnosed 2016. I am on aspirin and hydroxyurea 4x 500 mg weekly. I’m considered ‘high risk’ based on the combination of age and Jak2+.
I felt anxious too at the thought of commencing hydroxyurea. However, it’s been plain sailing for me, no side effects at all. It is a well tolerated drug for the majority of people. My platelets are stable at around 320/340. I’m so grateful for the protective factor hydroxyurea offers me against thrombotic events.
That’s good to hear. My haemotogist also thinks it’s the right way to go. Do you still take aspirin in conjunction. I travel a lot and inject heparin on long flights . Wondering if l will still need to do that . It can be a nuisance especially with some security at airports
Hello, if you can tolerate interferon, there is an advanced version of it in Germany, called BESREMi, which is injected only once in two weeks with very few side effects. Ask your haematologist.
Hello Dovme and welcome to our forum. We have lots of information on our website about the different medications used to treat MPNs, it might help you to have a look
Hi I’m 48, been on hydroxy for 3 years or so (4 x500mg & 3x 1000mg in the week), felt so much better as soon as I started. Hadn’t realized how low my energy levels were. Went from 970 to a normal 400ish platelets. Lost quite a bit of weight last year ( on purpose) and my haematocrit levels are now normal too. Just make sure you have strong sun cream with you at all time, your skin will really thin down. All the best
Welcome to the group. I was diagnosed ET JAK2 last May, on 500mg hydrea and 75mg clopidergrel daily, platelets have been within normal range( between 270-370) since started hydrea, at the moment only 6 days a week on hydrea and clopidergrel daily. Just turned 70 and still manage to walk 4.5 km every morning.
Welcome to the group! I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. Still alive and kicking and able to maintain a good quality of life despite some challenges.
The standard protocol for ET once you reach age 60 is hydroxyurea and aspirin. Many docs follow this protocol, but not all do. Many people tolerate HU without significant problems, but not all do. Some, myself included, are HU-intolerant. A couple of points to understand. HU is a toxic medication with a low therapeutic index. It interferes with DNA activity, slowing down the production of blood cells by hemopoietic stem cells. There are potential adverse effects that may need to be managed at therapeutic doses, but not everyone experiences them. For many people the benefits of HU outweigh the risks/adverse effects. For others the opposite is true. There are other medication choices if you need cytoreduction. However - all of these meds have their own risk/benefit profile. We each have different needs and we each respond differently to treatment options.
It is really important to find a doctor who has expertise in MPNs. Not all doctors, even hematologists, have enough experience with MPNs to provide individualized care. This is a list of patient-recommended docs with MPN expertise mpnforum.com/list-hem./ .
Glad to hear you are taking steps to deal with the stress. Unmanaged anxiety is not a good thing and can definitely have a negative impact on your body. I have taken up the practice of Qigong to help with generating wellness and peace of mind. It has been very effective.
It’s very inspiring and comforting for me as a newbie to hear about peoples journeys! My haemotogist so far seems great. I am not his only Mpn, he sees other ET patients and so far l trust him. He is also very empathetic. I try to practice mindfulness but am not very disciplined but will keep at it,
Glad to hear you found a doc you like. The nice thing about QIgong (Tai Chi is one form of QIgong) is that you do not have to be disciplined to start with it. You just have to be willing to try it and have an open mind about what it can do. You do need to have a knowledgeable teacher (Sifu) - not just some karate guy who took a Tai Chi course.
I was a similar age diagnosed with ET at 60 years of age. I have been on hydroxy for nearly 2 years. Terrified at first but pleased to say, no side effects and doing well. Please let me know how everything goes and will be pleased to support you with any worries.Very have pyschtherapy, no luck with that here!
Welcome! I joined this forum recently and have seen that members between them have a mass of experience and knowledge about MPNs and their treatment, so it's a good place to get answers and support.
I received an early "birthday present" just a few months before my 60th birthday: a new diagnosis of JaK2 ET. That was about a year ago and I was put onto daily aspirin etc. By late last year my platelet count had gone over 900 and I was started on oral chemotherapy (hydroxycarbamide/hydroxyurea 500 mg daily) just a few weeks ago. I am still coming to terms with this, as it already seems to have turned an everyday cold into a bad one, and if this is typical it could mean limitations on what I can do in future ...
The NHS here in the UK is not famous for its holistic approach to treatment. I would love to have been offered a little psychological support, especially as all this came up at a difficult time in my life and my mental health is not especially robust in any case.
Thank you and you too. Hope you feel better from the cold soon The medication does scare me but l am also encouraged by the many people who do ok on it.
I travel a lot and hope l can continue. I suspect l need to consider things more carefully take precautions and think abt where l go as well as more common sense stuff like hand washing and wipes more often etc and consider the quality of any local services in case l should need them My brother died last year aged 70 from a heart attack and my partner had lymphoma in remission so l feel relived that that l am closely monitored and that it is ET. Therapy helps a lot. I have only just started telling my friends it’s a cancer. A bizarre and uncomfortable experience for me. My platelets are high part of me wants to get on with it but the haemololgist says all is good on aspirin and 60 is the magic number
Hi it's me again I read more about you after I posted my Japanese holiday post. I was 65 when I was diagnosed but I'd been ill for around 6 years with all manor of illnesses before I got quite sick. They put me on Hydroxy and asprin immediately because of my age. I remember being so upset about taking it after reading the possible side effects. It took me days to take the first tablet. Apart from a little itchy skin and a sensitive mouth I don't really notice any side effects, I feel so much better so it's worth it. For me keeping well hydrated, which I treat as another medicine, doing some exercise and pacing myself is key. I don't overload my week, I don't entertain too much or go out too much. If I overdo things physically I know straight away, I get very tired. Listening to your body is essential. Alcohol has always been a dilemma, should I cut it out altogether but I haven't, sometimes, like on holiday I drink too much. I've just been reading the replies to your post, I think you've had quite a bit of sound advice. I think you'll learn what's good and not good for you pretty quickly and you always have your 'friends' here to help. I'd like to follow your progress, I wish you all the best.
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