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Myelofibrosis

jubilee
Posts: 1
Joined: Jun 2002

I was diagnosed at 32 in 2002,and have had a splenectomy and I am currently in remission.is there anyone else out there that has this rare bone marrow disease? its also has other names one being Agnogenic Myeloid Metaplasia ,another is Idiopathic Myelofibrosis or Primary Myelofibrosis...I would like to meet other with this....

justbychance
Posts: 8
Joined: Nov 2009

jubilee I also had a splenectomy at age 49,, but still take treatment ,, I like to know how are you doing?

hopeful10
Posts: 1
Joined: Aug 2010

My 50 year-old husband was diagnosed this week with myelofibrosis. He feels great and if he hadn't had a routine blood test he wouldn't know he was sick. I found a number of the testimonies here of people that have lived for years with myelofibrosis in a stable holding pattern very encouraging. Are any of you doing anything special beyond tracking with blood tests to keep the disease at bay and from progressing?
Looking forward to hearing your comments.

spalazini
Posts: 1
Joined: Nov 2010

Hello.. My dad was diagnosed with Myelofibrosis in 1988, he was 39 years old. He passed away in 1991. I try to up on what has changed for treatment. There was not much available at that time. I watched my dad go through every symptom of his terrible illness. My mom use to write letters to a few people in the U.S. that were watching someone they loved go through this as well. If you have any questions at all, I do have a great deal of knowledge..

SarahMel
Posts: 1
Joined: Jan 2011

Hi Spalazini, I am 33 in a couple weeks and my doctors believe I have MF. I was diagnosed 6 years ago with Polycythemia vera and have been told I have been an interesting case. My platelets at one point were up and over 3000 for example. My platelets have dropped to 300 which yes is normal, but not for someone with PV, my spleen and liver are enlarged so he is saying that I have probably progressed to MF, which we knew was a possibility, I just didnt think this soon. I had a CT scan done to check all kinds of thins including my bones. I was told that I have spots on my bones... no idea what that means, but its scaring the crap out of me. I was hoping I could get more information that what I am finding online... I understand its scarring of the bones, and I understand why. I just would like to know what to expect.... can anyone help?

Charnised
Posts: 1
Joined: Jan 2011

Oh my goodness, I am scared to death. I was diagnosed with idiopathic myelofibrosis at age 18. I am currently 25. My platelet count was one million, and I was infused with iron which dropped it down to 600-700 thousand. I've had that steady number for about four years. Now my count is 145 thousand, down from 200 something thousand last month. I'm scared to death as this looks like scared to death as this looks like progression. Most doctors can't believe that I even have this horrible disease because of my age. They all say I'm the youngest they've ever seen with MF. I have an enlarged spleen and anemia. My red and white count is low but normal for MF an my lmy liver is normal. If anyone knows anything bout this condition to better assist, please email me, charnised@yahoo.com. I have a five year old, seven-month old, and I am five months pregnant with my third. I need to be here for my children's lives

nsm56
Posts: 1
Joined: Jan 2011

SarahMel: The best place to find out what to expect is to talk with your own physician. If he/she is not that knowledgeable in PV and MF then seek out someone who is. You can find them where they are doing much of the research (Mayo - AZ, FL and Minn., Fred Hutchinson, Columbia Presbyterian in NYC, Dana Farber in Boston and others.) Everyone presents with a different set of symptoms, what you experience may be different than some others. There are much we share in common but I found hearing all the possibilities was too overwhelming. I had PV for about 34 years before I was diagnosed with MF. Some with MF progress very slowly and are stable for years. I progressed very rapidly and underwent a stem cell transplant just about one year ago. It all is very scary, don't give up on hope. There are many brilliant minds working on treatments and cures. Good Luck, gather knowledge and be active in your treatment plan.

Ellen021011
Posts: 1
Joined: Feb 2011

Hi my mom had myelofibrosis she just pased on the 10th. but she did a test study in orlando which is very successful. which i hope that it can help alot of people. do you know if it runs in the family? all i have read it has not said that it does but a brother and sister were in the test study

DuckerHunter
Posts: 2
Joined: Apr 2011

Hello ya'll,

I'm killing a little time at work and ran across this site.

I'm 53 and I was diagnosed last September (2010) after a routine physical showed elevated platets. I also have type 4 hyperlipodemia (triglycerides) so I get blood work routinely. For the first time in about 10 years my triglycerides were normal..but my platelets were 504 and climbing, and I a little blood in my stool. Talk about a mixed result. :(

After going to a hematologist, having a bone marrow test, and visiting the Mayo, I had confirmation of MF. I am very fortunate that I've never had symptoms and I've already had a remission with my plates initially climbing to 579 and steadily dropping to 378. My RBC & WBC are normal too. I am blessed in this regard and feel the anxiety that many of you have.

I plan to visit this site often, and will respond to emails. I know that I won't necessarily be healthy from MF forever...likely not to be truthful. Until then I want to be here for those who are suffering and anxious...and to see what is in store for me.

God Bless all of you
Chauncey

PS Interesting side note: While researching MF I found out it's more "prevelant" in those of Jewish descent. This led to to research my family tree...found out I'm genetically of Jewish descent through the maternal side. Weird huh?

Annie R.
Posts: 2
Joined: Aug 2011

Hi, it's a relief to have just found this site. So much seems to be happening at once. I would have loved to write to everyone here, so please feel free to answer from everyone and anyone.

My husband was diagnosed with MF in 2004, no symptoms, JAK neg, just enlarged spleen and liver. Everything was relatively fine, but we were upset that there was no help until symptoms start to show.

That's where we are now.

Past few months, his blood tests are showing declining hemoglobin, and also what they call, cell blasts, which are currently at 3, last month they were 2. We were told when it hits at 30%, it will become something much more serious, leukemia.

Also told that transplant is very dangerous, just as last ditch efforts, and there's no match for him within the family.

Our specialist in Rochester, New York wants us to go to Mayo Clinic where there are clinical trials going on, the earliest appointment was for September 27th, so off we go.

They refused to answer any questions however over the phone (or email), just show up, where the specialist will speak to us for one hour, and then decide what to do.

Minnesota is far from us, especially when the seasons change and snows come, so it's plane only.

Anyway, we're scared. He's very tired, and has many naps during the day, however, he's still working around the house, a huge deal. Planting, gardening, mowing, taking great care of the house and also, me.

Does anyone have any advice or experiences with the Mayo Clinic, and with this stage of MF? Anything you have to say would be helpful, and you know I mean anything!

We just don't want this to continue to decline, especially with those blast cells, that's the scary part.

Oh yes, forget to mention, he's lost and still losing weight, although he eats every 2 hours, and eats a lot. He started at 256, now down to 193. He's started to feel a little bony, although his tummy is large because of the spleen size (double what it should be).

Please help with any advice, experiences you may have. Thanks so much.

doloresandderek's picture
doloresandderek
Posts: 6
Joined: May 2013

Does your husband have any hip and leg pain?  My husband was diagnosed a year and a half ago with no symtoms other than tired and night sweats.  Know he naps every 2 hours and his spleen is quite large and his stomach.  The pain just started and I am so scared, would appreciate anything you can tell me.  I just joined this site and would really like to talk to someone. Thank you

doloresandderek's picture
doloresandderek
Posts: 6
Joined: May 2013

My husband has Myelfribosis and in the last couple of month his hip and legs are hurting quite badly.  He can't walk very far, he was diagnosed with this disease a year ago.  Please tell me what the stages are?  Need to know, very worried.  Thank you

Freejack6466's picture
Freejack6466
Posts: 2
Joined: Sep 2013

My husband was diagnosed on sept 4th of 2012 with myelofibrosis and lost his battle 8 weeks and 4 days later on Nov 9th, 2012. God be with you through your time of need....

shireen
Posts: 1
Joined: Jun 2011

I have had a high platelet count for more than 25 years now. It has been around 1.2 million. I never took Hydrea or any other medication to reduce the platelets. Just recently I was diagnosed with Myeolofibrosis, Im not opting for radiation treatment etc. Im seeing a Naturopath and trying to follow a strict natural/ herbal/diet. The basis for all the food I cook at home is ginger/garlic/turmeric/fenugreek/onion. Everything has to be freshly cooked everyday. No wheat, white rice, white sugar. Take Quinoa , pure cane sugar, Stevia, Agave.
Also take ' Astragulus' pills which is derived from a Chinese plant.

home-town-ed
Posts: 2
Joined: Jan 2013

Hi, I am a 48 year old male diagnosed with myelofibrosis April 2012. All of my blood counts are so low that I was receiving a transfusion of at least two units every other week. Now it is every week. I need a bone marrow transplant, but my insurance won't cover it. Would like to find others with similar low blood, to compare numbers and see how you cope? Hope to hear soon.  This is my first attempt anywhere to contact others.       Ed.

auntbe
Posts: 3
Joined: Dec 2012

I am so sorry Ed that you are having problems with your insurance company. It is awful on top of what else you must be dealing with. I would suggest you contact the insurance commissioner in your state, the governors office and your doctor. Often it is how they write the evaluation for predetermination of benefits. Don't give up. If they still don't provide coverage and a BMT is what you need consider setting up a web sight and ask for donations. I went to the Mayo Clinic those doctors are at the forefront of research perhaps there is some other treatment that you can take. I was diagnosed last year too. I wish you the best. you can email me for support if you wish. drbe172@hotmail.com

Dalt
Posts: 3
Joined: May 2011

I was diagnosed with advanced MF in December 2009. I heavily dosed on oral vitamin c and selenium along with bi carb and received an all clear on February 01 2010 (six weeks). Others have followed what I did and received an all clear in a short period. It seems vitamin c/selenium and bi carb doesn't cure the disease, but it certainly stops it in its tracks and allows MF sufferers to live a normal live. It is three years now since my all clear. I still take vitamin c/selenium and bi carb every day as I don't want MF to return. I can be contacted at intouch9 (at) bigpond.net.au as I have a lot of research and can supply the type of vitamin c and selenium I used.

doloresandderek's picture
doloresandderek
Posts: 6
Joined: May 2013

I have left 3 different blogs on the board and no one has answered.  So I thought I would reply to others blog.  I am interested to hear more about your cocktail of vitamins.  What are the doses for them, the doctors is doing nothing for my husband and he sleeps all time and has pain in his hip and  legs.  I hope you answer me.  Thank you

 

Dalt
Posts: 3
Joined: May 2011

I was diagnosed with advanced MF in December 2009. I heavily dosed on oral vitamin c and selenium along with bi carb and received an all clear on February 01 2010 (six weeks). Others have followed what I did and received an all clear in a short period. It seems vitamin c/selenium and bi carb doesn't cure the disease, but it certainly stops it in its tracks and allows MF sufferers to live a normal live. It is three years now since my all clear. I still take vitamin c/selenium and bi carb every day as I don't want MF to return. I can be contacted at intouch9 (at) bigpond.net.au as I have a lot of research and can supply the type of vitamin c and selenium I used.

doloresandderek's picture
doloresandderek
Posts: 6
Joined: May 2013

My husbands doctor told us there is nothing anyone can do to stop this cancer.  There is no hope of a cure or any treatment.  I am so upset, I would like to hear what vitamins to buy and ask for.  He was diagnosed 1 1/2 years ago with no symptoms other than tired and night sweats.  Know in the last month has hip and leg pain, is this normal for Myelofibrosis??   Please talk with me, I am so scared!!!

 

doloresandderek's picture
doloresandderek
Posts: 6
Joined: May 2013

I really need to talk to someone who knows about this type of  cancer.  My husband has just started getting really bad hip and leg pain.  Is this part of the desease?  He was diagnosed Jan. of last year, with no symptoms other than tired and night sweats.

Freejack6466's picture
Freejack6466
Posts: 2
Joined: Sep 2013

Worsens in larger joints, large flat bones, longer to shorter bones.  Unless he gets gout first, it usually starts with the large toes.  Gout is caused from increased Uric Acid.  

howard9811
Posts: 2
Joined: Nov 2013

My wife is only 29.. i am 30.. we hav a little girl hus only 2 years old... i am afraid of what might happen she is diagnose with these disease. I am from philippines by the way. Were not rich and onlu relying on her medical medical insurance. Please anyone could give me herbal advvice that she could take that can be bought anywhere.. your reply would be appreciated. Lets all help each other. She is jack 2 positive and having a milion bloodcounts. Shr started taking hydroxrea and it looks like its helping a lot..can you guys suggest of a diet or herbal medicine we could use. Your reply would be appreciated for the rest of my life.

howard9811
Posts: 2
Joined: Nov 2013

I am referring to my wife to make it clear.. any help or suggestion to fight this? I am so scared for her and worried like i cant eat everyday... but i have to stay srong for our daughter... please help.

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