A step forward in the treatment of myelofibrosis
Milo-fibrosis is a chronic disorder of the blood and bone marrow caused when too many or too few blood cells are produced in the body, the result? scarring of the bone marrow, which effects the ability to make enough blood cells and causes a number of symptoms. Fortunately though, this condition is rare, however, for the people that have milo-fibrosis, the impact of this condition can be severe. Here to discuss this, this morning is doctor steven fein, hematologist oncologist at baptist health south florida, welcome doctor. Good morning to you. Good morning danielle. We did talk about the fact that it's rare.
It's also very complex. Let's get more specific about it, can you explain it to us? myelofibrosis danielle is a special rare condition where you have scarring within the bone marrow, it's a part of the family of conditions called myeloproliferative disorders, where you have the bone marrow making too many cells, either too many red cells or too many white blood cells, or in the case of myelofibrosis it's too much scarring. That problem causes other things within the body like enlarge spleen and discomfort within the bones, some people have generalized pain within their bones and itching sometimes and it causes people to get real tired and have a very difficult life.
So let me ask you, for people who are dealing with this condition, do they know what to look for? i know you talked about some of the symptoms, but what are some of the more typical symptoms? is it the same for everybody? it's not. Every patient has a different version of this. Some patients get swelling within their belly, especially pain and swelling the left side where the spleen sits.
Other patients get real tired because they have inemia, low blood counts and some patients come in with fever and have pain within their bones. It can be real uncomfortable and when they first show up, it's usually a mystery, that the doctors and hematologists like myself has to kind of figure out. Do a little research and kind of rely on your expertise to figure out what it is. We do. So what causes it, and who is affected by myelofibrosis? it's mostly people in their sixties who get diagnosed, sometimes younger people and it's men and woman equally and it comes with out good reason.
We don't know the cause, it just happens to people. It's not exactly a cancer, but it's kind of related to blood cancers and it can be just as debilitating and as deadly as things that are considered cancer. So let me ask you then, when you do have a patient who comes into you and who may be experiencing some symptoms they really have no idea what it is? that's right danielle. It's something that is always a mystery.
The doctor has to think about what could cause their pain, their discomfort, their swelling, thier low blood counts. Usually a hematologist gets involved and when you have unexplained inemia and you can't find that somebody's missin iron or missing other nutrients and they have no other good reason. We do whats called a bone marrow biopsy, take out a sliver of bone, analyze it and see whether there is scarring within the bone and that might lead to us to diagnose myelofibrosis. And when they get this diagnosis, do you find that it's something that they've never heard of either? no one's ever heard of it. It's not something that ran in their family, it's not something that they've had a friend with usually, because it's that rare. About 5,000 patients a year in the country are told they have this every year and it's something always a surprise, it's always something that needs explanation and investigation, the patients and their families and the truth is that it's something they may have had for a while and did't know it and then they learned to live with it and also you know the doctors help them adapt to it and they learn to understand it.
This is really great information so we want you to stick around because when we come back we'll take a look at some disease management options for myelofibrosis, so we'll be right back after this short break, stay with us. (music). (music). Welcome back we are here with doctor steven fein and we are talking about myelofibrosis, a rare blood and bone marrow disorder, doctor are bone marrow transplants, the only option for effectively managing this disease? myelofibrosis, now considered a blood cancer is something that we don't have a cure for with standard therapies, we still do experimental type therapies including bone marrow transplant and it does lead some to actually get cured of it. But the majority of patients of this debilitating and deadly condition actually get sicker and succumb to it and don't get cured of it by any standard treatment. And i wanted to ask you about that, the life expectancy, and what is the quality of life for people who have this? you know danielle, every patient with myelofibrosis has a different course.
Some have a more aggressive variant where they get sicker and don't feel so well during several months and may not even make it even a year or two and others have a slower course that can go on for years without really suffering, with out really needing attention, there is no single agreed apon treatment that helps these patients get through this we have to manage their symptoms. We help people with pain, we help people with itching, we help people when they feel weak and tired, maybe give blood transfusions sometimes, um, some people talk about a bone marrow transplant to try to cure some but that's still really experimental and doesnt always work out. You know before the break, we were talking about is it a cancer? is it a type of cancer, and i know there is a little bit of controversy, um in the medical community about this.
Elaborate on that? it's hard for people to really comprehend a blood cancer, but this is now considered a blood cancer, so cancers arn't just solid tumors these days, now we know blood cancers, like leukemia and lymphoma, this one is another type of blood cancer it's called a myeloprolipid cancer. Myeloprolipid neoplasm, which means that in this case it's making scars on the bone marrow that acts like a cancer. And in the minute or so that we have remaining, given the fact that myelofibrosis is rare, what words of encouragement can you give the people out there who may have it or who may know somebody or have a loved one who is suffering with this condition. It's a special rare disorder that is different for every patient but some patients have a better outlook than others.
Some live with it for a long time. The best encouragement that i can say is that new treatments are now becoming available. So it sounds like what your saying is that there is hope.
There is hope and of course new investigation is always ongoing. And i think that's something that people can hold on to if they are dealing with that, so doctor thank you so much for coming by and sharing this really great information with us this morning. Thank you danielle. It was nice to meet you, and if you'd like to find out more about myelofibrosis please visit the website its mylifewithmf.com. That's mylifewithmf.com or you can visit mpnawarness.org and share with us any of your thoughts on this vital topic as well by visiting us on facebook at balancing fans and of course on our website thebalancingact.com.
Milo-fibrosis is a chronic disorder of the blood and bone marrow caused when too many or too few blood cells are produced in the body, the result? scarring of the bone marrow, which…By: TheBalancingAct