New to posting here..not new to BC or Herceptin
 

I am not sure how this forum woks...I'm probably posting in the wrong place.

lI was dx'd in 1-2000 w/ bi-lateral HER2+++, IBC, IDC, DCIS, @ Stage III. Had 3 A/C, double MRM, 4 more A/C, bi-lateral rads, ending w/ Taxol. Recurred skin mets in 6-02, and that is when I started Herceptin. (I now have mets to many lymph nodes in chest and abdomen. The skin mets are spreading, but so far, I've never had any open lesions.) To attempt making a long story short.....I had a chemo break from 2004 til 11- 2007. I've now been on and off different chemos since, and it appears I've become resistant to a number of chemos and to Herceptin as well. Tx options starting to dwindle & as my TM's are climbing, so is my anxiety.

My LVEF had gone down to 40, but I have been able to get it back up to 60, in anticipation of perhaps qualifying for the Phase II Super-Herceptin trial. Unfortunately since I've had more than 3 types of chemo, I do not qualify for this particular trial. However, another trial w/ Super-Herceptin was supposed to start recruiting this last July for people w/ multiple chemo usage along w/ having Tykerb fail, but it has not started as of yet. I have not yet tried Tykerb, due to ongoing GI problems, but my onc has said it is the next choice.

I am trying to find something other than chemo for control/stability of this stinking disease....any ideas/thoughts/advice?!

daybyday in California

DaybyDay
Welcome to our group...you are quite a trooper as you have had alot in 8 years, but the important fact is that you are still here and treatments are changing constantly. I am behind you a year or 2, but have also been finding resistance to chemo...just wondering if you could maybe try Tykerb/Avastin or Tykerb Xeloda...I know you said that the GI issues were concerning, but Brenda and Chrisy on this board are resident experts in these combos...i am sure they will respond.
Again, welcome, you have found a wealth of wise women and men here, who will help you in any way they can....the day i found this board was truly prayers answered. I do not think I could have made this journey this far without all the love and wisdom I have found here.

Welcome Daybyday! Wish you didn't need to be here, but welcome. I've been reading a lot about Herceptin, Tykerb and Xeloda (or Avastin) combination. Lots of good results. Several can give you the tips needed to cut back the side effects of Tykerb. Lots of luck and best wishes. ma

welcome to the group. i'm sure you'll find the answers you need from someone here. wish i'd known about this group when i was first diagnosed.