Hello Bunty1952

I'm sorry to hear that you've recently been diagnosed with Myelofibrosis. I hope that you feel well supported by the health professionals involved in your care. 

We have quite a number of posts where people have mentioned living with this diagnosis. You can read through some of these by using the search function at the top of the page. I can also see that Wilma2013 , Landys3 and Iain555 are all members who have posted about myelofibrosis within the past few months, so hopefully you will be able to connect with others soon.  You might also like to have a look at the Blood Cancer UK website. 

If it would be helpful to chat with one of our team of nurses, you're most welcome to give them a call. I know they will be happy to listen and offer any advice, information, and support they can. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

I hope this helps Bunty1952. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Bunty

im more than happy to chat 

MF is a rollercoaster of emotions and symptoms plus learning a new language and abbreviations!

it’s confusing and difficult to explain to others 

I have been through a huge amount in the past 18 months so if you want an honest and frank chat about anything MF based please give me a shout

take care

iain

Hi Bunty we’re in this together message me anytime 

take care 

regards Carol 

Hi Iain

would be good to chat to someone else about this 

disease 

regards Carol 

Hi,

I'm out the other side of treatment, if you want someone to ask about the procedure. 

Hi I’ve had a bone marrow biopsy last august and that’s how I found out that after 15 years with polychemia Jak 2 Vera that I’ve progressed to MF I’m also a liver transplant as well due to this blood disorder so I’m only on limited treatment because of a full transplant 

I’m started on Ruxolitinib end November playing havoc with my stomach taking Loperamide daily 

how have you been and what treatments are you on if you don’t mind me asking 

Blimey, you've had it worse than me. I'm leading a pretty normal life by comparison, I got GvHD which is in my liver but I wouldn't know it as I've no symptoms. 

As for meds. I'm on Ruxolitinib, Tacrolimus, Acyclovir, and Co-trimoxazole.

I've been on steroids and other meds but over the year since my stem cell transplant they've slowly been decreased.

I’m on the advarf taco for transplant and aspirin omperazole lorsatan Riveroban blood thinner and cancer drug as well it’s quite hard to deal with how long you been on Ruxolitinib? Has it helped you? I’m having trouble with my stomach taking Loperamide daily to try and control it but it’s early days for me they’re trying to get my levels down it’s hard work though 

I was on Omeprazole at one stage but that's one that got dropped,I've been fine on Ruxolitinib, it is hard work getting the levels right,everyone of us is different. I had 2 doses of chemo before transplant,I sailed through those without any problems,then another dose after. Unfortunately, I got an infection which was grim,but at least I was in the right place.