Newly diagnosed ET JAK2

General chat
1

Continuing the discussion from Newly diagnosed ET JAK2:

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 :scream:[quote=“JoJoflowergirl, post:3, topic:7282, full:true”]
Hi @Faith2023

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 :cherry_blossom:
[/quote]

Hello @Nichola75 ,jojoflowergirl, Erica, Jenni, Mary T and Leffer

Thanks for such kind words. I am humbled .I am glad to have joined this forum and also glad to hear personal experiences from all of you. I have also learnt a lot from this forum .

I was diagnosed 2 months ago and i was put on aspirin. I am glad they found out what was causing my migraines, weight loss , fatigue and itchiness as these were my main symptoms. But I haven’t gotten my head around it yet . I am experiencing mixed emotions. I am happy and sad at the same time, actually mostly angry :angry: with myself.

I had a relationship breakdown that left me on my knees and just as I thought was turning a corner., am now dealing with another illness. I feel like I am to blame … I was going through so much heartache and don’t think I handed it well.

I have told my family unfortunately they don’t live close by … my Parents are long gone which makes me angry too… because I need them. Times like this that I feel like I need them most and I wish I could bring them back . I have a wonderful friend who has been my rock and she looks after us when she can.

My work has been flexible work though still long hours so I don’t get paid if I don’t work… I am wishing now I had a permanent post.

Otherwise I don’t know what to expect out of my Appointment today . I feel all anxious and can’t sleep . I just want to feel normal. Thanks once again

2 Likes
2

Hi @Faith2023 so you have your appointment today, perhaps jot down some questions you would like to ask and your symptoms, their severity and impact on your life, I know my mind goes blank when I walk into a medical room.
I think mixed, differing emotions are very natural, so much has happened to you.
Personally I do not think you are to blame for your condition but do you think you might like some help, if so I found that counselling helped me unpick all the mixed, differing emotions I was having, they were exhausting, especially my anger, and definitely not helping my fatigue.
Please let them know at your appointment today how you are feeling and your GP might be able to help with local services. Macmillan and Maggies centres or equivalent sometimes offer services too.
I expect it is also hard work looking after a 3 yr old.
Please let us know how you get on and be ever so kind to yourself, you are part of our forum family now.

1 Like
3

Hello @Faith2023,
I hope you are doing okay today?
I am super pleased you have this forum too. We appreciate how isolating having any condition can be let alone one that is rendering you unable to function to your usual standards.

It sounds like you have got a lot to contend with right now so it is no wonder you’re feeling somewhat emotionally & physically drained.

It is as erica has mentioned really important you are transparent with your haematology team about all your symptoms and worries & i do hope you got on okay at your appointment?

Can i ask faith, have you been given the contact details of a clinical nurse specialist team at all?
I ask this as it is important for you to know who you can contact in between appointments if you are worried about symptoms. They can also be a great support in connecting you to local welfare rights teams which can offer financial support.

Please do know that if you think it may help to run anything through with ourselves, our support service team is always here for you- Blood cancer information and support by phone and email | Blood Cancer UK

Do take Care, Lauran

2 Likes
4

, @LauranBloodCancerUK @Leefer @JoJoflowergirl @MaryT @Nichola75 @ Erica
@ Des-mum
Appointment times emphasized text
Hello just to let you all know I have had my Haematology Review today and although I feel like my was rushed and I didn’t get to ask all relevant[quote=“LauranBloodCancerUK, post:3, topic:7287, full:true”]
Hello @Faith2023,
I hope you are doing okay today?
I am super pleased you have this forum too. We appreciate how isolating having any condition can be let alone one that is rendering you unable to function to your usual standards.

It sounds like you have got a lot to contend with right now so it is no wonder you’re feeling somewhat emotionally & physically drained.

It is as erica has mentioned really important you are transparent with your haematology team about all your symptoms and worries & i do hope you got on okay at your appointment?

Can i ask faith, have you been given the contact details of a clinical nurse specialist team at all?
I ask this as it is important for you to know who you can contact in between appointments if you are worried about symptoms. They can also be a great support in connecting you to local welfare rights teams which can offer financial support.

Please do know that if you think it may help to run anything through with ourselves, our support service team is always here for you- Blood cancer information and support by phone and email | Blood Cancer UK

Do take Care, Lauran
[/quote]

questions, my team are planning to start me on interferon alpha injections
to see if my symptoms will improve

1 Like
5

Hi Faith

I am so sorry to hear that you have been diagnosed with this disease , it is a very anxious time and I can empathise greatly with you. I am nearing 70 now and was diagnosed almost two years ago after a routine blood test and confirmed JAK 2 positive. My HB and HCrit were eye wateringly high, it was such a shock as I felt fine in myself. I was treated initially with aspirin and venesections but the 18 months ago was put on Hydroxycarbamide which has been a bit of a game changer. I’m not as tired as I was, which as a busy grandmother of 6 grandchildren is a blessing I can tell you. I have a great team supporting me in Haematology, but it is natural to feel anxious at times and I won’t lie, it is with your every day mostly because of the restrictions in diet, which I have found very difficult at times. Talk to friends, relatives, it all helps. Good luck with our appointments, things will get better and you will begin to feel like you again, you are doing really well and you should be very proud of yourself for coping with this.

3 Likes
6

Hi @nancygreenway thanks so much for your post, welcome, your post is much appreciated and you word it so well, I really related to it.
I really look forward to hearing more about you, look after yourself.

7

Thanks Erica for welcoming me. I was pleased at last to find this forum, I tried to connect with something like this after my diagnosis, as I felt a bit at sea. I really didn’t know there was anything seriously wrong with me at the time. I’d had a few random symptoms, visual disturbances, palpitations and most oddly frantic itching when I got out of the shower, but around Covid time we all put up with minor peculiarities, I wish I hadn’t now. Its a lesson to anyone reading this, however odd it maybe, if you notice anything out of the ordinary, get it checked out. As I said previously, I was told to go on a very low iron diet. One of the things I had struggled with, is not eating anything with fortified flour in it. Here in the UK , all white flour must be fortified with iron by law to bring it up to the same level as brown flour. I have finally managed to source a mill which will provide me with unfortified flour, initially much against the owners better judgement, who thought I was from trading standards and he would be prosecuted! I really felt outraged at this and felt like a criminal, having to purchase goods on the ‘Black Market’. So much so that I contacted my MP who said she would raise the issue in the House, but sadly little has come of it. However, I am now eating bread and cake etc. again and have regained the stone I initially lost. I would be interested to hear from other sufferers with similar problems. This is not just about treatment and drugs , it’s about lifestyle and good quality of life, I’m hoping we can all help each other to achieve this.

2 Likes
8

Great to hear a bit about you @nancygreenway and I am so sorry that you did not find us earlier, Covid times must have been very isolating for you, adrift without a paddle for support.
I had to laugh with your ‘fortified’ flour experience as I worked for Trading Standards in a previous life.
The one thing about my diagnosis was that it gave me the opportunity to re-assess my life and what I wanted to do with it and with whom.
I had gone through my first half century on auto pilot making sure I earnt enough money to put food on the table (I still do not know what I want to be when I grow up, I am now 73yrs old)
I had never really done anything to keep fit apart from always being busy.
Mainly because of osteoporosis and scoliosis of my spine about 12 yrs ago I joined the gym and did Pilates and energetic dance classes till Covid struck.
Since we were allowed out for a walk I have taken up walking and go out every morning, we have a river and park spaces locally. I have carried on with Pilates with the local U3A which I had done for years.
I am fitter now than I have ever been.
I try and eat a normal diet of meat or fish and 3 or 4 veg. etc. with the odd treat.
Yes, I get fatigue which I manage on a daily basis. I have got to know how I tick over the last 19yrs since my diagnosis.
I am far more emotional, they are always on high alert and I don’t deal with stress well since diagnosis.
I love my music (anything from the 60’s till now).
I realise that family and friends are priceless more now.
I have other symptoms, but life is good.
I find our forum very supportive and I hope you will too.
Be kind to yourself

1 Like
9

Thanks Erica. Nice to make your acquaintance. We have to cease the day don’t we? My husband and I are off to the Carribean soon, never been before, so super excited. Cant wait.

1 Like
10

Oh @nancygreenway the Caribbean sounds just what you both need, enjoy, I am not surprised that you are super excited, I am for you.