I am waiting to hear if anyone responds to this because I too would like to hear of medications and trials currently going on.

PMF is serious
I was diagnosed with PMF 6 months ago. I am now taking Pegasys to hopefully reverse or stabilize it. After 10 weeks, I feel better, but my spleen is still large. You may want to visit an expert in PMF at one of the Mayo clinics.

good luck and best wishes
Dave
(To see Dave's original post go to category medical UPDATES and see comments)

Response to Dave re: Pegaysis
Hi Dave,
Thank you so much for commenting as this site is new and I am hoping people like you will find it and share. I hope you don't mind if I ask you a few quesions.
Do you have a JAK2 mutation?
Do you know what your WBC count was and now is.
And what were you feeling before Pegaysis, that is now feeling better?
And one more. What side effect did you feel from Pegaysis.
Thank you so much.
I wish you well.
Bijou

This is a copy of what was posted on a Mayo Clinic website today.

suth rnki sses Today at 4:18 pm 0 Likes
I have mds… leukocytosis and have been taking ydroxyurea since sept.of 2003 to keep my white count under control so i don't get full blown leukemia.I started out on 2 grams a day and now have worked my way down to 1000 mgs a day. it seems to be working well for me so far. God bless you and i hope whatever treatment you receive works for you.
reply

Bijou Today at 4:31 pm 0 Likes
Thank you I am looking into many things at the moment, perhaps a clinical trial for one of INCYTE's new JAK2 inhibitors. I am so glad your treatment is working for you.
Could you please do me a favor as I am trying to get my site interactive with responses like yours, as they re valuable to me and to others. Would you mind cutting and pasting your response ontowww.healingcreatively.com I would be so appreciative. I wish you well. Again, thank you, we are considering hydroxyurea for the high white count and enlarged spleen.

This sent to me from E. whose husband had a BMT for Primary Myelofibrosis a year and a half ago. * note the majority of patients do well after a BMT but I have asked on this site for people to share all experiences.

myelofibrosis said on 1.5 years after the BMT
July 18, 2011 at 2:44 am
In response to myelofibrosis on July 14, 2011 at 11:57 pm:


Hi bijou,

I`ve checked out your web-site – nice job! I am very sorry about you being diagnosed with PMF. What can I say – I really wish you good luck with everything. Main thing – I hope that you got a very strong family and friends` network because I personally believe that this is #1 in this situation – yes, the doctors are also very important, but mental health and endurance and good nerves are even more important. Please do NOT be discouraged by my latest post. Yes, my husband is not doing good. BUT I have seen enough patients coming for check-ups after a BMT and they were looking great, and some of them never had any major complications and their BMT went smoothly so please do not be scared by my blog, that was not my intention at all. I am only describing what is happening with my husband. I am being frank because it is what it is and I cannot lie about how it all sucks but a BMT is not a cookie cutter and everyone is going through it differently. Has your doctor mentioned any BMT options or is he going to try the drugs?

Anyways, God bless you and please be strong. Your blog is a great way how to talk to people and also, it`s a self-therapy. It helps me as a caregiver but it can definitely help you even more as a patient.

Good luck with everything.

E.

Thank you so much for responding and sharing. I am sorry for your husband's struggles. It is wonderful he has your strong and loving support. Your website inspired me.
I will know more after the 8th when I see the bone marrow specialist as to the course of action. I remain optomistic, and am living each day to the fullest. If I do decide down the line to go the course of the bone marrow transplant, I hope it will be alright to contact you. I pray his healing and his resistance to the virus's become stornger each day.
with hope.
Bijou

Hi All!
My name is Jessica, and first I'd like to say how much I admire everyones strength as they go through their difficult times in handling this condition. I currently work for a Research Firm based in Sacramento Ca and we have been assigned a new project focusing on Myelofibrosis. I personally had never heard of this condition until I was assigned to this project but now after doing research on the condition I definately admire the courage and strength that it takes to undergo all the different treatments that come along with the condition. The Firm that I work for would like to speak to any and all patients who have been diagnosed with MF to come be apart of a paid focus group April 24th as we would love to hear your opinions in regards to certain treatments and medications. There are absolutely no sales involved in this study as we are strickly looking for your most open and honest opinions only. The groups will last approximately an hour and all patients will be paid an incentive of $150.00. We are holding this group in Dallas TX. So if you're interested or know of anyone that would like to participate with us on this day please use the following contact info below.
Myelofibrosis Patients:
Opinion Research Study

Date: Tuesday, April 24, 2012
Time: 60 minutes
Incentive: $150
We are looking for patients who reside near Dallas, TX to participate in an in-person interview. The research study will take place on Tuesday, April 24, 2012 and take approximately 60 minutes of your time.If you are interested, please contact Elliott Benson Research at 916.471.5716 and reference Project STAR or ask for Jessica to see if you qualify to participate in this research. Please feel free to pass this invitation along to anyone you know who may qualify for this important research study.
Thank you so much for taking the time in reading my post.
Thanks,
Jessica, EB