Neratinib Clinical Trial

[Savta]

So here I am, six weeks into the trial. I still get really bad bouts of diarrhea, and feel weak and queasy--but I do get a few good days in between the lousy ones. I still don't know what is good to eat--and I keep trying new ideas--so thanks for all the suggestions. I was feeling really out of shape, so I decided to go back to taking multivitamins, and I joined a gym. I go three times a week, and even on the bad days, it picks me up. Whatever works, right? In addition, my physiotherapist said that exercise in water is really good for the mild lymphedema. So I get that in too. It's all about staying well.

[ElisabethH]

Hello everyone - just want to say how useful it has been to read all your comments. I live in Madrid, Spain and have been selected for this trial here. I started on Thursday after all the usual tests. It has been particularly good to read about it all in English! My Spanish isn't bad, but when its so serious, you want to check things out in your own language - well, I did anyway! I couldn't find any info in England - so you all over there are helping!
I had diarrhea the second day, so I guess I am taking the real thing, which is actually good to know!
I also signed another agreement on Thursday to release my biopsy tissue samples for genetic testing - I apparently have the right to see the results, so that is a very interesting side issue.

[KRISS]

Well, just got back from my 6 month check in and am told I have to go off the drug. Blood work and Ekg are great but my muga dropped from 68 to 42. Protocol says off drug for 3 weeks then redo the muga if I am not above 50 then I am off for good even if it went to 49. Anyone else out there drop that much? I only went down 17 point during all of herceptin and went back up right away. Hoping this time it will as well. At least I will get a rest from the diarreha! Keeping you all in my thoughts.