Hello to all, I want to say thank you for all the kind words and thoughts and prayers. It really helps. So Ill be seeing my Doctors on Wed to discuss my treatment options and Im trying to become as well imformed about the types of chemotherapy that may be available to me.
I have been trying to research stuff online but I really need access to medical journal (ie neuro-oncology) and as an individual I dont have access. I was wondering if any of you who who access to online journal services through work might be able to help me educate myself?
I know its a lot to ask but any information I can get my hands on at this point will really allow me to make the best decision regarding my treatment.
To be specific I am looking for any information about treating patients with WHO gradeIII oligodendrogliomas. My tumor has deletions on 1p and 19q, which have shown in some studies to be markers of chemosensitivty. This topic has been one that neuroloncologist have been particularly interested in becuase this genetic subset may allow patients to delay or possibly avoid having to have raditation therapy.
Any information that anyone could find on this topic would be greatly appreciated. I have beeen asked to participate in a clinical trial at Sloan Kettering, but I want to know a lot more before I make my decision.
If anyone has any other ideas about where or how to find information about this stuff, please let me know. This place has always been such a great source of advice for me and I want to thank you all, I never thought I would need to ask anything like this. You can send any ideas to me privately or to ragansculpt@aol.com. Or post them on the board, an open discussion might bring up some good ideas, Thank you,
Tim
Tim,
I am sorry to hear your news - been scarce around here myself lately, but wanted to express my support for you. As you are already aware, OPM is an electronic family & we are definitely there to offer what support we can.
Regarding your info request, as an anesthesiologist, this topic does not fall within my field of expertise. But, I will gladly snoop around & see if I can find some resources for you. We have a couple of top-nothc neurosurgeons here - I will bend their ears to see what they offer up.
Again, my best wishes to you.
Hi,
I’ve sent you a recent review article which covers some recent clinical trial data and summarizes the current research going on in this field–may or may not be helpful to you.
It is difficult sometimes to get access to the literature without an academic or work affiliation, but it should be possible. Most of the major cancer centers (and likely Sloan Kettering) have some kind of patient advocate/librarian/information source that can help you do research. I’d recommend calling Sloan Kettering and seeing if they can help you get articles and help teach you how to find your own. If not there may be some kind of cancer support community or network in NJ nearer to you that may be able to help.
As a med student, to find this kind of information I use PubMed, the National Library of Medicine’s standard database of the medical literature. In this case I got a big list of articles by using the search term “oligodendroglioma AND 19q”; this included 38 review articles, which are usually the best place to start since they generally are discussing the state of research and will point you towards which specific studies you might want to look at. This is much more efficient than going through the original studies one by one.
I also use Google Scholar a fair amount, which I think is also a great resource. in this case my institution has a version of it which allows us to link up from the search results to our digital library, which makes it more useful. Hopefully if you can use Sloan Kettering’s library or another similar resource you might be able to do the same. Also, Google Scholar can help you find some things that are more in the public domain.
The National Cancer Institute has some helpful information resources. They’re at http://www.cancer.gov . Their website includes ways of searching for clinical trials that might be available to you–that is, to evaluate which trials might be best from your point of view rather than just the ones that your oncologists might be recruiting you for. (Obviously you will want to discuss your ideas with your oncologist.)
Good luck.
best regards
joe
Hey Joe, just wanted to say thanks for the article and let you know that Ill be meeting with Gabe from OPM, he works at Sloan Kettering, which is where Im being treated, so he’s going to show me the library!!