Lucky streak didn't extend to me :-(

CoolBreeze · 07-11-2012, 01:25 PM

My heart goes out to you.

I hate scan times. They don't correlate to how I feel and I don't want bad news when I feel good. I really want to put my head in the sand at times. But, I can't give up and you can't either. There are still lots of things that can be done and the next one will get you to your son's wedding.

They really are doing amazing work now especially for HER2. Just hang in there..

Becky · 07-11-2012, 02:59 PM

Dear Amanda

I know you are disappointed but wait and see what the PET scan says for certainty. What you have been on worked at least on some things so if you can't biopsy or get in a trial, add something to what you are already on? It is difficult from your signature to see if you are still on Herceptin - if not, ask to add that back in. Maybe it works on the lungs and everything else responds to what you're already on.

Sometimes we all might think if we have mets in different parts of the body (or several tumors in one part of the body) that all of those tumors are exactly the same as each other. But remember, they are cancer and cancer is a mutation and each may be a small nuance different from each other and mutating in different ways. Perhaps the lung mets hate Herceptin and respond but the skin could care less so.... If your lungs did well on Herceptin, add it back on top and see if these synergies do you some good since you have visually seen that what you are on DID do you some good. I am just thinking out loud here of course but it would be a shame to make a major change (without a nifty trial) when you got some good from this combo.

Love and hugs from me in NJ

dawny · 07-11-2012, 04:53 PM

Good luck with your PET today Amanda, thinking of you.
Dawn

Mandamoo · 07-12-2012, 03:02 PM

Thanks everyone.
I had my PET yesterday and while I don't have the full report I spoke with one of the radiologists last night (very good friend of mine). The lungs did light up and possibly a very small chest node.(5mm) comparison to my CT has not been done yet. Everywhere else is completely clear. He believes 4-5 are biopsy able though it will again be tough. None are close to the lung wall or get table via bronchoscope.
So, I am waiting today to hear from my oncologist snd expect I will attempt a needle biopsy again next week. I am very keen to get tissue as these lung mets have never responded in a way that anyone expected. I hope to God that they are not triple negative.

Thanks for all the input. I am thinking of discussing adding herceptin back in - I will need to fund either the tykerb or herceptin (tykerb will cost less but still more than $200 a day) as in Australia the government subsidies drugs not private insurance and this combination is not funded and given withdrawal of the FDA quest for this combo by GSK - unlikely to be for some time.

I also don't think I will qualify for the theresa trial as none of the tumors are 2cm.

Istill feel really good so I am going with that and trying to maintain the faith.

phil · 07-23-2012, 07:47 AM

Your cancer has progressed on a taxane, and tykerb ?Like Lorraines had. Now that T DM-1 approval is within " sight ", 6 months ?, I am encouraging "Late " Stage IV pts ( multiple re-occ's, progression on taxane/tyk. ), to give compassionate use a try.
Gen. will soon turn in final data from EMILIA , then its up to FDA in this country. Gen. seems more open to comp use requests as they have finished trial FDA forced on them.
I dont know if things could work similarly in Austr., w/ comp use ? Gen pays for drug, but ins has to pay for other expenses, labs, scans etc.