Recently diagnosed with MF

[KristiJo]

I've came looking for support on the new me. I've slowly been telling my family about my diagnosis. It's been really hard. I still haven't talked to my mom about it. She's 83 and has just been recovering from a surgery and getting used to a pace maker. This is going to be hard on her. So I came looking for support and all the information I can gather to make my talk with her a little easier.

[mhos61]

Hello Kristijo, welcome to the forum. I'm so sorry to hear of your recent MF diagnosis. You will get all the support that you need right here, and the administrator (Maz) can post you out booklets on MPNs. There are people on this forum who have MF and are better equipped to answer any questions that you may have, I have ET.

I do understand how you feel about your elderly Mother. My Mother is 90 and I have chosen not to tell her. She depends on me so much and I know that she would have took it hard so I questioned 'what would be gained from telling her?' I have the support of my husband, daughter and son if need be - but honestly, my main support comes from this forum. I'm not suggesting that you do likewise - just that it is an option.

Take Care

Mary xx

[MFBMT2011]

MF can move quickly or slowly. There are drug treatments that can help with symptoms and some people that have had MF for many years. There are others like me who have had stem cell transplants, mine six years ago, which is the only potential cure although it is not suitable for all. There are frequent trials as doctors look for a cure.

It all depends on your diagnosis, stage and general health. Where you live and the medical options are important e.g. USA different to U.K. So we need more info' to help. What have you been told so far?

So you have much more to find out. Have a look at the mpnvoice website and you will see stories/videos from patients that could help. Have a look at MPNForum, a free online 'magazine' that has patient and medical articles

Ask questions here too to expand your knowledge as there are many willing to help.

Best wishes

Chris

[KristiJo in reply to MFBMT2011]

Hi Chris

Thanks for your reply. I've been tested for Jak2 and Calr both have came back as not detected. On Friday they decided to check me for the MPL gene mutation. I've been thinking that them not being detected is a bad thing. If the mpl is also not detected is that what they call a triple negative? That has me really worried. I'm 56 and live in the USA. I'm currently not having any symtoms besides bad blood tests. high white blood count. I was tested also for Myeloid leukemia and that came back negetive. an enlarged spleen seems the worse problem that I have. My Dr told me I'm a mystery. Not very helpful.

[MFBMT2011 in reply to KristiJo]

Don't know enough about MF to answer your question as my brush with it was fleeting as I had a definitive diagnosis and quickly went into SCT. Look up MPNFORUM and join their private Facebook page, nearly 1,000 members, and and share your information there, someone should be able to help

Chris

[socrates_8]

Hey Kristijo...

Welcome to our rather small and exclusive club.

It can all be a tad overwhelming at first, or so it was in my case.

I was originally diagnosed in May 2016, as ET CALR+. Since then, and via a Bone Marrow Biopsy (BMB), my MPN was reclassified as Myelofibrosis (MF) – I am sure that you will become accustomed to all the various acronyms that are associated with having an MPN, in due course.

Like you, I also struggled with discussing my MPN with everybody at first. I am also my mother's full-time default carer (because as far as she is concerned she can manage everything just fine – well almost Mum is 82.

As Chris has mentioned below, our MF can move at various speeds and be at different stages when we first become diagnosed etc. I believe that I am somewhere in the earlier stages at present, however, my overall condition does fluctuate quite a bit from time to time.

Please feel free to ask me any questions that you might have and I shall do my best to answer them, within the capacities I have to do so of course. Try to be patient with yourself... Personally, I had a great deal of problems being patient with myself initially, and I also suffered a bit with depression, but I am coping much better today than I was when first diagnosed etc...

In any event, ask loads of questions, and research all you can, as I found that has helped me a great deal in my own journey, hopefully it will assist you also...

Steve

(Sydney)

[Bridie123 in reply to socrates_8]

Hi Steve, can I ask you what promted further investigation after your diognosis of ET with CALR? I have the same but have been more unwell and have had more problems since being on treatment! Which is hydroxy and clopidogrel. Thanks Carole.

[socrates_8 in reply to Bridie123]

Hi Carole...

Sure, no problem at all. It is all kind of a strange series of events in many ways. As I realise today, that I have been living with many chronic conditions that I had somehow merely learned to accept, and live with, when in fact they were symptoms of my MPN.

There are two (2) types of the CALR+ mutation, that I am aware of, and while some schools of thought suggest that the CALR+ mutations are less volatile and insipid, compared to say the JAK2+, that fact alone remains unproven in the greater scheme of things, in my view...

According to my blood test results:

"A 5bp insertion was detected in Exon 9 of the CALR gene. This is consistent with the presence of a type 2 - CALR mutation, and is consistent with a diagnosis of a myeloproliferative neoplasm (either ET or MF). Insertions or Deletions within the Exon 9 of the CALR gene are found within 15-25% of patients with ET, and 25-35% of patients with PMF."

Birdie, I am not a medical professional of course, and I have only researched my condition to the continuing best of my own abilities, through having access to scientific and medical journals (university libraries), that allow me to glean more insights into my own MPN condition.

My range of symptoms and no doubt side-effects, was at one time most extensive, and I for one could not tolerate HU at all. It also affected my mental stability through increasing depression, as did I believe the Interferon (in retrospective hindsight). However, the Interferon, did also produce the best results on lowering my Blood Platelet (BPts) levels almost back to a normal range (537), before I commenced taking Ruxolitinib (aka Jakafi).

My bloods had a huge mix of giant platelets, and under the sub-heading of Erythropoiesis;

was increased activity with nuclear-cytoplasmic asynchrony, cytoplasmic bridging and occasional

binucleate forms.

Myelopoiesis

; was increased activity and,

Megakaryocytes;

increased activity with large forms and some nuclear were of hypersegmentation.

I was also suffering from nose bleeds and bleeding gums at the time, and later learned that I had also suffered from a TIA in August of the preceding year, which all combined to make me place in the 'higher risk' category. There were quite a few other associated symptoms too...

My hands also cause me great pain at times, and for quite some time my nail cuticle had almost become completely fungal looking aesthetically. I was forever trying to hide my hands from the world... in abject embarrassment. I had tried almost everything known to medical science to clear them up, but none of that helped with the severe pain that often accompanies my condition.

Generally, at that time,my Haematologist thought it best to undergo the BMB, and that was when my diagnosis was shortly thereafter, reclassified as MF.

How are your bloods & BPts at the present, what are they showing you and your medical team? They are really the best people to quiz over your concerns...

Carole, we are kind of hijacking Paul's message here, but I am happy to help as I may, perhaps you should message me privately if you wish to ask any further questions - Socrates_8

By the way, the procedure for a BMB is relatively painless, or at least it was in my case. I barely knew it had happened until it was all over, and then there was just some slight discomfort for a few days afterwards... But nothing to be afraid of.

Hope something here helps...?

Best wishes... & do let me know how you get on

Steve

(Sydney)

[Bridie123 in reply to socrates_8]

Hi Steve, thank you for replying. At the moment I am in between Haematologist and don't see the new one till the end of may. The first one has said I've got CALR deleted ET. I have also had a bmb which was consistent with mpn,it also showed at least 2 prominent lymphoid nodules and PCR amplification was consistent with the clonal population B cells. A CT scan showed nothing but a slight swelling of my liver so he said I'm to forget about it !

Regards Carole

[socrates_8 in reply to Bridie123]

Hi again Carole...

Well, based on that, it sounds as though your CALR+ mutation is Type 2.

My BMB showed a Grade 2 level of scarring to the bone marrow on the scale represented from 0-3. Which probably translates to early stage MF, or so I am led to believe.

I occasionally have lumps under my arms that seem to come and go. I do not ever recall having had them before I commenced these cytotoxic medications, however, it could well be that it is a part of my condition's progression...?

I wish I was a specialist, and that I was really qualified, however, I must reiterate that I am not.

Carole I will reply to you directly after this message, ok?

Best wishes

Steve

[eire]

Hi Kristijo,

I agree with Mary regarding telling your mum about your condition. It could be that your MF will develop very slowly and it really is so very hard to explain this condition. I've had MF for 8 years and am constantly told how well I look!!!!! It's a bewildering illness as we are all so very different even though we have the same illness and I bet nobody you know has ever heard of it!! Most of us agree a good diet, plenty of water and exercise are very important. Good luck with your journey I wish you well.

Pat

[Bridie123]

Hi Kris, So sorry to hear of your diognosis. I'm sure you will find invaluable support and advice here. On the subject of your mum, I'm with Mary. My mum is 96 and knows that I have a rare blood disease but believes that it can be controlled and managed by medication and I will out live it. She seems to be ok with that. I think that is enough. She bought me a excersise bike the other day to help with the fatigue 😅 seriously though, take care of yourself. One day at a time eh. Xx

[KristiJo in reply to Bridie123]

I laughed about the exercise bike. That's just great!

[jane13]

I have MF my mother 90 , I have given toned-down version to her, so she knows there's something wrong but not how serious it is..

[Norman45]

Hi Kris, sorry to hear you've joined the club! I was diagnosed with ET six years ago but believe I had had it for three or four years before being found accidentally after an unplanned operation. Taken Hydroxy first of all but that made me feel really unwell. Moved onto Anagrelide after 18 months then last year had a BMB which showed significant scarring of the bone marrow and a diagnosis of MF.

Luckily the consultant prescribed Ruxolitnib straight away and life has improved perceptibly but still not great. Are you prescribed Ruxolitnib?

Bloods have been stable all this year. I guess we just have to take life as it comes, living for the day without letting problems get you down too much.

Most of us with MPNs look well which belies the shi..y way we feel.

I think you are wise not to tell your aged mum. Why cause worry when there is little she can do about it.

All the best with your treatment. Keep reading the forums and write to them as well- it's good therapy.

[linds]

Hello Kris,

What a blow for you to discover you have this rare and complicated condition. I also have MF diagnosed nearly three years ago when I was 66. I take Ruxolitinib twice daily (not a high dose) and am really not doing badly at all. I do most of the things I always did except on the days when the fatigue beats me. You learn to understand the various funny symptoms like being hot one minute and cold the next, upset tummies and in my case weight gain with the pills. As for trying to explain it to friends, they just know it's an unusual blood condition and that some days I am not quite as bouncy as usual. My family slowly got to comprehend but at my request don't mollycoddle me! The only thing that I truly miss is that I can't walk like I once did. Just run out of puff so much quicker.

I am fortunate to be attached to a specialist clinic at Guy's Hospital in London and trust them to keep me well - which they do. I don't know what stage my MF is at through my choice. It just matters to me that I start each new day feeling positive and being so lucky as to have nothing else wrong with me at all, that I know about anyway.

I try very hard not to dwell on the diagnosis or worry about the future, and anyway I plan to be around at least as long as my parents and they were both 90. I hope hearing from us all helps you to feel you are not alone and if you can get to one of the forums, you will get to meet many happy people of all ages. Keep your mind clear of negatives if you can as it only drags your down. Of course it would help if the sun shone as today is grey and moody and even the birds have stopped singing. Ah well, summer is coming and then you will probably feel too hot!!! Look on the site for tips to stay cool in that case.

All good wishes to you Kris and keep in touch.

Linda x

[KristiJo in reply to linds]

Thank You for your reply. I'm 56 and so far they are only going to observe me through my blood tests. I had a BMB that confirmed MF. I'm going to try not to dwell on the negatives but right now everything has just seemed so gloom and doom. I'm hoping for a good long life ahead of me! Thanks again

[indy22 in reply to KristiJo]

I to have recently been diagnosed with MF and it is hard trying to get to grips with it and family wanting to know everything about it is difficult when I don't know myself ! I haven't started any treatments yet , my next appointment is on the 10th August.

[Mazcd Partner MPNVoice]

Hi Kristijo, welcome to our forum, we all understand how you are feeling about your diagnosis and how difficult it can be to tell your family about it, have a read of the information we have on our website mpnvoice.org.uk, this may help you and your family to understand it all better and just ask any questions, we will all do our very best to answer them for you. Best wishes, Maz

[KristiJo in reply to Mazcd]

Thank You - this website is the best so far that I have seen!

[Mrs_Average]

Hi Kristijo

Sorry to hear about your diagnosis. I too was diagnosed with low risk MF last year, 3 years after initial diagnosis with ET.

I did tell my Mum who is in her mid 70s, but only after I understood the prognosis for me. It was difficult explaining it, but I put it into context, outlining the range and effects of the condition. I took care to explain that nothing dramatic was happening right now, that watchful monitoring now, some drug interventions later, and maybe in time some more options as medical discoveries are made.

I try to remain hopeful and manage my day to day in a balanced way which keeps me going. This week I am challenging myself to get close to 9 a day on the fruit and veg count, and 3 days in I'm feeling pretty good 😁.

Hope things start to 'normalise' for you soon.

Take care

Katherine