Myelofibrosis

[CeeCee123]

Hi all, I was diagnosed with MF last year. I had ET for 30 years before that. I was never given anything for ET. I am now on a wait and watch for MF. Is anyone else waiting and watching ?

[darcey]

Hi Cee Cee

Sorry to hear that you have changed from ET to MF , I have also had ET for 14 years and was on hydroxycarbamide for ten years.

I was diagnosed with MF two years ago .

So now have a few questions for you had a bone marrow aspirate done,yet, also has your spleen or liver increased in size are you getting any bone pain or cramps.

Also do you still just still take the aspirin .

A lots of questions I am sorry.

[CeeCee123 in reply to darcey]

Hi Darcy, also sorry to hear about your MF transformation. I had a BMB last year which confirmed MF. Three years before that a BMB suggested preMF. That BMB was done because of an enlarged spleen, not liver though. My main issue at this time is anemia. I do get occasional bone pain. Did you have high platelets or did the hydroxy control it. Also what is your degree of MF ?

[darcey in reply to CeeCee123]

Hydrox helped to controlled my platelets over the last few years it's now between 376 -349 .

I have been on rux for sixteen months it's been very successful in reducing my symptoms.. I have had enlarged liver & spleen and a lot of bone pain. Also Very bad night sweats..

I think the Rux caused anemia so I now have to have blood transfusions. As my redblood count was 8.7

[CeeCee123 in reply to darcey]

Its good that the Rux is helping you. It just sucks that it lowers the hemoglobin. We need the miracle drug !!

[Shelly1960]

Yes hun I am I am unclassified and have mf and my white cells so immune system affected

[CeeCee123 in reply to Shelly1960]

Unclassified but still MF ? Anything other symptoms or just white count ?

[Mirribell]

I was also diagnosed a year ago after ET for 15 years. I started Ruxolitinib 6 months ago and am feeling reasonably well. So I waited and watched for 6 months. At that point my spleen was very enlarged and night sweats were frequent. Maybe you are not at this stage yet?

Best wishes

[CeeCee123 in reply to Mirribell]

Has the Ruxo helped with spleen size and symptoms? Do you have any side effects ?

[Mirribell in reply to CeeCee123]

Yes, definitely helped reduce spleen size. My side effects are anaemia and weight gain

[CeeCee123 in reply to Mirribell]

I am glad you're getting some relief. I hope it continues to help until something better comes along.

[trevic]

Don't watch and wait too long. Some doctors who don't understand MF will do that forever! Tell your doctors every symptom, they are important markers.

[CeeCee123 in reply to trevic]

Even though my doctor is an MPN specialist I still worry about wait and watch. At this point I feel relatively well so I can't complain. Thanks

[daibare72]

Hello!!! I was fully diagnosed 2 years ago with Primary Myelofibrosis and according to MRI scans I probably have had it for at least 5 years. My JAK2 is confirmed as mutated, my Spleen Ultrasound has my Spleen size as 15cm which is quite large and my bone marrow biopsy is showing the fibrosis. I'm in the low risk (wait & worry) stage and my fabulous hematologist is telling me that things will probably start ramping up in 4-5 years! No other symptoms yet such as loss of appetite, bone pain, night sweats, itching, fatigue, etc. I am fortunate to live near a major research/academic hospital here in Mequon, Wisconsin USA (my roots take me back to Newcastle upon Tyne though!).

Support groups are great, Andrew Schorr's MPN group & website are fantastic and the info found at incyte.com (makers of Ruxolitinib) is a great way to begin the journey of gathering information and empowering yourself with knowledge. MF is very tolerable and survivable.

Curious as to your age and where you hail from? The very best to you...

[CeeCee123 in reply to daibare72]

I'm originally from The Bronx. Now I'm about an hour away from NYC. I'm seeing Dr. Mascarenhas at Mt.Sinia. His is an MPN specialist. I'm currently 61 but rapidly approaching 62, lol. At this point my spleen has gotten larger, hemoglobin lower. I will find out next month if it's time for some kind of treatment.

[daibare72 in reply to CeeCee123]

What a small world! The Bronx eh! Well me too...2084 Grand Avenue just up the hill from Burnside Avenue. I still miss the sounds of the city in the summertime; laying in bed and listening to the El humming along over on Grand Concourse Blvd! I would think that you're in great hands oover at Mount Sinai. There is a new trial out there from BioPharma in Italy called Pacritinib. I know that Froedtert here in Milwaukee in participating; I'm wondering if Sinai is or if you qualify for that clinical trial. I think that there's another new trial somewhere besides Pacritinib, but it's not receiving much press.

[Islander47 in reply to daibare72]

I believe that the Pacritinib trial is for folks that have had prior treatment with Jakafil. Also interested in this due to low platelet numbers.

[katiewalsh in reply to daibare72]

Hi. I live in Glendale wi and see Dr. Atallah at Froedert. I'd love to talk to you some time. Which Doc is yours? Katie

[daibare72 in reply to katiewalsh]

Dr. Karen Sue Carlson. I'll be visiting the bone marrow transplant guys sometime in the upcoming year. Do you have MF? Do you attend the MPN Support Group that meets every three months?

[katiewalsh in reply to daibare72]

Hi. I live in Glendale, WI and see Dr Atallah at Froedert. I'm somewhat uncertain (due to 2 different diagnosis) if I'm ET, JAK pos or Primary Myelofibrosis. Would love to talk to you sometime. Who's your hematologist? Katie

[CeeCee123 in reply to daibare72]

Wow, yes it is a small world. I do feel pretty good about my doctor. I've read though that it's best to start treating MF in the early stage because it just keeps progressing. I guess there is so much they still have to learn about this disease. I have heard of Pacritinib, I will talk to my doctor about it. Have you been on any trials ?

[daibare72 in reply to CeeCee123]

Good Morning CeeCee123...

I'm curious as to where you read about treating Primary MF early on??? The very first thing that my Hematologist told me and from I've read on Incyte's website (makers of Ruxolitinib) is that there is presently no cure for MF, you only "manage the symptoms". And since MF can manifest itself differently from person to person, the symptoms cannot be addressed until they raise their ugly heads! Your condition is assessed using the DIPPS scoring system. You are scored 1 point where your age, overall health, additional illnesses and each symptom of MF receive a point. Then, based on your score, a roadmap towards treatment is formulated. A stem cell transplant is ultimately considered but not before all other avenues are exhausted or if your MF becomes life threatening as in the case where your blast levels push you into AML. There is a fellow in my support group you had just that happen to him, having Primary MF and then ending up with Acute Myeloid Leukemia and about 3 weeks left to live. He is now doing wonderful, but takes 19 medications every morning!

I am 61 years old and to answer your question, not on any medication or eligible for any trials right now. I take baby aspirin which any person over age 50 should take anyway! I have stopped worrying about my condition and I have joined our area MPN support group which has helped do away with all of my fears. You're in a great city with fantastic academic hospitals and specialists; you're going to do fantastic. This is such a slow moving disease that (I don't know your age) G_d Bless us, we should live out our lives doing all of the things that we've always done.

Talk to you soon,

Dave

[eire in reply to daibare72]

Hi Dave, came across this post accidentally!!! I've had MF for 8 years but the disease has suddenly progressed v quickly with my spleen just getting bigger and bigger!!!! I'm on rux and panobinistat but my haem feels I'm no longer benefiting from the drugs and is considering taking me off the pan but to still take the rux. I'm not a candidate for SCT and options are looking very limited at the moment. I was interested in the gent in your support group who takes lots of different meds but is doing well. I live in Ireland and have an excellent haem who attended the Ash conference in San Diego in Oct. America seems to have more options available and I was wondering if you could advise what drugs that fellow in your support group takes?? My haem is always open to my searches or any info I get online. So amazing to have a support group like that sharing information and discussing symptoms. Hope you don't mind me asking you these questions???

Pat

[Bigmann1 in reply to CeeCee123]

Hi ceecee123

I’m also from nyc. Going to see a dr at my Sinai march 1. What do you think of that hospital ? Are you still on jakafi?

[Islander47]

Have had MF for over 25yrs & still on "watch & wait". However, will be going on Jakafi in the next several months. Spleen has been increasing in size again. Nothing wrong with watch & wait! Good luck with your journey!

[CeeCee123 in reply to Islander47]

Wow, over 25 years ? Did you have any other MPN before MF ? What other symptoms did you have ?

[Islander47 in reply to CeeCee123]

In 1991 I was first DX with MDS, but later confirmed it was PMF all along. Over the years have had continued fatigue, bone pain, fevers, and blood clots, along with increase of spleen size. Over the years, blood counts have been all over the place. I have been matched for SCT, but plan on using available drugs before considering. My case has been very slow moving, & I'm in a race between my age, drug development and progression of the illness. All of us have different journey!

[CeeCee123 in reply to Islander47]

I wouldn't qualify for an SCT. Just hoping they come up with some kind of drug soon. You are right we all have different journeys. This is definitely an unpredictable disease. Wish you well !!

[Islander47 in reply to CeeCee123]

You have a great Doctor and he'll tell you when to start Jakifil. Why would you not qualify for an SCT, which right now is only cure? My Dr. is at Memorial Sloan Kettering.

[babbittybumble]

Hello Our son was diagnosed almost nine years ago now with PMF his only medication is Aspirin and he is fit and well. Its amazing to hear that Iislander47 has kept so well, Take care

[CeeCee123 in reply to babbittybumble]

I am glad he is doing well, may he continue to do so.

[Islander47 in reply to CeeCee123]

Thank you! This illness effects us all differently & each has our only timing of progression. I do have the CALR+ mutation that might be the key to my longevity.

[MFBMT2011]

I was 57 when diagnosed with Primary MF in the UK nearly six years ago and was IR2 on the DIPSS scoring system. Without the complication of the new drugs, which help with symptoms, I went to SCT quite quickly and am approaching five years out. Watch and wait is okay but MF can move at variable speeds so keep your options open and be prepared to move forward if you need to. I do buddy work for MPDVoice and am happy to talk to anyone to give a patient's perspective on SCT. Although UK based I have many American buddies and have free calls to the USA. In addition to this site another good source of knowledge is the free online magazine MPNForum which also has a 'private' Facebook page with 400+ members with various MPNs to share with and ask questions.

[audreyk53]

I think I may be progressing from et to mf. I have had et for 8 years. I have been controlled the past few years with aspirin and 500 mg hydrea every other day. On the last visit to my hem. my platelets had risen to 610 which they have not been for 4 years and my iron level is low. I have been getting iron infusions, I have had 3 and have 2 more to go. He is thinking this may reverse the numbers. Now I am wondering if I am progressing.

Thanks,

Audrey