Yippee, Boston here I come. I have received a grant from the Australian government that will allow me to fly to Boston Mass General to have proton beam...
http://www.ustrendy.com/store/product/13859/teardrop-for-chordoma Don't know the designer, but it's for a good cause! I've just ordered mine! Nadine Sent from...
found out tuesday that my clivial chordoma has no regrowth !!!! almost 3 years since pb radiation.....love docs at ucsf , i been having MRI for 4 years now and...
HI, I'm new to this. my boyfriend is 27 and recently got diagnosed with chordoma on the sacrum. he has had pain in his leg off and on since last august and...
Got my letter today, it took several weeks. They are going to phone in a week or two to do the formal work up, then send the kit. When I signed up, I asked...
Hi All, I'd like to present the forum with two questions. Your responses are greatly appreciated. a. Biopsying what might turn out to be a Chordoma poses a...
Everyone: we got a notice from the NIH who are holding a special study day on rare diseases on February 28th, organised by the NIH Office of Rare Disases...
I don't know but maybe someone could use this,maybe it applies to woman in treatment. Hope it is useful to someone. Cleaning for a reason If you know any woman...
Hi everyone - I am new to the group - I am from Chicago and being treated at Univ. of Chicago. First surgery 2001, now tumor is back and they are deciding...
Thanks for all of your feedback. Alex has been home since Wed., 2/16. He is feeling great tonight, and was able to take care of our 9 yr. old while I worked ...
I went today for therapy at Memorial Sloan Kettering as recently I almost choked to death on a ravioli. Following surgeries, radiation and other treatments so...
Many of you may not know, but my 40 yr. old husband, then 37, had 3 (t4,t5,t6)Â vertabrae removed removed in 2008 from Chordoma Cancer. Not only is it a rare...
So its been 4 months since I did the IGRT radiation treatment. I've been OK, up until a couple of weeks ago where my Lymph Nodes in my neck swelled up. Not to...
There is very exciting news re the accomplishments from researchers in 2010 which you can read here; _https://chordoma.box.net/shared/static/7bq3jchun9.pdf_ ...
This is difficult to understand but if anyone is expecting chemo or trying chemo, the Dr should be aware of attached study. Apparently, the drugs they tested...
Thank you all again for this site and your input. My husband Tom will have sacral Chordoma surgury next month. I would appreciate any ideas for lodging. I do...
Remember the Research Projects! For everyone in North America: Help the NCI to find out how chordoma works so that we can deal with it. Imagine putting this...
Hi All, Is any genetic test available for confirming chordoma? If yes, which hospitals do genetic testing? Best wishes to all, Tibela-Viviana Marcovitz...
Hi! I was recently diagnosed with sacral chordoma up to S2/S3. I don't want surgery because I was told I would lose bowel/bladder function and the ability to...
Does anyone know how to get help paying for catherizes. My brother has sacral chordoma, he had surgery in Aug 2010. As a result of this cancer he has to...
My husband has an appt. with a cardioligist and his neurosurgeon today to analyze a new tumor. He is already missing T4, 5, and 6. They say radiation, not ...
After lots of running around chasing various departments for results, samples etc ..... I finally have an appointment to discuss my plan with a surgeon. With...
Below is a link to a website devoted to chemo drugs...I've used it for years and I think it needs to be reposted... With Hope, MiMi http://www.chemocare.com/ ...
Everyone but particularly Canadians! The Chordoma DNA study is now open to Canadians. I'm signed up already. [:D] * Call Stephanie Steinbart, R.N. (800)...
To the Lady asking for info on sacral chordoma esperiences...diagnosed in 2002, operated locally.(a mistake) went to Boston in 2004, had 43 teatments, no...
