myelofibrosis

[glyndale]

Anyone diagnosed with mf and what are the main symptoms .Thanks.

[Otterfield]

My symptoms were extreme weight loss and really bad itching. Also very bad fatigue. I assume from your question that an MF diagnosis has now been confirmed from your BMB. Has your consultant discussed treatment?

[glyndale in reply to Otterfield]

Hello I see my consultant on Wednesday to discuss any treatment I might need ,so will know more then.

[Ebot]

Hi there. I have PV rather than MF but there are plenty of folks on this Forum that do, so I’m sure you’ll get plenty of feedback. Meanwhile for lots of sound, up to date information and advice check out:

mpnvoice.org.uk

Wishing you well.

[glyndale in reply to Ebot]

Thank you

[champ30]

I have MF.... but best wait to see at what stage you're diagnosed as this will affect treatment.At the start I was very lightheaded , very fatigued and anaemic.I am transfusion dependent now.I have had MF for 5 years.

Lynn

[glyndale in reply to champ30]

Thank you

[Grizly]

Hi. I’m Cal-r positive primary MF.

It seems the symptoms are up to the individual I sometimes I get the sweats and I mean sweating for Wales I sometimes have cramp sometimes painful but always fatigue, tiredness and exhausted. I don’t have itching though

[glyndale in reply to Grizly]

ok thank you

[pontygirl]

Hi,

I have MF coming up 5 years I was diagnosed March 2018…

I was 66 years at diagnosis and found it hard to accept, future / outlook seemed rather bleak in my eyes at that time…

Firstly I personally needed to find out everything I could about MF and my prospects going forward..

I found this amazing forum and the wealth of information that other members bring to it..

I researched online and read various articles to simply understand to some degree…

Once my Haematologist Consultant discussed what stage I was at and started me on the drug Hydroxycarbomide / HU as some call it, I admit I was terrified of taking Hydroxy as are many at first..

I personally took 2 weeks of staring at the box of HU for worry of swallowing the Drug and any side effects…

I eventually realised I needed to give it a chance and started the drug..

My platelets took approx 4 weeks to really respond and dropped significantly…

Side effects for me personally were minimal almost Zero, all that worrying was for nothing in my case.

However we are all different and therefore react differently, many on here have been taking HU for many years without issues, others have had issues but our Haematologists have alternative drugs to prescribe.

Initially I believe from the stats here we all appear to start on HU…

I would suggest you read up on HU and any Medication you may be prescribed..

Knowledge and Understanding of our Meds is Important..

Make a list of Questions to ask your Haematologist and if you don’t understand, ask again and write the answers down…

If you are comfortable take someone with you, two (2) sets of ears are better, and your companion will hear things you may not pick up on..

Anything you missed asking about add it to a list for the next consultation…

Knowledge is Self Empowering and reassuring to you, and asking questions is part of that process of understanding and living with MF..

I have read here of patients that are unhappy with their clinician be it their Haematologist or ??..

Remember that you have the right to respectfully ask to see an MPN SPECIALIST, as this is a very specialised field of medicine, not run of the mill it’s Rare.. Your Haematologist will write a referral request once YOU have decided who you want to see for a Second Opinion….

A Specialist will have huge experience and expertise of MPN’s.

Maz our wonderful leader will be able to give you a list of Specialists in your area or the nearest location..

At diagnosis I was not long retired from my career of Nursing and knew absolutely nothing about MPN’s..

Same with any Clinician I have seen for other issues not MPN, they are inquisitive about this rare condition.

I thought my life was over, doomed etc but I am doing okay and will be 71 years in January 2023 I didn’t think I would see 70 years of age.

Drug wise I have moved on to Ruxolitinib / Jakafi after several years on HU..

My biggest issue is fatigue and I developed Bone Pain, Ruxolitinib sorted the Bone Pain..

Fatigue I know my limitations and if I need to rest for a couple of hours I do so…

There is research into MPN’s and slowly I have seen a couple of new Drugs emerge..

Of course the only cure is Stem Cell Transplant, unfortunately for me I am not a good candidate due to having suffered two (2) TIA’s , small strokes due to being a Migraine sufferer back in 2007 etc..

However there are folk on here that have had SCT successfully…

Questions Questions are vital in learning and living with MF in my opinion of course…

You will find your way through this and live with it as do many of us on this forum…

For me at present I need a Hip Replacement and that’s my Biggest Issue Not my MF …

That is controlled and I am Alive, I obviously have Good & Bad Days with MF, but I take each day as it comes…

Good Luck with your upcoming Consultation, remember Ask Questions….

Kindest Regards

Maria 😊

[glyndale in reply to pontygirl]

Thank you for your reply and all the information, I will certainly ask my consultant a lot of questions, best wishes ,Glynis .

[Flyingsteamer]

Hi Glyndale, I was diagnosed with Primary MF a couple of months ago. My symptoms were extreme muscle fatigue and breathlessness, I was diagnosed as having severe anemia (Hb down to 53). After some tests and eventually a BMB I was diagnosed with MF. I was invited to take part in a new clinical trial (that new my number is 001!), the trial being undertaken in the UK and I believe France is called FEDORA. I am currently 3 weeks into pretreatment medication (Fedratinib) and feeling a bit better although still reliant on transfusions, next week I start on Ropeginterferon injections as well. I wish you well.

[glyndale in reply to Flyingsteamer]

thank you for your reply,glad your in a trial that's very hopeful,wishing you all the best.

[Emmyroos in reply to Flyingsteamer]

That sounds like a very promising trial. Good luck! Keep us posted.