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Editor's Note

The following article is a status update to the article, "Researchers Need Leiomyosarcoma (LMS) Tissue Samples For Collaborative Microarray Study", which appeared in the October Issue of ESUN.

 

Tissue Drive to Cure Leiomyosarcoma: Status

 

by

 

Iqbal Ahmed

Stanford Study Advocate

 

When we announced the van de Rijn leiomyosarcoma study at Stanford a few weeks ago, we assumed that almost every one who learns about this research would want to participate in it. As LMS patients, we really believed and counted on a high level of participation from the LMS community. This study is attempting to discover the causes that make leiomyosarcoma tumors grow in our bodies.

 

We are delighted that three weeks into the tissue collection drive, we have collected 48 tissue samples from 30 patients. To those of you who responded so quickly, we want to thank you. When we evaluate these results against our stated goal of collecting 500 tissue samples, however, we know that we have a way to go. We know that LMS patients want to participate in a study which can benefit them individually, benefit the LMS community at large, and benefit future LMS patients. We are hopeful that once the study discovers what is causing LMS to attack different parts of our bodies, a targeted drug like Gleevec could either cure LMS or ultimately treat it effectively. Wouldn’t that be great? To accomplish this goal, we need to do our part and get our tissue samples to the Stanford Study. We have recently heard of the following obstacles that make this difficult for some people:

 

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LMS patients are going through a lot of emotional and physical hardship dealing with their conditions. 

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Some people are just too sick physically to find enough energy to fill out necessary paperwork to donate tissues.  

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Others don’t have the energy to deal with some pathology labs that do not cooperate when asked to send tissues to Stanford. 

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Other reasons are technology issues such as incompatible software, older computers, non-availability of printers and fax machines, complicated instructions and the multiple steps necessary to complete tasks. 

When faced with these formidable challenges, it is easy for a patient to just put off things, and assume that someone else will step in with his/her tissue sample and the research will go on.

 

To address these issues, we want to make it easier for LMS patients to donate their tissues to the Stanford research. If an LMS patient asks us to help, we will fill out all the forms for them, call and deal with the pathology lab for them, and we will even mail forms to Stanford.

 

The probability of LMS patients’ success and the success of the LMS research depends on the quantity of tissue samples and on the quality of the last tissues we collect—one LMS patient’s sample may tell the researchers something that no other tissue can. For us to succeed, we need each and every one of you donating tissues to the Stanford study.

 

All you have left to do now is contact us and tell us you want to donate tissue to the van de Rijn Study at Stanford. We will take care of the rest. Together we will lick this disease.

 

The articleGene Profiling: Unlocking the Inner Workings of Sarcoma Cells” by Drs. Mackall and Khan in the October issue of ESUN provides an excellent introduction to microarray analysis. Using microarray technology thousands of genes can be analyzed from samples in less time than it previously took researchers to study a single gene. This technology is providing hope in the study of rare cancers like LMS.  Links are provided to a number of online microarray tutorials and resources in the above article.

 

Feedback and Questions

We would appreciate receiving any comments or questions regarding the content of this article.  Click here to send us a note. 

 

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