when to start freaking out

[Andi]

Joy - I'm so sorry to hear you are still getting the run around. I can certainly understand your nervousness about not being on anything at the moment. What are your onc's feelings about this? Is your copay for the Xeloda high, too, or could you maybe do as some of the others on this site and start the Xeloda now and the Tykerb when you can get things straightened out? Also, do you think your stomach issues could be nerves from the stress of all of this? I wish there was something I could do to get the ball rolling on the Tykerb for you. You are in my thoughts and prayers that your CT will come back with good results and you will get your Tykerb thing straighted out soon.

[Lolly]

Joy, I know your level of anxiety right now as I went through the same thing recently in my transition from Herceptin to Tykerb. Herceptin, even with a new chemo(Gemzar) added, wasn't keeping the nodes in check and I could feel them growing

My onc was also in transition to a new center so until he was established I was being seen by one of his former partners who was reluctant to "rock the boat" too much.

Long story short I was on an ineffectual combo for 8 weeks, then nothing for 2 weeks when my onc stopped my treatment and ordered scans. I was fairly unnerved when I finally started weekly Abraxane. I got 2 treatments under my belt and was feeling some improvement in symptoms when we added Tykerb. After just 12 days on the combo I can report that the enlarged nodes are definitely shrinking. Big sigh of relief.

You have my sympathy for sure, but I just want to assure you that it will probably be ok in the long run, because it’s clear to me from my experience and from what others have reported when a new treatment is working, the right combo at the right time can have a very dramatic effect on this disease.

Hang in there, keep fighting for Tykerb, and keep us posted…
<3 Lolly