The Jackpot at last. Jakavi approved

[hackett]

I have been approved to commence on Jakavi which I hope is good news and a relief. I am just waiting for my latest blood results before starting. Platelets should come in at somewhere around 500. My dilemma is that my Haem has asked me to continue my current dose of anagrelide (4mg per day) indefinitively and commence Jakavi (15mg per day). It all seems so counter intuitive.. If the Jakavi works my platelet count will be down to nothing in no time. MY QUESTION IS : IS THERE ANYONE ELSE OUT THERE WHO IS ON BOTH ANAGRELIDE AND JAKAVI?? My apologies for an illwritten and rushed question. My internet is too patchy for a considered question. Regards Jan

[Paul42]

Hi

Thats good news.

Im only on Rux (Jakavi) and can tell you that my platelets have come down from around 400-450 (i have pv) to 200

Im no expert but I would have thought you would be best on just one treatment, otherwise how do they know which one is working?

Paul

[lawhill]

Hi Jan, when I began ruxolitinib 3 years ago, my specialist gradually transferred me over from hydroxyurea to the Jakavi product. I guess they are being cautious. Happy for you 😊 It's wonderful news. Jeanette

[hackett in reply to lawhill]

Thank you for your reply. May I ask over what sort of period the gradual tranasfer took place? I presume there was a downward titration of the hydroxy during the change over. I also acknowledge that a former treating haem has replied and suggested that I should not be too concerned. I guess my anxiety is simply based on previous bad experiences. regards Jan

[lawhill]

Hi Jan, from memory I think it took about a month. It was three years ago now so it's a bit hazy. I do remember that it took around six months or more before I felt the benefits of ruxolitinib. Since then I've had to learn to look after my health due to infections caused by a compromised immune system. Patience and a positive approach have worked for me. It's so good that you have been given the opportunity to commence ruxolitinib. I've had blood cancer since the age of 36 and now, at 60, I am very grateful for the advances in medicine / science. I have advanced Myelofibrosis. Stick with it, we all respond in our way / time. Good luck. Jeanette

[hackett in reply to lawhill]

Hi Jeanette. Thank you for your quick response. It is reassuring. I also wrote to my former haem in Sydney and he also responded well. Part of the difficulty is that I`ve had a pretty bad 18 months and have lost the courage and confidence I previously had. I have PV which I`ve known of since 2005ish, but probably had already in 1996. We nominally live in Canberra but this year have overwintered in Brisbane because of my pruritus. The downside of being here is that I am remote from all of my usual (medical) support systems. I am assuming you are somewhere in Australia on the basis of that fellow near me function on Health unlocked.

Thank you and all the best Jan

[lawhill]

Hi Jan, you have had tough time by the sounds of it and I understand how one's confidence can fall away with self doubt etc. I've had Myelofibrosis for about 9 years, with the previous 14 years with PV also. 2012 was a pivotal year for me...too ill to have a transplant and losing an organ. BUT, ruxolitinib worked for me despite being at the lowest point physically and mentally. Hang in there and visualise a better life. Difficult, I know, but it's the time when we need to work the hardest. Thinking of you and wishing you the very best x Jeanette

[lawhill]

And, yes Jan, I am in Perth, western Australia. I did spend two years in Brisbane at the leukaemia village when my health headed south, but that was because we were on Norfolk island at the time.....it was the closest city....