myelofibrosis

[Juliet46]

Hello I was wondering if anyone’s ET had progressed to myelofibrosis, what were the symptoms and was it diagnosed with a BMB?

Thankyou

[Swede]

Hi, yes it was a BMB that reviled it. No difference in symptoms really.

[DJK12]

I lost a lot of weight so was sent for a BMB which confirmed it.

[Arthandiwe]

Hi, yes, I had a BMB as my haematologist was concerned that I had a lot of symptoms for someone with ET (CalR). I was having headaches, was fatigued, felt like things were crawling on my skin, mild numbness in extremities and sometimes palpitations. I was diagnosed with pre fibrotic/early stage MF from ET.

[UKZA]

I was diagnosed with ET in 2018 and after a BMB in Jan 2023 , MF. As there was no comparison BMB, it states that I could have always had MF. I would advocate for an earlier BMB, especially in the UK, as this got me onto Interferon, which seems to have stabilised my bloods(on the low end ) and is doing a far better job than hydroxy did. I was sent for a BMB due to symptoms and the fact that HU was not working any more.

[Sivasi]

Hi Juliet46I've recently progressed from ET to MF. I was feeling very tired all the time and platelets were going up in spite of being on Pegasys. I had another BMB which confirmed MF and was put on Jakavi straightaway. The effect is wonderful and I feel really well. Not sure how long that will last though, as I'm intermediate risk, but still, enjoying life right now!

[lizzziep]

I was diagnosed with ET about 13 years ago, I didn’t see a doctor face to face for over 3 years from 2020, just phone calls from specialist nurse, then when I finally did see one he noticed I’d been getting more and more anaemic so ordered a BMB and NSG which showed MF grade 2 and high risk mutations. I’m currently on Jakafi, my platelets are in normal levels, as are most other blood counts, except still anaemic so also on twice weekly EPO injections to help with that. It was only the anaemia that pointed to MF, otherwise ok. I do get tired but age could contribute to that!

[ainslie]

counts coming down for no reason can be an indication then most docs would do a BMB to confirm

[Cja1956]

I got diagnosed with ET in 2008. In 2016, my hemoglobin started dropping and my platelets started to increase. My hematologist put me on jakafi but my numbers barely changed. My legs became very weak , brain fog increased, as well as my fatigue. I finally found an mpn specialist and she diagnosed me with intermediate 1 MF throughout a BMB and extensive bloodwork in 2019. I’ve now progressed to intermediate 2/ high risk.

[Juliet46 in reply to Cja1956]

Sorry to hear that

[richs361]

hi yes, mine has.. still no symptoms. Was diagnosed through BMB

[Richinspirit]

Hello Juliet46 - my 81 year old husband was diagnosed last week. His consultant said he did not need a BMB as all the symptoms were 'cast iron'. This was mainly due to his enlarged spleen. The consultant will be watching him carefully for the next few months and so far has not prescribed Jakavi - as she told him he doesn't need it YET!

[Juliet46 in reply to Richinspirit]

Hello, Thankyou for your reply. I have today been diagnosed with myelofibrosis. All the test results haven’t come back yet so I’m staying on 1000mg of hydroxycarbamide at the moment.

I’m a bit apprehensive

[Juliet46]

Thankyou to everyone who replied to my post of 1 month ago. My haemo has today confirmed that my ET has progressed to myelofibrosis. All my test results aren’t back yet so I’m staying on 1000mg of hydroxycarbamide at the moment.

I’m a bit apprehensive

[Richinspirit]

Best wishes Juliet46 - you seem to be at the same stage as my husband xx

[Juliet46 in reply to Richinspirit]

Thankyou