My husband met with the transplant team yesterday.
They went through pros and cons of a transplant.
The only option offered to him for his post PVMF was ruxlitnib. We wanted to know about Pegasus and interferon but these two weren't an option.
So for now he's going to take ruxlitnib for as long as he can then consider a transplant when it's needed.
We asked about having other mutated genes apart from the jak 2 but they didn't have the answers so we are no further forward.
Tracey
Tracey
Have you asked about the Myeloid Panel Test? In the USA they test for other mutations when approaching transplant stage since can affect timing. If any ‘bad’ mutations they will be swayed to transplant earlier than normal. My very limited understanding is that only a minority develop these adverse mutations.
Determining when to transplant must be a nightmare. The prognosis improves the earlier you transplant (or rather vice versa!) yet transplant too soon and you miss out on maybe years of quality life. Plus chance of new drugs and improving STC techniques.
Do you know what his DIPPS score is? I assume he is Int 1? Goes Low Risk, Int 1, Int 2 or High Risk.
There are ongoing trials of Combo therapy (Pegasys and Ruxo together) which appear promising. If you are interested, Google search or check some of my previous posts. Might be worth following.
Best wishes Paul
Hi Paul,
Honestly we've have no information at all no score sheet on if his progression would progress to AML.
We only know he's jak 2 positive got no other info at all.
Seems like England isn't a far forward as America.
Today my husband said he's had no exhaustion and had a good day.
He's waiting for his consultant to sort out his ruxlitnib. I'm pushing to get it this week.
It's hard as he works away so fitting in hospital appointments isn't easy.
Tracey
Hey Tracey... 
As Paul has mentioned already... You can ask to be tested for other mutations. Not sure how all of that works in the UK, however, I had it done here is sweltering Sydney, (heatwave at the moment). 
Interesting decision by your medical team, however, they do have all of the necessary data concerning your husband's MPN, one must assume... and my understanding is that Ruxolitinib, (aka Jakafi), is not handed out too easily...
Nevertheless, I do think it helps to undertake a Panel Test for other mutations...
Best wishes
Steve
(Sydney)
We will ask his hemotologist on march 4 appointment to test for other mutations .
If you don't ask you don't get 😉
Tracey
I’ve had PV for 2 years and reading your conversation now makes me wonder if all PV patients will come to the stage of transplant 😞 or pos PV something else 😱. Anyone please clarify?
Don’t know stats but whenever I have heard this mentioned it is a small percentage. Ask your specialist and they should be more accurate.
Tracey - Had my SCT nearly eight years ago and very happy to help with information on that. Rux’ is good with symptoms but not a cure and more importantly, like all drugs, does not work on everyone. The first ever buddy I supported went on and off it in several weeks but is now seven years out from SCT. So I would suggest that you follow through your research on SCT in case it becomes an imperative.
Can’t comment on above suggestions as they need to be referred to or driven by a medical expert not us patients who read technical papers. Happy to help with anything to do with SCT.
Chris - non Jedi version.
Thanks Chris,
My husband is still waiting for the ruxlitnib. Seems to be a longer process to get it!!
It's been okayed from the transplant team so we just waiting for a call to say it's in ready to collect.
Wonder if anyone else has experienced difficulty getting ruxlitnib ?
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