Any doctors that can answer this?
My 9 year old daughter has been diagnosed with a rare form of Leukemia called biphenotypic acute leukemia. What are her chances of survival? Because it is so rare, I am having difficulties finding out the stats. We know the doctors are sidestepping our questions because they don't think we need to know. But we do. We want to know. They just keep saying things like" Well, what if the chance was only 1%? Would you not treat her?" Obviously, we are treating her and she is in chemo right now. We just want to know what we are up against. There are plenty of stats for AML and ALL, and those stats are given to the parents. We would like the stats in our case. Right now she is netrophenic (sp?) because of the chemo. They keep telling us she will be home on Monday...I just don't understand. She can't even leave her hospital room to go to the playroom because of her low white blood cells. How the heck is she supposed to come home on Monday??
- Panda
You should ask to sit down with your childs doctor and ask for specific information about the disease. In general, pediatric oncologists are in the business of saving lives and do not like 'statistics' . . they will tell you to totally ignore statistical information because it does not apply to individuals . . and you should listen to them. Statistics are not to determine if your little girl is going to die . . it is generalized information about the disease as a whole . . and can help doctors determine treatment objectives. The doctors will do everything they possibly can to save your daughter . . but up front you should know that there are no guarantees. There is no 'cure' for cancer . . just treatment and the treatment may lead to an 'indiviudal cure' for your child . . its a chance . . and the best one you'll get.
Information about your child's disease can be found online at PubMed . . you will need to do a search .. however, you should be warned that this information can be difficult to interpret if you don't understand the jargon. You should try to join a support group of parents who have children with ALL or AML .. your daughters type of cancer is bi or a combination of these two types of cancer . . shares characteristics with both. It is rare. According to the literature it appears to have a better outcome in children than it does adults . . but these are questions you should direct towards your childs doctors whenever possible. Support groups may also share information and resoureces with you.
As for the low blood counts . . the counts go up and down according to treatments . . since your daughter just started than she probably won't be neutrapenic as long as a child who has had cancer for over a year or more. She should bounce back and her doctors expect it will be sooner than later.
Your daughters doctors are experienced in knowing this because they've seen many children with Leukemia and cancers.
Try joining a Leukemia support group . . it may be possible to find others with this same subtype:
http://community.lls.org/community/bloodcancer
- SilenceIsDeafening
http://www.cancer.org/docroot/CRI/CRI_2_3x.asp?dt=24
Mixed lineage acute leukemias
In recent years, newer lab tests have shown that a small number of ALL cases actually have both lymphocytic and myeloid features. Sometimes the leukemia cells have both myeloid and lymphocytic traits in the same cells. In other cases, a leukemia patient may have some cells with myeloid features and others with lymphocytic features. These types of leukemias may be called mixed lineage leukemia, ALL with myeloid markers (My+ ALL), AML with lymphoid markers, or biphenotypic acute leukemia (BAL).
Most studies suggest these leukemias tend to have a poorer outlook than standard subtypes of ALL or AML. There is no standard treatment for these leukemias. Intensive treatment (such as stem cell transplant) is often used when possible, as they have a high risk of recurrence after treatment.
This compilation shows that the most frequent type of biphenotypic AL (BAL) involves the co-expression of markers of myeloid- and B-lineage, between 47 and 72% depending on the series.
- Spreedog
Wonderful answer by Panda as always.
Did you understand the excellent answer by "Silence..."
I looked over several sites to find a thorough overview for you.
I liked this one best http://emedicine.medscape.com/article/990113-diagnosis
Look at the section on "immunophenotyping."
This has become incredibly complex in the past 10 to 15 years
Panda is right that you may have trouble unless you have a medical background.
Here's the part of the site above I would focus on :
" * Overall, the cure rate for childhood acute lymphoblastic leukemia is more than 80%. However, the prognosis depends on the clinical and laboratory features described above.
* In general, the prognosis is best in children aged 1-10 years."
I have spent large amounts of time hashing over statistics with anxious people - trying to explain the complexities of leukemias and lymphomas in particular. The statistical numbers from different studies looking at other people will never tell you how well your unique child will do. What drives people crazy is that the numbers always vary from one group studied to the next. That is because you never have a group of identical patients with exactly the same disease. Each person is special. Each one is unique.
Your doctors could spend hours discussing studies and statistical results. There are more important things to spend time discussing. By all means ask questions, but try not to get caught up in statistics. What people are really asking is a prediction for the future. Doctors never know this for certain in any leukemia case.
Leukemia — Comprehensive overview covers symptoms, causes, risk factors, treatment of this blood-related cancer.
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