I was diagonosed with et and also jak 2 positive back in September 2021,
I am on watch and wait and have blood tests every 6 months, as my blood tests are quite stable at the moment ,
I do get very tired sometimes but also have ibs type symptoms and wondered if anyone else suffers with this as I had a colonoscopy and endoscopy last year which both came back clear,
I find it has helped tremendously to read everyone’s blogs but has taken me a while to get my head around my diagnosis.
Hi@EveET ,Im jumping in here as I see you are mentioning IBS .It depends on what type diahorea or constipation. I was referred to a Dietician who was the greatest help and gave me booklets on the Low FOD map diet.
Certain foods can be impossible for the gut to digest which causes the problem so you eliminate these foods for 6 weeks then introduce gradually to see the effect on your gut.Over the years I had intensive investigations and bad attacks of pain the Barium enema showed up the problem for me but no one knew about the FOD map diet then . You dont mention this. Good to hear nothing sinister was found with your investigations.I’m settled now on the diet,ive gone gluten free,lactose free which suits . You can get mebeverine prescribed for cramps,or Fybogel mebeverine.Its worth investigating the low FOD map diet .I am on watch and wait for MGUS .I also get very tired so I pace myself (try)and drink lots if water.I hope this helps you feel more comfortable. Im glad to hear that you are stable just now ,long may it last .Its great if we can share to help others,happy researching.
Did I send to Eve Et its Wesleymag53,hope it reaches you
Hi @Wesleymag53 good question, I think it is very difficult as so many symptoms overlap different conditions.
Personally I always make sure different specialities are aware of my other conditions and common symptoms which is all I can do.
Please let us know how you get on and look after yourself, the shock of a diagnosis takes a long time to get over and can cause stress and anxiety symptoms…
If you would like to talk to someone the Blood Cancer UK support line is there for you.
Hi @Wesleymag53 ,
I hope you are doing okay today? Thank you for sharing this as I’m certain many others with a diagnosis of blood cancer are keen to fully understand their symptoms and indeed how related they can be to different conditions. As you rightly say it can take some time to not only understand what your diagnosis means but to understand how that will affect you.
It’s great your bloods are being monitored and they remain stable, however i appreciate IBS like symptoms can be really tricky to diagnose and indeed treat due to them typically being quite sporadic.
It may be helpful to keep a symptom diary which will allow you to track the length of time you are feeling these flares/symptoms and indeed can help identify any triggers which can then be later discussed again with your doctor/haematology team at next appointment.
As others have mentioned, please do know that our support service team are always on hand should you need any support or indeed to just talk things through- Blood cancer information and support by phone and email | Blood Cancer UK.
Best Wishes, Lauran
Hello Wesleymag53 - I have ET too, diagnosed for 16 years or so - yes it takes some while to learn all the elements of these conditions as it does effect so many different parts of us and learn what are typical effects of the disease. I wouldn’t say IBS symptoms are part of the MPN spectrum, they can come along with some of the treatments used but obviously you are on watch and wait. It’s good that your doctor has checked you via colonoscopy and endoscopy and that’s all clear. It is good to drink a lot of water with ET, that sounds very basic but good hydration is a real need with ET and is worth being aware of, having a little water bottle with you all the time - I guess the key is just that much more hydration than a “normal” person - and as an extra to what else you like to drink, water makes a difference in every day dealing with MPN.
You mentioned tiredness, having times of being very tired - that I am afraid is very much an ET symptom, even when blood counts are in normal range - it is something that can ebb and flow, can come on without warning, go again with no apparent reason and does tend to be part of the disease that you start to adapt to. I know i learnt in my early years what “boundaries” I could work within as to energy and tiredness - if I stayed within those it helped the fatigue - if I needed to do something outside that box I needed to rest up a bit the day before or I knew that I may have to have a few easy days after an event to recoup. I know with ET fatigue and its tiredness is very individual to each patient - so gradually you will find what works for you and the things that may stretch you now that wouldn’t have a couple of years ago. The other thing that can help with day to day fatigue is actually some gentle exercise - it’s the bizarre thing that you may feel the least like it but a gentle walk after the initial ten minutes actually improves the tiredness and is worth having as part of day to day life. It is a real see saw balancing act though as likewise the tiredness and fatigue can also mean at times needing to rest, recoup, take a nap, curl up for a while - and not get out and have a walk. You will get to know step by step what’s good for you and be able to discern the times a little walk helps and the times it’s curl up and rest (what i call stare into space times !) and both are good, never feel guilty for needing to rest.
Let us know how you get on
Wow, @Jilly20 what a brilliant post and such practical steps to helping symptoms which will be so useful for all of us blood cancer patients.
I especially liked your handy hints for living with fatigue, I am also a great advocate of some fresh air and appropriate exercise, it works for me. I think it is one good thing that I really realised during lockdown, the more I sat down the less energy I had and the less I wanted to do anything.
But never feel guilty for needing to rest, for me it is about getting to know me and how I tick.
Thanks again and look after yourself as well.
Hi everyone i am new so helllo again .i was diagnosed in may this year ET j2 positive i really dont know how i feel in a dream i guess my son 4 weeks before myself was diagnosed with chronic myeloid leukemia were both responding well to treatment oral chemotherapy im also on asprin an chlopredogral blood thinners excuse the spelling if in correct lol both blood thinners plus heart medication due to a heart attact 3 years ago my dr told me the heart attack could of triggered this and the blood thinners have helped me she has said he expects normal life expectancy .just lately iv been more tired abit achy hand going numb as thay were before diagnosis but gps were putting that down to carpal tunnel but my doctor as said its the ET . My son is only 29 im finding it really hard my doctor kept saying its ET not leukemia i said but my son has that she found it strange how we were both diagnosed in weeks of each other unfortunately its called bad luck . But were cracking on working and treating everyday a newday if one of us feel tired we help each other if we both feel tired w call in our Calverley one of my other children lol . The doctor wa going to do a genetic test has our cancers fall into the same bracket but after speaking to another doctor she said even though thay fall into the same bracket there not connected unfortunately its a case of bad luck . But were getting on with it attending our appointments and getting our bloods done and thats all wecan do and to stay positive .
Hi @TRACEY1969, thank you so much for sharing, and a warm welcome to the forum. I’m so very sorry to hear not only of your diagnosis, but that your son has been diagnosed with CML. It understandably sounds like a worrying and difficult time for your family- a new diagnosis can be a lot to take in, and we do appreciate it’s not easy going through the processes of tests, treatment, and so on. Please do keep in mind that we have a support line, and you’d be very welcome to call us and speak to a member of our Support Team, if it’d be helpful to talk anything through at all (0808 2080 888). I’m also certain you’ll receive supportive replies from others here, too.
In case it’s helpful at all, we have a booklet Your blood cancer diagnosis: what happens now?, which you can download or order via our website. We do also have information on CML, and a booklet about MPNs including ET.
Do take care of yourself, and let us know if there’s anything we can do to support you. Best wishes, Tanya.
Hi @TRACEY1969 so sorry that you and your son have had this bad news. It must be a lot to take in. Only speaking from experience and from the experience of other people on this forum this is really the time to write down all the things you want to know and ask your medical team so that both of you are clear about what to expect and can support each other. I know having the support of people around me made a big difference when I was diagnosed, you really do find out who your true friends are. Let us know how you get on.
Thankyou for your warm words to both responses i will keep your words in mind and i will keep you updated many thanks
Hi @TRACEY1969 a great big welcome.
It is more than bad luck that you and your son have both had such diagnosis and within a short space of time of each other, but it does mean that you can support each other and it sounds as if you have the support of your other children as well.
Please do not under estimate the shock you, your son and family must be in compounded by both your diagnosis, be very kind to yourselves
I find it so difficult, but do ask for emotional or practical help it does make a difference.
Also do use us on our forum to say how it really is for you and the wonderful Blood Cancer UK support line is also there for you.
I look forward to hearing more about you, look after yourselves
Hi erica thankyou for your response what a lovely group and supportive
Its very hard at the moment we both have been told by doctors normal life expectancy
Even though that is a possitive its still very worrying my son is only 29 with 2 young children lifes so unfair .its the uncertainties of
What the cancer can do thats the worry we have brilliant emoncologists sorry if the spellimg is wromg lol . So one day at a time xx
@TRACEY1969 I was diagnosed with Chronic lymphocytic leukaemia (CLL) 18 yrs ago and I am a very lucky girl and it has given me the opportunity to re-assess my life and what and who are important to me.
So, yes one day at a time and in Rod Stewart words ‘Love the life you live and live the life you love’
Enjoy your children and grandchildren and spoil yourselves