Myelofibrosis

Dalt

I was diagnosed with advanced

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.

auntbe

Archie said:

My story is somewhat the
My story is somewhat the same as the above story except I have been on Jakafi tablets for about six months. I was diagnosed with MF in april of 2012.
Symptoms was reduced Hemo, kidney disease, gout, enlarged Spleen,increased Platelets, weight gain and skin irritation. The Spleen has reduced slightly after six months of Jakafi. At the time of initiating the Jakafi, I was told that my Hemo might further lower, which it has. I am now taking blood transfusions about every 40 days and on one occasion I spent some time in the hospital as my Hemo dropped unexpectedly to 7.0 I am scheduled to come off of Jakafi in two weeks as there is no positive results other than spleen reduction.
I am interested in all the information about vitamin C therepy I have been reading about.
I would like to hear from those that are using Vit C. I am 75 yrs old and need all the information I can gather.
Thanks

I went to the Mayo Clinic

I would suggest you check with the Mayo Clinic in Rochester Minn  for trials and new treatments. I was there in January  2013 and given great hope with an extensive evaluation and treatment options. I say Dr. Al-Kali and Dr. Teffric. Some options listed were thalodomind, lenalidomide and inteferon. After the evaluation I was given a clear explanation about which treatment was best for me. I felt better knowing the doctors were knoowledgeable about Mylefibrosis and had been studying it for so long. They are willing to work with your doctors at home. I am 56 and was diasnosed in November 2013 after 30 years of thrombocytosis. Best wihes to eveyone

auntbe

home-town-ed said:

myelofibrosis

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.

Appeal the insurance company decision

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

doloresandderek

Myelofibrosis..Can you help??

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.

doloresandderek

Dalt said:

I was diagnosed with advanced

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.

Would love to talk to you

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

Annie R. said:

Mayo Clinic help
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.

Bone Pain

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

Dalt said:

I was diagnosed with advanced

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.

Husband had Myelofribrosis

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

 

doloresandderek

spalazini said:

Hello.. My dad was
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..

Need some info

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

doloresandderek said:

Need some info

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

How and where are you?

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....

Freejack6466

doloresandderek said:

Myelofibrosis..Can you help??

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.

Bone pain...

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

help

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

howard9811 said:

help

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.

I am referring to my wife to

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.

Archie

dgenton said:

Myelofirosis

Hello, I was diagnosed August 2011 with same thing except my platelets were about 900. I was on Hydrea for over a year which did lower the platelets but did not reduce the spleen size. In October they changed me to new drug - Jakafi 20mg. It has done wonders in three months. Spleen has been reduced and platelets are normal. WBC and RBC are still a little below normal but are improving each month. Good Luck to you.

Looking for news

I was diagnosed on april 2012 with MF. I tried all the usual drugs they like to give you orally or intravenous, all of no help except Jackafi` which reduced my spleen size. 

The down side to Jackafi is that it lowered my Hemoglobin numbers to the point at which I required a blood transfusion about every five weeks.  I soon got off the Jackafi and am taking nothing.  There is no doctor in my area that knows anything about the disease and at 77 yrs old I have decided to ride it out as it comes.

In addition to this disease I have stage 3 Kidney disease, I am prone to blood clots and suffer from enlarged Spleen, Hemolytic Anemia and Heart disease.

I scan the the comments just to see if there is any thing new on the subject.

Dalt

howard9811 said:

I am referring to my wife to

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.

Read my older post. I have been in remission for nearly five years now. 

vickiroz

Beloved49 said:

Hi, I am Beloved49. I was just diagnosed with Myelofibrosis last Friday. They do not know how long I have. I am 56 years old. What awaits me? I do not know what to do.

vicki

my husband was told he has it last jan,he has lost weight allready ,but doctor says he could live for 15, 20 years and he told me to stop reading what i hear on the internet after i tld him it says you will not live for more then 2 or 3 years,we do not know when this will get bad or when he will need meds,i just pray they would find a cure,i am now looking up in the vitamin c thats suppose to help,so i am making him take it anyways,cant hurt hey? keep me posted on any new news and how you are doing

vickiroz

suesue555 said:

Myelofibrosis
Still Here and Stavan:
If you go to the Discussion Boards, Long term effective, Myelofibrosis
there are few people post their comment and new medicine.........
I am so glad Still here is still here, that is what I like to know too,
My chinese herbal medicine cancer specialist has been given me chinese medicine
that will help my spleen keeps normal, so far, I have not have found any doctor treated
Myeloffibrosis yet, my blood specialist is only given me the same medicine for
my high blood planate, which I have been taking for last 19 years.............
Regards
suesue

whats the herb called u take/

whats the herb called u take/ and what is it suppose to do? i alos heard vit c is heplful

vickiroz

Hope for all said:

Stem Cell Transplants
My mother had myelofibrosis and MDS at the same time, she was 64 and had a de novo form of MF and MDS...meaning, a secondary type of Myleofibrosis/MDS since they were caused by Chemotherapy and Radiation, a rare side effect if you will. This meant that she wouldn't get the same or lasting benefits from treatments or transfusions,plus her age and of course there was the fact that she had two types of Myelodysplastic disorders. So I wanted to make sure I was clear about the range of extreme difficulty in treating her before I said anything else.

She eventually had to find a second oncologist that had experience with Myelofibrosis and when she did that, he helped her qualify for a stem cell transplant- even at her age and with the other factors that seemed to be stacked against her. Her brother was a match to be a donor and I think that is why she was approved. Of course this was considered to be a clinical trial, as all stem cell transplants may still be...but I just wanted to let those who are diagnosed a little later in life know that a transplant isn't always entirely out of the question because of age. If you do not have a Specialist that can help you do that, then it never hurts to get a second opinion. Especially if you have a sibling...and even better: a sibling donor that is the opposite sex from the patient.

This condition can be described as a series of ups and downs. Time can go by with no incident and sometimes there can be sudden changes. There is no rhyme or reason to progression, it's difficult to "stage" and I have seen first hand at how frustrating this is, when my mom wanted more than "watch and wait".

I hope I am not out of line for posting this, since I don't have a total success story to share,but this rare diagnosis made an impact on my family and I hope for the best, for anyone experiencing this. I was a care giver for a long time and I never found another family caregiver for this particular illness on a message board, so thats another reason why I wanted to come back to this site. Also, everyone was wrong about estimating a window of "time" for her and "medium ranges" on the web were not even close. Probably out of date and based on a time when the only treatment options were transfusions.

so what are u saying about

so what are u saying about the time frames are wrong,they live longer? our doc said dont believe evrything u read on internet

lawnmower511

Freejack6466 said:

Bone pain...

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.  

melofibrisos bone pain

It  try to walk as much as I can also tke alpruernol to help to prevevt grout. It works well. When it gets cold and damp out it get really bad  I find just keeping warm helps

Sandym107

Son has myelofibrosis 33 y/o

He was diagnosed 9/14, had transplant 1/9 but did not work. He is dependent on blood transfusions usually weekly. I am beside myself as a mother not knowing how long he may have since you can't get transfusions forever. Im scared and worried. How are you doing with yours?

Sandym107

Dalt said:

Read my older post. I have been in remission for nearly five years now. 

Son with myelofibrosis

Will you please talk to me about this cancer my son has. He had transplant but it did not work. He is dependent on transfusions due to low RBC's amd platelets. I don't know how much longer he can go like this and am very scared and worried. Please help! He is 33 with 2 kids.