Hi,

A friends 3yr old daughter has been diagnosed with ALL. She is defined as near-haploidy, which I know is not good news :(

I'm researching on the net for my friend but if anyone has personal experience of this I'd be grateful if you can tell us what can be done and what to expect....

May all living beings be free from harm.

Thanks

Zafu

Try ACOR.org [Association of Cancer Online Resources] - it's a non-profit group for cancer patients and their families. There are separate areas by type of cancer.

For technical information/journals - try Oncolink: http://cancer.med.upenn.edu/templates/library/library.cfm?c=5

Not sure whether you can access the Cancer Genetics and Cytogenetics journal through Oncolink but it seems to have more articles and case studies on near-haploidy than other journals.

Thanks Jay Tor,

You are a gem, as always.

I've seen so many of your posts helping others - they really are appreciated....

((((Jay Tor)))

Zafu

Zafu:

Just did a bit more reading on near haploidy ALL. Think these are the most comprehensive and comprehensible articles:

Acute Lymphoblastic Leukemia - Preliminary Draft
[This is a clinician's/prof's first draft - includes a few typos.]
http://srv2.lycoming.edu/~newman/courses/bio22298/disorderpapers/leukemia/preliminary.html

Anomalies nearhaploidID1045
[Another medical text/class article - excellent for looking up specific anomalies]http://www.infobiogen.fr/services/chromcancer/Anomalies/nearhaploidID1045.html

Acute Lymphoblastic Leukaemia A Review
[Post-grad HEM/ONC medical review] http://www.tcd.ie/tsmj/2000/ALL.html

Clinical trials and cancer treatment/research groups:

Not sure what the U.K. protocols are esp. with childhood cancers. In Canada, children with cancer are encouraged to participate in clinical trials which are usually conducted in the largest [and best] paediatric teaching/research hospitals. Also, children with particularly difficult cancers [i.e. high frequency of relapse, second remissions are rare or difficult to achieve, or with cancers that have high metastasis rates] are usually brought into remission as quickly as possible and then, equally fast, undergo bone marrow transplant*.

Our child had AML while a toddler we got to know very well during hospitalization had trisomy ALL. Because both these leukemias are considered high risk [poor outcome prognoses] with standard therapy [chemo/radiation alone], as soon as an accurate diagnosis was obtained both children and their immediate families were HLA-typed immediately.

* 'Bone marrow transplant' includes a number of variants these days. Currently, allogenic peripheral blood stem cell transplant [PBSCT or HPCT] is preferred for these reasons: 1) stem cells engraft much faster than bone marrow and 2) allogenic transplants confer a graft-versus-leukemia effect.

Here are the U.S. newly diagnosed paeds ALL clinical trials. Suggest you read these for background info. Quite often these trials are multi-centre [multinational] in order to ensure adequate sample sizes for statistical analysis of results.
http://clinicaltrials.gov/ct/gui/action/SearchAction;jsessionid=C041A3A042C38624 1435D394572727C7?term=newly+diagnosed+pe diatric+ALL&submit=Search

Another way to locate clinical trial information is through various cancer research groups such as ECOG [Eastern Cooperative Oncology Group] and EORTC [European Organization for Research and Treatment of Cancer].
http://www.ecog.org/general/iglink.html
http://www.eortc.be/

There's a great deal of information to absorb from this point on. If I can help with any specific information, let me know.

Regards,
Jay


[This message has been edited by Jay Tor (edited 08-12-2002).]

Thanks Jay,

I'll investigate the links and pass the info onto my friends.......

Kind thoughts,

Zafu