TDM-1 side effects

katymc · 12-01-2012, 07:30 PM

Hi all, thanks for the posts and the positive attitudes. I have had bone mets for 3 1/2 years and have been thru a number of treatments. I found a trial in Fairfax VA and have just had my second treatment. It was interesting to hear about the dry eyes because I thought my problem was due to multiple eye surgeries for retinal detachment some years ago but now it makes sense to me. And the dry mouth - some mornings I can barely speak (my husband probably loves it!) but I have Biotene in my bathroom that I haven't been using. My dentist gave it to me ages ago. It's great to see your posts because I always just get on with whatever symptoms I have and don't really consider trying to "fix" them 'cause I'm used to discomfort from the various treatments I've had. It is so good to "talk" with all of you. Now I am off to put drops in my eyes and Biotene in my mouth! BTW - there is also a Biotene toothpaste - I have that too! Take care my fellow fighters and enjoy this beautiful season. Katy

phil · 12-02-2012, 07:16 PM

Hi Katy, I am Phil's wife Lorraine and I started TDM-1 in Fairfax 2 years ago. The people are great there. Do you see Bridget , Stacey, and Dr. Robert? If you do please tell them Lorraine from MGH in Boston says "hi and I am still NED!" I have the dry mouth too and Biotene mouthwash and spray both work very well. My best to you, Lorraine

katymc · 12-03-2012, 05:56 AM

Thanks for the post Lorraine - yes, they are a great bunch! Did you move and have to leave the trial? I forget the names of the nurses I've seen so far but I will tell Dr. Robert that we've "talked". How encouraging to be NED after 2 years. I've often thought that the scariest words in the english language must be "my oncologist" but then we have the most exciting when you're told you're "NED" - that's my hope for me and all of us on this trial. Are you still on TDM1? Have a lovely day and take care of yourself. Katy

phil · 12-03-2012, 12:10 PM

HI Katy, I was in fairfax for a year because they closed expanded axcess and fairfax was one of 13 sites that still had it opened. I traveled for 14 months to get my treatment. It was well wotth it. Fianlly I was able to come back to Boston in Jan of this year. Stacey and Bridget are the research co ordinators not nurses they were awesome. I believe you are right NED is a wonderful word. God is so good. Lorraine

phil · 01-31-2013, 11:49 AM

even tho your plats are unusual, the result is similar to Lorraines low plats . your plats are not healthy. glad your team is giving u extra tiem . stage iv's deserve flexibility , esp. if response is so good. i suggest you start a diet similar to what we do, the diet works very well w/ red counts like rbc, hemoglobin, hematocrit. L.'s red counts are higher than yours, normal range. that helps w/ energy. we recommend especially sharks liver oil, 2 tabs a day. red meat , L . doesnt like it , but she can go vegetarian in 2014 !! marinate kale in olive oil, spinach. may help give healthier plats too. e-mail me at pmccartinjr@comcast.net to talk about stories . we are collecting , planning. You and Lorraine are some of avery lucky few , many do not know how lucky they are , This FDA needs to be changed, so others get the chance at new drugs in the future.