Myelofibrosis

Hi again Naugus so the journey continues. A number of folks have been on Ruxolitinib (Jakavi®) so let’s see them pick up on your post.

Many thanks Highlander, I amkean  to hear from others as to how they have tolerated Jakafi.

Naugus

Try putting Ruxolitinib and/or Jakavi into the search tool near the top, select 'Anywhere' and see if there are any old posts and as always you can hit reply to see of the members are still using the site. 

Hi Naugus , so sorry to hear that your watch and wait has come to a horrible end. I hope your treatment is successful.  

I have MDS, (Myelodysplasia) and I have been on watch and wait since March 2015. Although my bloods have been poor at times, I've had weekly treatment for almost all of that time and been on tenterhooks for years as no doubt you were too. Fingers crossed for you Naugus.

Tvman 

Thank you Tvman, appreciate hearing from you. Be sure I will not give up without a fight.

Naugus

Hello Tvman,

Thankfully I do not know how “horrible” the end will be and have decided to focus on getting into a clinical trial. It has been over ten years since Ruxolitinib was approved and there are new treatments being tested and used in combination with Ruxolitinib as Anemia is one of my problems not helped by Ruxolitinib. At 81 I am not eligible for a SCT but hopefully will be accepted in a trial. I was told that age was less important than good health, which other than this incurable disease I believe I have. 

I would welcome hearing from anyone in a trial or having been in one as to how they were treated.

thanks for reading,

Naugus

Hi Naugus 

I have been on Ruxolitinib for nearly a year and it's been fantastic.

It shrunk my spleen from 23cm to 15cm, helped with night sweats and itching.

My spleen shrunk within the first week.

I have the ASXL1 mutation and am going forward with SCT on 15th March.

Hello Ammadores,

Good to hear from you again. My mutations are Jak2, MPL, SRSF2. I dont know what they signify but anemia appears to be my worse enemy.

Best wishes and all the luck in the world for your SCT, stay in touch.

Naugus