Choices.

[Petsgalore]

My name is Tania - I was diagnosed with myelofibrosis 8 1/2 years ago at the age of 50. I have been on ruxolitinib for the last 3 1/2 years and am now in a position where it is no longer working as it was and I need to decide where to go from here. I have been offered places on trials which are taking place currently as well as current chemo drugs available for patients in my situation. How do I know what to do ???????

[saltmarsh]

I am truly sorry for your predicament. I've been on HU for over three years and dread the day it starts to lose its efficacy. I can only offer my support and hope that others on this forum can provide some input. Best wishes going forward. I am fairly certain there will be a solution for you.

[Petsgalore in reply to saltmarsh]

Thankyou so much for your encouragement and support - very much appreciated.

[Inca]

Hi Pets Galore, There are new drugs available for those of us with M F. My consultant mentioned them to me last march.I have have been on Rux 4 or 5 yrs since Hydrea stopped working for me when still with P V.I am a great deal,older than you & live & treated in France.I just hope Rux lasts me for the fairly short time I probably have left!Imam sure your consultant will suggest another med so try not to worry,just makes things worse,keep positive.Very Best to you 😊

[lizzziep]

Momeletinib is also available on NHS, but obviously you need to discuss what is best for you with your haematologist.

[Tortina]

hello

I would discuss this with your MPN consultant in some detail asap. I presume you see one ?

Also is there a possibility that you could have a stem cell transplant ? Is that an option ?

You need to fully understand your options going forward before you can make a decision .

I wish you all the best going forwards .

Tortina

[hunter5582]

Sorry to hear ruxolitinib is losing efficacy.

There are a total of four different JAK inhibitors used to treat MF

Ruxolitinib

Fedratinib

Pacritinib - MF with thrombocytopenia

Momelotinib - MF with anemia

There are also some promising drugs in clinical trials that are worth considering. In addition, there are other drugs in use, including the interferons in some cases.

best to discuss your case directly with a MPN Specialist to explore all of your options.

[Bullace]

Hello, I'm 71 with Primary MF. I was on Ruxolitinib for about 10 years when it became less effective and I'm now on Fedratinib but that too is not as effective as it was. I'm not eligible for STC and Momelotinib is not yet available locally in Scotland. Perhaps you need to talk to your Haematologist in detail about what is best for you? It sounds as if they've just given you options without any sort of detail. Could you discuss it with one of the specialist nurses, perhaps? I'm so sorry you have been left with no real information to make a decision. Hilary

[Arami in reply to Bullace]

Hello B, I am looking for an input from people in their 70 s with primary MF. Like I described in an earlier post I started Rux a month ago after 2 years of Hydrea and the numbers went in the wrong direction. Platelets very low, WBC high and heading towards anemia. Doctor said it is normal when starting treatment with Rux and that the numbers will revert after a couple of months, but I am really scared. Please let me know if you experienced anything like this at the beginning of your treatment. Or anyone who reads this post that has primary MF. Thank you all in advance!

[Meatloaf9]

Hello, sorry the Rux has stopped working for you. It sounds to me like you need to see a true MPN specialist to discuss where you go from here. It sounds like your choices may be a different medication, a clinical trial, or possibly a stem cell transplant. Only you and your Doc can decide where to go from here. I have heard many good things about Dr. Harrison who I think is in London (I am in US). I would do whatever it takes to get to a MPN Specialist. Best to you going forward, please let us know how you do.