Pre-fibrotic MF

[Kriddle01]

So I finally seen my Hemo, and the results show I've got Pre-fibrotic MF. Im JAK2 positive. So he would like to put me on ruxolitinib on my next visit. Approval is needed due to my age? I'm 36. My current symptoms are fevers, sweats, burning feet, blurred vision, no appetite, underweight sitting at 47kg, enlarged spleen, bone pain. I'm starting to research this diagnosis and trying to get my head around it all. Anyone in similar situation. Thanks xx

[Leighcox85]

Hiya Hun I was just like you I was told in 2009 I had pre mf i was 24 I progressed quite quickly to full mf and iam at the final dose of rux looking to try some trials now but sct is my goal we are very rare iam told to have this so young if you want someone to talk to you please message me anytime I know all this must be frightening it was for me to but I found ways to live my life and you will to iam also 36 now my best advice to you is find a specialist in mpn iam with st guys in London and research good luck Hun x

[Kriddle01 in reply to Leighcox85]

Hi Leigh, thankyou for your response. I am feeling a little overwhelmed, but from reading yours and other posts, I have confidence that Rux will relieve some of my worrisome symptoms. I have not felt myself for over 10yrs, and always put it down to my bronchiectasis. I'm thankful to have some answers. But with such a wait between visits with my Hemo, it can be frustrating waiting for answers...I have so many questions, I have so much to learn, and I know they can't predict my future, but I would love to know what I'm in for...how long? Can I just coast on Rux for like 20yrs? Or will pre-MF progress rapidly? I know MF has a poorer prognosis...But with the lack of studies, how long for some one in their 30s? Sooo grateful to speak with someone in my shoes xx kind regards, Krystal

[Leighcox85 in reply to Kriddle01]

I completely understand how you feel I was exactly the same I had pre mf from 2009 it progressed to full mf January 2017 and started rux then I had already tried Pegasus and hydroxy but both didn’t really do much rux did my spleen reduced and I felt a lot better I could eat for the first time in years I did put on weight and I have wear sun cream religiously as we are prone to skin cancers we are all very different and I don’t think anyone can predict our futures but there’s always hope and we have our babies to push us through because we are younger I do feel it’s harder as we have a longer way go but never give up and if you ever want a chat or anything at all iam more than happy help iam hoping to start sct very soon and iam sure one day your doctors will discuss this with you to x

[tracey13 in reply to Kriddle01]

My husband was diagnosed with PV at the age of 41 he's 49 now x

[socrates_8]

Hey Kriddle01...

My name is Steve, and I am Post ET / MF, CALR+, ASXL1+ & I also have acquired Von Willebrands Syndrome (VWS)...

My Platelets have always been horrendously high, and I have had a few Transient Ischemic Attacks (TIAs). These are also known as 'Minor brain strokes'

Most of the symptoms you mention, I have had, which also included bleeding from the Portal Vein, Gums, and nosebleeds...

... However, I am NOT trying to frighten you at all... Just the opposite, hopefully, like me and many others here, you too will find that taking Ruxlolitinib (Jakavi) helps to control most if not all of your symptoms, & especially the Spleen reduction & returning to normal size... So please do not be afraid of taking it because it really helped me get my life back, in many ways...

Yes, it's a tough break to be diagnosed so young, but I could've & should've been myself too...

If only the medical fraternity in Australia was more aware of these rare blood cancers...

MPNs are largely Chronic illnesses, and so many of us might not progress as rapidly as one might have first thought, but sadly... some do too... For example, I am guessing that I have had my MPN for well over 20+ years... and I am still here...

By the way, if you looking for MPN Specialists in Australia, I might be able to assist you further, as I am based in Sydney, & we have started our own MPN Patient's FORUM called MATES:

mpn-mate.com/forum/viewforu...

MPNs What Are They?

mpn-mate.com/mpns-what-are-...

This page and others on the Site hold an abundance of information concerning MPNs...

Yes, it is and can be all quite overwhelming at first... But, after a while hopefully things can & do settle down a tad...

Happy to chat anytime, and we do have Cafe Catchups in Australia too if you're interested...

Stay in touch...

Best wishes

Steve

[Kriddle01 in reply to socrates_8]

Hi Steve, thank you for the reassurance. It is alot to take in, and alot of learning. But if this Rux can alleviate some of these troublesome symptoms I'm in! If I can reduce this spleen and gain some energy...I'll be laughing 😊. I'm based in Tasmania Australia. My hemo is quite young and doesn't provide much information, other then he will speak with his colleagues. But then 2mths between visits....sucks big time. So a support group will probably be my best source information. Thank you again. I'm a mum of a 2yr &11 yr old with special needs. Would like to be around for as long as I can. So many questions.

[hunter5582 in reply to Kriddle01]

Socrates_8 and the other Aussie MPNers can give you better feedback about MPN expert docs in Australia. There are not a lot, but there are some. Getting a second opinion would be a very good idea. Most hematologists do not have the KSAs to provide optimal treatment for MPNs due to their rarity. Here is a list mpnforum.com/list-hem./ .

As others have mentioned Jakafi is a rather logical step at this point. The other thing to discuss would be PEGlyated Interferon. Not to say it a better choice, just that it is worth reviewing the risk/benefit profile of each of your choices.

I would recommend connecting with the MPN-Mates forum for Down-Under specific resources and support.

Hope all goes well.

[dancingelephant]

Do sorry to hear that you have been diagnosed with MF. I was diagnosed last August and am taking rux. Within a week my immediate reaction was relief from fatigue and my spleen rapidly reduced. I really wasn't given any alternative, so to be reasonably well, and able to carry on with my usual routines it has worked for me.

I am considerably older than you, but it probably doesn't make a difference when it comes to treatment.

Please keep in touch, and let us know how you are getting on.

Good Luck, Bonnie

[tracey13 in reply to dancingelephant]

Ruxolitanib reduced my husbands spleen he feels so much better now since starting rux. X

[BlushNoisette]

Hi , I have been taking Rux for nearly 6 years. I am JAK 2 positive. I was diagnosed with PV in 2006. I will be 70 later this year. In 2015 I applied to participate in the Majic Study and as I met the criteria I was accepted into the study and after lots of tests I began treatment. I was so grateful to get to try Rux because I was very poorly with severe fatigue, very painful pruritis, swollen and painful joints, episodes of cellulitis and enlarged spleen. My bone marrow was somewhat fibrotic.

Rux started to make a difference to my symptoms within days. And then as time went on my condition really improved. So Rux gave me back my life.

I hope my experience will give you confidence and I send you very best wishes. Lyn

[tracey13]

Sorry to here about your diagnosis.

My husband has primary MF he's now 49 he's been on ruxolitanib 2 years gone February and he's feeling absolutely fine. It's made such a difference to his life.

Don't be worried about starting ruxolitanib it's been a game changer for my husband.

He was absolutely necessary n his knees no energy absolutely exhausted before he started ruxolitanib.

He has a good life now .

Tracey