update - what to do?

[Pam P]

From my previous post a couple of weeks ago... I still have the rash on arms, legs, neck, face and swelling under each eye. I also have the worst mouth sores ever.

I saw the onc. today. Tumor marker ca2729 UP again - now 2991! Current tx not working. He took me off everything: xeloda, tykerb, herceptin, aromasin. Want me to take 2 weeks off and hopefully get all these side effects or allergic reactions cleared up. I actually stopped taking the oral stuff on Monday myself.

In 2 weeks I'll see him again and decide next tx. The 2 choices are:

1) abraxane, herceptin (& continue zometa). I haven't had abraxane before so this could work okay for me.

2) tdm1 eap .... IF I can show progression on xeloda. The raised tm's don't count - it has to show on a scan. My last pet/ct in early July was stable. I will have another scan within the next week or so.

If scan is stable I don't qualify for tdm1 according to research study nurse, so then abraxane is my tx. If scan shows progression (I don't want to even hope for progression) then I can maybe qualify for tdm1 eap.

The closest place for me to get tdm1 is in Cedar Rapids IA - about 280 miles from me. This would be a hardship for me in travel, expense, schedule coordination etc. I don't think I can drive that far by myself these days so will need to find people to go with he. I couldn't do it in one day either so each trip would include an overnight stay.

My onc. says he'll support either choice. He thinks the tdm1 "might" have better success for me - but only slightly and just a guess on his part - not a vote one way or the other. As excited as we all are about this new drug it's still not a magic bullet. My onc. also says whichever one I go with now.... when it fails the other one will be in my future anyway so it's just a matter of which order to choose.


genentech tells me there are 9 eap sites open now. They plan to have 20 open in the US but cannot tell me where or when others might be. There already is a clinical trial here in Mpls (which I don't qualify for) so maybe if I go with the abraxane now I can get the tdm1 loacally later - either on eap or fda approval. If not I could still arrange to go to IA.

So I'm thinking .... will see what the scan shows before I get too committed to one choice just in case nothing new shows up. In the meantime I have sent records in to Cedar Rapids site but can do no more right now.

Now I'm headed for a lovely meal of mashed potatoes and popsicle for dessert which is all I can tolerate in my mouth today.

Pam