Hello I am new here. Recently diagnosed with ET JAK2. I am Seeing my Hematology Consultant on Thus this week to discuss plan/ treatment. I am 36yrs old and a Mother of 3 yrs old and a Single Parent .I am Currently struggling … struggling with fatigue. I just can’t shake it . I am not coping even with light house hold chores . I am a Health Care Professional and works long hours and haven’t been able to work the last few weeks… I am here confused and stressed out I don’t know what to do . Is this fatigue just a phase ?? Does it get better with treatment?? Right now I just want to hide and scream
Hi @Faith2023 and welcome to the forum. I’m so glad you posted. It sounds like things are really tough at the moment. There is so much to take in and to get your head around and the fatigue must make all of that so much more difficult to manage.
Have you got friends and family who are able to help and somebody to come to the appointment with you?
I wonder if a call to the support line might help - only when you are ready. Sometimes it just helps to talk things through, especially before your initial appointment.
I think we will all completely understand wanting to hide and scream. I know I felt like that, especially at the beginning when I didn’t know what was going on and what the plan was. Everything can feel very out of control. On here you can just say it as it is - we are all here for you X
Welcome to our forum. I really sympathise with you. I have ET/Myelofibrosis Jak2 positive. I too struggle with the fatigue massively. I’m not knocking my team at hospital but I never feel as though the fatigue is taken seriously. It’s massively debilitating & the smallest of tasks seem so hard. Just to pre-warn you treatment isn’t always started right away & as your young for this condition your platelet count would have to be quite high for them to consider treatment other than a daily dose of aspirin. When you go to your appointment go armed with all your questions & maybe if possible take someone with you so that all information given can be taken in by two of you. You will hopefully also be given a clinical nurse specialist who will be there to support you when needed. I always suggest that looking at your diet too can help. Eating an anti inflammatory diet can help boost all the required vitamin intake that support a healthy immune. Please keep us updated how you get on id personally really love to know. I hope that your getting support from family & friends & that your employer is understanding. Warm wishes
A great big welcome @Faith2023 and you are now part of our forum family.
I am not surprised that you feel confused, stressed and really struggling with fatigue and just want to hide and scream, I have another blood cancer but have definitely had all your feelings.
My fatigue can be made worse with what personally worries and stresses me, let alone overdoing it emotionally, medically, physically and practically.
@Nichola75 and @JoJoflowergirl have given you great advice.
Is your employer supportive?
Do you have any family or friends to help you?
Really look after yourself and be very kind to yourself and please keep posting.
Welcome to this very helpful place Faith - i was diagnosed about 9yrs ago - I had been suffering tiredness and whole body aches but I’d recently had a bowel op for cancer so thought that was why - so i didn’t go to doctors - but my bloods were being taken on a fairly regular basis and my doctor noticed my platelets were too high so sent a blood sample to Addenbrokes and it came back ET Jak2 - i was put on Hydroxycarbamide on a fairly high dose which brought them back down and then my dose was brought down and monitored - until 2 years ago it worked a treat and i led a pretty normal life - i had a hiccup 2 yrs ago and they put me on interferon but that made me very ill so I’m back on Hydroxycarbamide again - apart from mouth ulcers now and then I’m living a normal life and the ET doesn’t really impact on me st all - i do get tired but at 70 could also be my age - i think once you’ve been given medication to bring your platelets down you should feel an improvement in your tiredness - its scary being given any kind of cancer diagnosis so i fully understand your anxiety but there are alot of people who have ET who live pretty normal lives - I do hope you get the help you need because its not easy as a young mum feeling tired all the time - here is a good place though to vent your feelings or ask for advice - take care - Jenni
My situation has some similarity with yours - but I am in my 60s! I was diagnosed with ET JAK2 last year and since then have been on Hydroxycarbamide twice a day. The drug has helped in that my terrible headaches have eased a lot, but I’m afraid the fatigue is ongoing. I have big family responsibilities too and it is extremely hard to balance everything. I think the main advice I would give is to be kind to yourself and accept this condition (& it’s treatment) can have a huge impact on your life - despite what your consultant may say! Forget about housework and if you have anyone around you who offers help, then accept it, or even ask someone to step in. Playgroups, music groups, mum’s coffee mornings at local churches etc may help in stimulating your 3 year old without exhausting you too much. If you are in the union at work ask to see your rep. Maybe some changes could be made to your shift patterns or to your working hours, on a temporary basis at least. Also the helpline here is very supportive, so you will only get help, not judgement, if you pick up the phone and talk . You are not alone and people here will at least understand what you are going through. I know many do find life gets a lot better when treatment starts, but experiences do seem to vary a lot, as you will see from glancing through the many posts here.
Take care of yourself!!
Hi all, please forgive me not very good at this. I have just been told I have chronic leukaemia and I feel so scared and lost does life get better
Hi @AnnR23 I am so glad that you have found our forum and had the courage to post
If you have just been diagnosed it is so natural to feel scared and lost, I felt I was the only person in the world in my situation. I felt I was in a surreal bubble with the world going on around me.
Please do take your time to read posts on our forum, there is also a lot of information on the Blood Cancer UK website and if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 888 2080.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 19 yrs ago and I am a lot fitter now than I have ever been, I have become a Pilates girl and a great walker.
I have reassessed my life and decided what I want to do and with whom.
You are now part of our forum family and I would be interested in hearing more about you.
Have you any other support?
Please give yourself time and be ever so kind to yourself
First of all in time you will see the diagnosis as a blessing…you know what it is now and you will get lots of help.
I.have the same condition and it was fatigue and itching that set my alarm bells ringing
I presume you will be checked for Anemia as i got that severly and was why i got very fatigued.
Stress and worry may contribute towards tiredness as well as our organs working overtime
In time i hope your medication/ treatment helps and you feel better soon
I still.work…drive a lorry and though of course i still feel tired its not like it was when around i was diagnosed…in fact i was in hospital for 10 days and couldnt walk!
So it will get better…take one day at a time…little steps
Remember to keep hydrated…its very important with this condition.
All the best …Lee.
A very warm welcome to the forum. I am so sorry to hear of your diagnosis of Chronic lymphocytic leukaemia (CLL). I hope you are doing okay today?
Being newly diagnosed often feels like an emotional roller-coaster & may also leave you with a lot of questions about a lot of things. So please do give our helpline a call on 0808 2080 888, if you think it might help to talk things through.
I also wondered if it might be helpful to make you aware of our information booklet for those who have recently been given a diagnosis as it brilliantly covers so much from practical tips, to steps around what happens next and lots of emotional support in between. It also gives some insight into the care and staff that will be part of your haematology team.
You can order it online for free postal delivery or download it via this link Ann- Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop. We do also hold quote an amount of information around Chronic lymphocytic leukaemia (CLL) on our webpages here- Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK.
Again Ann please do know that our support team is very much here for you should you ever need to talk with us.
Take Care, Lauran
@Leefer @Nichola75 @Erica
Hello and Good Evening
I hope you’re all doing well.
I would like to thank you all for your encouragement and support. I would also like to inform you that I had my Haematology appointment today. It was short lived so I couldn’t ask all the questions I got. I felt very rushed… How ever the Team is planning to start me on some interferon alpha injections for symptoms control.Any suggestions on the side effects?. I was given a leaflet to read more about it. My next appointment in 3 week’s.
Good Morning @Faith2023,
Thank you for keeping us updated. I am pleased you have been seen and hopefully starting this drug will reduce some of your symptoms.
I’m sorry your appointment was rushed, we know how frustrating that can be when you have a lot of concerns & questions. Please do know if you think talking to our team might help, do know we are very much here for you- 0808 2080 888.
I’m sure there are others on this forum who have experience with Interferon, but in case it’s helpful i have linked to a webpage which talks quite a bit about your new drug- Interferon alpha – MPN Voice.
Take Care, Lauran
Hi @Faith2023. Thanks for taking the time to update us.
I feel frustrated for you. I have always been given what time I need at appointments and would feel very frustrated if I didn’t have that time.
As @LauranBloodCancerUK, others will be able to share their experiences of the medication.
Have you got a link that you could email any questions to. Clinical nerve specialist?
We will wait to here how the medication is working for you.
Take care x