Now 51 and lived with an ET diagnosis since the age of 28. Recently had bone marrow extraction to confirm if I have MF! Find out on 15th Oct

[Colin1967]

Looks like I may have MF and following a spout of googling I am now worried I’m not going to make my 60s!

[Rachelthepotter]

Dear Colin

Estimates of life expectancy are inexact, to say the least, but its worth finding out your DIPSS+ score. Or , indeed, MIPSS. Or the latest variant. Also your degree of fibrosis

If you have your diagnosis if MF confirmed.

Also worth checking your mutation status. Which mutations,, and your allele burden. ( and the order you acquired them in makes a difference, too). If this is all alphabet soup , then its worth getting your head round it.

All these things may make a difference to which drugs might help you, and what yr expectancy might be.

I was 67 when I was diagnosed with MF (JAK 2 , TET2, Inter 2 on DIPSS+ level 3 fibrosis, ) and I’m now just past 70 and leading an reasonably active life. But I tire easily and need to allow for that. I dislike the muddle headedness that comes with the package for me as well.

Any how, this is a useful site to find help and information. There is a Living with MPNs day in November, in London, coming up. Good place to get the latest info.

Regards

Rachel

[Colin1967 in reply to Rachelthepotter]

Thanks Rachel, really helpful as you have pointed me in the right direction to ask the right questions when I see my consultant.

[Aneliv9 in reply to Rachelthepotter]

Do you still have the chance for SCT? What is the dug regime for you? Also what is the plan in case ruxolitinib stops working? Has your hemo mention anything about upcoming new drugs? What is his opinion?

[MFBMT2011]

Diagnosed with primary Myelofibrosis (MF) age 57. Categorised as Intermediate Risk Two (IR2 ) using the DIPSS assessment mentioned by Rachel, and level 4 bone marrow scarring. Came from nowhere as bloods normal 17 months previously. First Haem’ offered no solution but referral to a Myelofibrosis specialist led me down the path of a stem cell transplant (SCT) at age 58 in London, UK. Now 66 and okay.

Since I was diagnosed there have been more drugs available that can slow, although not cure, Myelofibrosis, and increase the treatment options.

If you get the diagnosis confirmed you will be on a different path and will need to consider the options with your doctors. Don’t write yourself off. 😀

Chris

[Aneliv9 in reply to MFBMT2011]

What are these drugs that can slow down progression?

[MFBMT2011 in reply to Aneliv9]

I am not really up on specific drugs as I went the SCT route. Ruxolitinib (aka Jakafi) has been around for about eight years and is a significant one that works well for many, tackling many of the symptoms.

Different drugs work for different people and I am sure others will chip in.

I can help anyone going the SCT route.

Chris

[Aneliv9 in reply to MFBMT2011]

Did you lose all your hair with hemotherapy?

[MFBMT2011 in reply to Aneliv9]

Didn’t have much on my head anyway. Lost everything on my body except moustache, nasal hair and eyebrows. I was like an oven ready chicken. But it all came back.

Chris

[Aneliv9 in reply to MFBMT2011]

I see.. in how long did you have your hair back??

[MFBMT2011 in reply to Aneliv9]

Took several weeks before it started but we are all different. My wife also lost hers because of chemo for breast cancer and got a great NHS wig and two excellent ones from China.

[Aneliv9 in reply to MFBMT2011]

Did your wife had taxenes that may cause permanent alopecia? Has her hair back?? Sorry for those questions.. Just try to understand some things around chemo and hair loss

[MFBMT2011 in reply to Aneliv9]

No. And no alopecia. Hair initially came back very curly and then went back to normal, ie straight.

[Colin1967 in reply to MFBMT2011]

Thanks Chris

[katiewalsh]

Hi Colin. I’m afraid I can’t be of any help as Rachel and Chris were. But I wanted to welcome you if you’re brand new here and let you know that there are “buddies” available if you decide you want more one on one support. Our wonderful administrator, Mazcd, can arrange that for you. There’s another forum type thing for MPN patients run by MPN Foundation which is in the U.S. There are many on there with MF who have had it for a long time. It actually seems to have more folks with MF than the other two MPNS. They’re very knowledgeable & helpful in case you want to take a look. Take care. Katie

[Colin1967 in reply to katiewalsh]

Thanks Katie, will take a look at the MPN Foundation

[Aneliv9]

Has any hemo offer you the chance for SCT (in case that you have MF)??? Also you must know that post ET/PV MF ,is a little bit different from PMF and more indolent

[Colin1967 in reply to Aneliv9]

Hi, haven’t yet had the opportunity to talk treatment options. Will know more on the 15th

[Aneliv9 in reply to Colin1967]

And how your doctor suspected MF? What changed ?

[Cja1956]

Hi, Colin, we are in a similar situation. I was diagnosed with ET at age 52, eleven years ago. This past year I developed anemia with low red blood cell counts and high platelets. My hematologist tried to improve my numbers, but wasn’t able to. So I found an mpn specialist, had a bmb and lots of lab work and she said I had prefibrotic MF and told me I’ll probably need a SCT in 2-5 years. I found out that there are new drugs being developed and I’m hopeful. She also started me on EPO injections. I was already taking jakafi and hydroxy for years which I’m continuing.

Please don’t despair. Continue to learn everything you can. We all can relate, in one way or another, to what you are going through and we are here for you.

Cindy

[Colin1967 in reply to Cja1956]

Thank you Cindy. Really helpful to understand people’s journeys and to find out more about treatment options and developments 👍🏻

[Leighcox85]

Hi Colin iam sorry you are going through this the waiting is always the hardest part I was diagnosed with pmf at 24 years old iam now 37 38 in January so that will be 14 years I have had mf I have many complications so sct is dangerous for me so it will be my last option I was on rux for many years but it stopped working I have very low platelets so a lot of treatments are unfortunately ruled out but I weaned rux and iam now on fedratinib drugs have improved our prognosis greatly and in some control symptoms so you can still lead a good quality of life I know when you google it can be very overwhelming but a lot of info is pre medication make yourself a list of questions you want to ask when you visit your doctor and hopefully you will get the answers you need it sometimes they can give information to take home to read and you should get a cns that you can call if there’s anything you need to know I just want reassure you that you can still lead a good life and if we can help in anyway just ask anytime good luck and welcome to the group x