feeling rotten: I am new here. At the moment my... - MPN Voice

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feeling rotten

home1970
home1970

I am new here. At the moment my red blood cells are low. Fortunately the white blood cells are normal. I have been diagnosed with myelofibrosis in May 2018 just by chance. It was caught in the early stages. The worse thing for me is the lack of energy and bruises. It has been a learning curve. Lucky I have a group of close friends and my jk little dog. I need to chat with anyone with myelofibrosis.

10 Replies
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Hi. I was diagnosed with myelofibrosis nearly two years ago, and the main factor that drove me to seek help was unexplained fatigue. The blood clots I’d had in my lungs had been described as just one of those things, tho with hindsght they were most likely part of the MF. I’m glad you found this forum - its been a great help to me.

Do ask any questions you want: people here have, between them, a great fund of experience and knowledge. And Maz, our moderator, can link you up with a buddy if you’d like.

The treatment world is changing fast, and the consensus is that being linked to a specialist centre helps a lot.

Keep posting, and you have all my best wishes

Rachel

Hi home1970... :-)

Cool rainbow lorikeet too... We have tons of those here in the land of Oz...

My name is Steve, & I also have MF diagnosed in May 2016. As Rachel mentions, this is the best forum for people with MPNs, and between us all there is a wealth of knowledge. Don't be afraid to ask questions as everyone here are full of empathy & compassion for each other.

Maz, the coordinator can also send you some literature if you'd like some... Some of us want to know as much as we can about our various conditions, & others are happier to just carry on regardless. There is not right or wrong just that which works best for you...

Fatigue is a bugger... But all part of this journey I'm afraid. Personally, I find that learning to exercise and manage my diet well really helps me. But as I said, we are all different, and what might work for some is not necessarily the best for others...

Nevertheless... welcome to our little club...

Steve

Welcome.

I can’t help on the MF front as I have PV but I just wanted to say ‘hello’. Following some of the posts here it seems that the understanding, management and treatment of MF is one of the fastest areas of development in the MPN world. That’s exciting - though it means quite a lot to get your head round. I’m sure you’ve searched out some recent posts and links here on this Forum.

I’m sure you will get answers, support - and some smiles and laughs - from this Forum. Just keep asking questions, rant if you want.

I was diagnosed April 2017 with MF. I feel I’m new too. My red blood count was low but they perked up and are at a normal level. My two complaints are fatigue and bruises. I am taking steroids, previously for another condition and have stayed on them as they seem to help platelets. Ah! My platelets are quite low. Lowest is 21 and 34 the highest lately. I’m at a ‘wait and see’ time. I’m determined to live as close to a normal life, day to day as I can. My over all health is good. I eat well and try to stay active. I have a step counter I wear to remind me to move at least 5000 steps a day. Lately, I have had a few pajama days. I try not to worry as worry is negative and feeling negative seems to make my body less happy. I have a caring husband, John, and a protective cat, Austin. I have a good circle of friends and a strong faith. I still get scared at times. No one person with MF is the same. I was given a scary prognosis last October of 30 months, when I was seen by a specialist for stem cell transplant. THAT scared me! But as I’m feeling alive and have many good days I am determined to keep alive for as long as I’m predestined to live and keep smiling along the way.

My advice? Do what makes you happy, keep as active as you can when you have those good days and pace yourself so you don’t wear yourself out too soon and eat healthily. I wish you the best. Jan 😊

home1970
home1970 in reply to Janll

Thanks for your support. I am going on holidays soon.The specialist suggested iron injection to boost the red blood cells. I am under the care f Professor Claire Harrison team. I am in the best care at Guy's hospital. I will try to beat you on the steps of at least 6.000 steps with my dog a JR name BLUE. CARRY ON BEING POSITIVE.

HOPE TO HEA FROM YOU SOON.

Janll
Janll in reply to home1970

I hope you have a wonderful time on your hols. Pro. Harrison was consulted regarding my case. I do believe you are in excellent hands. I’m in Weston-super-Mare. You have encouraged me with my steps. This past week has been bla, but I am determined to get my steps over and above 5000. Cheers, home1970. Jan x

Coradelphine
Coradelphine in reply to Janll

Hi there

Firstly when I asked my haematologist for a prognosis he told me that it was impossible to say as there wasn’t enough research, or cases to support a ‘timetable’ - my term not his!! My specialist nurse told me 5-8 years but my thought is how could they know so far in advance?🤣

I too suffer from fatigue and lots of bruises some bleed as my skin is now quite thin on my arms. I have been put in Eprex injections once a week, which my husband or I do at home. I definitely feel less fatigued. It may be worth asking your specialist next time you see him?

Good luck and let’s hope there’s some new breakthroughs in medicines

All good wishes

I was diagnosed with MF 1 year ago after 12 years with PV. The fatigue is the worst symptom for me and it would seem so for others with MF. If anaemia is one of the reasons for the lethargy then you should be able to have a transfusion; i had one yesterday and I do have more get up and go today. Also, after my haematologist attended a conference in Stockholmt she told me that there is suspicion/some evidence that persistent anaemia can cause cardiomyopathy so she is now less strict on prescribing a transfusion.

It makes a difference if you have primary or secondary MF in so far as primary is lower risk. As has been said it is important to have a good Dr keeping an eye on things and, if needs be, the option to be referred to a specialist must be available especially if things change or you feel uneasy about the way your treatment is heading ; remember MF is pretty uncommon.

The advice above is all good, and sorry I've not much to add. I wish you well on the journey with this strange illness and good luck

Tim

Oh how I hope you get as much support from fellow MF sufferers as I have from fellow ETs

It’s daunting.

Love and hugs

Mazcd
MazcdAdministrator

Hello home1970, welcome to our forum, I would advise you to read as much as you can on our website mpnvoice.org.uk about MF and also look at some of the videos we have from patients and haematologists, and if you would like any of our booklets please email me at maz.cd@mpnvoice.org.uk and I can post them to you. Kind regards, Maz

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