Hi, my name is Mandy, i was diagnosed JAK2 positive in January and told 2 weeks ago i had PV and last week was told i had secondary Myelofibrosis i think it is stage 1.I am not sure what all this means for me, ive seen a consultant who is going to start me on Ruxolitinib.
I have an enlarged spleen and liver and had many admissions into hospital last year with urinary sepsis and fast forming kidney stones.
I have read so many different things on google and really dont know what to expect,
Any advise that anyone could give me on what to expect or what questions i should be asking would be much appreciated, thank you
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Lallybroch1
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Hello and welcome to the forum. This is a great place to find information and support.
Many people with MF find ruxolitinib to be an effective and tolerable treatment approach. It is known for superior symptom control, reducing splenomegaly, and has recently been shown to have potential to reduce the JAK2 allele burden. Others who have been on RUX can give you the best input on using this medication.
The good news is that treatment option for MF are expanding. One of the newer JAK-inhibitors, momelotinib, was recently approved for MF treatment. There are other drugs in development that look to be very hopeful. A lot of progress has been made in MPN treatment in the last 10 years. As you read some of the more alarming information provided by Dr. Google, bear in mind that much of what you read predates the more advanced treatment we no have.
There are better places to find information than seeing whatever Google pulls up. Here are a few of the better sources, starting with MPN Voice. many of these sites have links to webinars that are worth watching.
My PV has recently progressed to MF I've been on ruxolitinib since 2019 My starting dose was 10mg twice a day. Since being told at Christmas that I had progressed to MF my dose has been increased to 15mg twice a day. As with most meds, the list of side effects is long, however the chances of having them is low. I was slightly dizzy after my first dose that's all. Since then, absolutely no side effects whatsoever. Good luck and welcome to the forum.
Welcome to the forum. I am so happy to have found this forum too, the people here, truly care and want to help. I don't have the experience that others have, but I know people will reach out to support you.
One thing I have found useful, is to write down any questions or queries, to take to my appointments, as I invariably forget something when I'm there. I also scribble down info, whilst there too.
Blood cancer UK have specialist nurses you can contact, for support too. I called to discuss treatments and, although they couldn't choose for me, obviously, I did feel so much better, after our chat. You can email or call for support.
Hi, i have such a terrible memory i have set up a binder with all my paperwork and have bought a notebook to write down questions and to remind me what is said at each appointment. Thank you and i hope all goes well for you too
I think it's part of the condition but I've just hit 60 so senior moments too. You sound very organised. I keep everything in a box, always planning to organise it 😅 xx I hope all goes well 🥰
I am post ET MF. I am on Rux, when I saw the list of side effects I was really worried, but, so far no side effects except constipation! I take 25mg twice a day.
You’ll get a lot of information and support from this forum. Dr Google is very scary and mostly very wrong! If you’re not seeing an MPN expert ask to see one.
I see your user name is Lallybroch - are you an Outlander fan? I am!
Hi, yes i am an Outlander fan, read the books first but love the series as well, wish i had a Jamie to look after me while i process whats happening 🤔🥰
Rux is an easy drug to take and most get no sides at all, and many feel much better on it, it has a tendancy to put weight on for some but that can be controlled by eating a bit better and if poss exercising a little more.
One thing to consider is to record the consultations on your phone, it’s amazing what you notice more if you play it back a few times, check with the doc but most are ok with it.
As others have said, welcome to this forum. It has been so helpful for me, and I wish I’d had the benefit of the support and knowledge here many years ago. I, too, have PV. It hasn’t transformed to MF, but the doctor took some time to consider whether it had after my last bone marrow biopsy.
The good news is that there are several new drugs approved or being studied for these blood disorders, especially MF. Don’t freak out too much over all the possible side effects. It’s possible, if not probable, that you won’t experience them.
The most important thing to do is get yourself an MPN specialist — someone who knows about MF backwards and forwards. That makes a huge difference in terms of your treatment and confidence. You’ll learn a lot here and arm yourself with questions.
hello Mandy, welcome to our forum. I can see that you have had some excellent advice already from the lovely people on this forum, so all I will say is that we are all here for you and happy to offer support and advice. Best wishes, Maz (also a fellow Outlander fan)
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