I was diagnosed with AL amyloidosis in March of 2014. I appreciate this forum because i have not met another amyloidosis patient in person either and this forum can be used to share with others. It is a devastating diagnosis but it is not the end of the world. As a matter of fact, my oncologist stated there may be something for us coming within the next two years. It is in the testing/approval stages now. NEOD001. Google it. It has the potential to get rid of amyloid deposits in affected organs. How’s that for a positive comment?
Wow … interesting stuff, Missy. Here’s something I found about it.
Let me move this comment to another part of the website where it will get a bit more attention. Goodness knows, we all need good news!
Seenie
Hi Missy,
Do you know that the Amyloidosis Support Groups holds meeting in 29 cities across the country?http://amyloidosissupport.org/index.html
Not only can you meet other patients face to face, there is always an expert Amyloidosis doctor there to answer any questions you may have. The Atlanta meeting is on Saturday and we will also have a rep from Prothena at the meeting to discuss the latest results on the NEOD001 trial. They attend many of the meetings and are happy to answer any questions. Recent updates from the trial are very positive and patients are doing well on the drug which has very few side effects. There is another antibody drug trial that is also targeting the removal of existing deposits that has just finished up its Phase 1 study. 11-1F4 will be expanding trial locations once they enter Phase 2 of the trial. To learn more about both trials follow this link: http://amyloidosissupport.org/clinical_trials.html. Positive things are happening and we expect even more to come down the pipeline over the next few years.
Paula
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