Myelofibrosis

Thank you, I will ask the doctor about procrit Our insurance will also cover this medication. he seems to be doing fine at work he does work long hours , so that could be why he is tired. also I know it is a part of this. nothing is really bothering him at this point except his spleen being inlarged. Pete

My father was diagnosed in December 2005. Fatigue is a big issue. We have seemed to conquer this with natural juicing, carrots, apple and parsley, glyconutrients and vitamin B supplements. He too suffers with spleenomegaly a common occurance with this diease as the organs are trying to store and "make" the marrow the bones cannot. I would suggest that you really research Revlamid. The recent study going on at my hospital had large numbers of drop outs due to the side effects. There comes a point in time where you stirve for quality of life not quantity. Not all cures come from a pharmacy. No doctor is "all knowing". They put their pants on one leg at a time just like us. Do your homework. Research, research, research. I have spent countless hours in a medical and regular library. Find a physcian that will talk on your level and see you as a person not another office visit. Support and attitude go a along way with any terminal dieaase. Keep you chin up. Celebrate every point that gets better in the lab work. Juicing also helps get required nutrients and seems to be easier to tolerate since at times he doesn't feel like eating due to the presssure of the spleen on the stomach. Wishing you the best!

Dear Radiationruth:

What is your father's age and how was his condition diagnosed? Has his spleen been enlarged for a long period of time? I'm also curious why you don't mention procrit injections to fight fatigue over the short term and a bone marrow transplant as a long term solution. Do you have any blood count data you can share?

Upbeat.

Upbeat:

Love your name! Dad was diagnosed December 2005 thru a routine blood test for a routine physical. His regular doctor then sent him to a hematologist who immediatley did a bone marrow biopsy. It was ONLY AFTER the biopsy that my parents sent out an e-mail informing us (their kids) what had taken place. To make a LONG story short; Dad wanted me with him when he learned the results of his biopsy. I am the only one of their 5 children who work in health care. He was hoping, I think, that I would have answers. I was VERY disappointed with the attitude and the dismissive behavior of his original hematologist, and used all my contacts to secure a wonderful, caring, and knowledgable hematologist. Again, not liking the diagnoses myself, I again used all my contacts to procure "visiting hours" at the residents library in our hospital and password codes to journals, research and study logs. All this information can be found in any good library or if you have alot of time and energy some you can find on the net. Dad just turned 70 in December 2005. I have worked in health care for nearly 17 years and if it's one thing I KNOW for a FACT - ONLY AN IDIOT WILL NOT QUESTION THEIR PHYSICIAN. Get the facts! NOT everything that heals is from the pharmacy. I'm not saying that there are NO treatments available, they seem to be making progress each day. HOWEVER... When you factor AGE and diease progression...I think it's a personal choice. The current Revalmid studies are coming back negative. High drop out numbers due to side effects. Get the reports at NCI. This is not a "wonder" drug. Unless of course after getting the information on the study and you read the 4 pages of side effects do you "wonder" why they think this is a good thing? Sorry, on my soap box again.
Dad's spleen has been enlarged for some time. It is palpable and visual. The CT scan shows a large mass (hemopetiesis) in the spleen. This happens when there is no bone marrow in the bones and the organs are trying to "make" marrow. Eventually, this will cross over into the liver and enlarge it also. Should this happen, he will experience jaundice, portal hypertension and be prone to clotting. (strokes, embolisms). He will also have increased joint pain in the shoulders and upper legs and the bone scars down on it self. They tell us there's no cure. They tell us since he's 70 BMT will not be considered. Still, we fight. No one lives forever, and my family is comfortable with that. But until it's time to "turn off the lights and go home", we'll be in the trenches fighting, researching and trying. Our labs have been holding steady for the last 2 months. RBC 5.34 and WBC 1.23. He's not up to a 26K marathon, but then he says, he wasn't before either! Still doing weekly labs. I'm not sure if it will help you, but here's what I look for.
If HCT is INCREASED or normal = INCREASED chance of clots.
Increase in Leukocyte Alkaline Phosphate falls as diease worsens.
Increase in serum uric acid as diease worsens
Increase in Indirect bilirubin = RBC destruction.
Increase in LDH = inefective cell destruction
If Platelets fall below 20,000m3, and HGB is below 7.0/g and HCT below 21% transfusions may be necessary.
Everytime we draw a steady lab we're greatful and the party's on, light the grill, put the ice cream maker in the sink. Taking it one day at a time. Living for QUALITY not quantity. So far we've beat the odds already! His original "all knowing md" only gave him 2- 3 months. I LOVE to PROVE them wrong. KEEP THAT TEMPO GOING UPBEAT! I'm with ya. Radiationruth

dear

I need more information about myelofibrosis, and i want know treatment,research, and more information

best regards

dedy

I myself am looking for info on this disease as I was recently diagnosed. All I can really find out on my own is that it's a debilitating disease with no cure.I have yet to have any kind of medication for mine, my oncologist wants to try the ole lets wait and see what happens approach which I'm not happy with.

Hi, I'm sorry to hear of your diagnosis. I'm in my mid 40's and was diagnosed 2 years ago with Myelofibrosis. I don't know what stage you are in, but there are medications to control your plateletes and help with your red blood cells and can lead to a higher quality of life for the duration. Have you done much research on the internet for options? There are a few drug studies that might interest you.

What is hardest for me is that for now I have chosen to not let folks outside of my family and very close trusted friends know of my condition, I take a lot of drugs, but have few outward symptoms.

Please write back, I will share what information I can. Be hopefull, be strong.

Hi, I'm sorry to hear of your diagnosis. I'm in my mid 40's and was diagnosed 2 years ago with Myelofibrosis.

I don't know what stage you are in, but the old wait and see is a very good thing. But, it sounds like you want to take some action. Have you had a bone marrow biopsy for your diagnosis? What do your CBC's show? Taking medications with all the side effects, in my opinion, should be put off as long as possible. What did your doc say about asprin?

What is hardest for me is that for now I have chosen to not let folks outside of my family and very close trusted friends know of my condition, I take a lot of drugs, but have few outward symptoms.

Please write back, I will share what information I can. Be hopefull, be strong.

Dear Folks,

Sorry about the multiple postings, I'm learning this website.

It was good for me to read the past posts, there seems to be be lots of correct and good information.

Enjoy!

HI, nice to hear from you. My doctor is of the ole let's monitor your labs for the time being and see what happens. According to him I am in the early stages and this is the best option for me. I was diagnosed with rheumatoid arthritis about 3 yrs. ago and that is when my anemia raised red flags with the doctors, altho I have been anemic for most of my life it just didnt register with my family doctor that there might be a cause. My RA doctor finally sent me to an oncologist who said all you need is iron tablets, take these for 6 weeks come back and see me. That didnt even budge my count. I was then given Procrit shots for 5 weeks and after the last one my count was up to normal finally, so he said again, come back in 6 weeks for a final checkup and I will release you. Upon returning my count had fallen back to where it was so I had my bone marrow biopsy and that's when I was diagnosed with myelofibrosis. I think he feels like since I am so young, compared to when people are normally diagnosed that I have plenty of time before I need to start worrying about this.
According to all the research I can find on the computer that is not the case at all. I tried asking him about the bone marrow transplant but was more or less told to quit reading on the computer that it was full of nonsense.