Bad scan--progression to lymph nodes
 

Re: Bad scan--progression to lymph nodes
 

One other option would be to check with Genentech and your oncologist to partake in T-DM1's expanded access trial. Trial which was reactivated a couple days ago from no longer available to available status, was today set to temporarily unavailable status again.
This might be a possible candidate for future treatment for you when Genentech reactivates it.
Herceptin no longer working, frequently, after being conjugated with maytansine, does regain its efficacy again.

http://www.clinicaltrials.gov/ct2/sh...1120561&rank=1

Re: Bad scan--progression to lymph nodes
 

Vicki,
I am so sorry that you had this news. Schnooder gave you excellent advice. I am certain you will get on the path to eradicate these mets. Sending warm thoughts,
Karen

Re: Bad scan--progression to lymph nodes
 

Thanks everyone. It's impossible for "civilians" to understand the importance of targeted drugs to us with Her2+++ and why I'm taking this so hard. I'm so pissed off at cancer right now. I know it doesn't fight fair but still...

Re: Bad scan--progression to lymph nodes
 

Vicki,
I'm so sorry you got this news. I'll be hoping and praying my hardest that the new chemo cocktail will help you get a handle on those nodes.
You are so right...cancer doesn't fight fair. It sucks! Royally!
Is TDM-1 something you might consider?

Thinking of you
Denise

Re: Bad scan--progression to lymph nodes
 

Vicki,

So sorry. It isn't fair. Cancer sucks.

If I were you I'd try to get TDM-1, as was suggested.

As for other things to do, anything that boosts your immune system (and doesn't interfere with medications) can't hurt and might help. That includes exercise, green tea, guided imagery, and mindfulness meditation. Vividly visualize the mets shrinking. The value to me of doing that is it makes me feel less hopeless. It also improves my mood and therefore enhances quality of life.

Hang in there!

Re: Bad scan--progression to lymph nodes
 

Thanks all. I've recovered from my anxiety. Yes, I plan to pursue TDM1 availability. From what I can tell the nearest trial site is 4 hrs away. Unfortunatly, Alabama doesn't require insurance companies to cover any trial expenses so that's another hurdle to work on. I've followed Mike F's efforts to have it administered for his wife at their local hospital and I would also be the first (at this time) patient on TDM1 at my clinic.

My onc kept reassuring me there are "lots of" med combos to try and she really wants me to try Tykerb/Xelodia for 3 months before trying TDM1. She has a lot of confidence in Tykerb. I was on tykerb and Herceptin for 3 months in the spring when my mets reoccurred and had progression on that combo then went on Abraxane & Herceptin. Looking at my timeline I'm suspicious Herceptin stopped working 6 months ago so maybe Tykerb didnt really get a chance.

We are taking a short (much needed) vacation this week but she said "I don't want to do nothing for a week" so starting Tykerb tomorrow and then Xelodia labor day when we return. She didn't want me to start xeloda before we leave and have side effect issues while gone.

Her urgency added to my anxiety about losing Herceptin. I have never and will not ask the dreaded question b/c I don't want to concede anything.

Re: Bad scan--progression to lymph nodes
 

Only thing I can add is during my time on Xeloda, I had a B6/B12 shot twice a week to offset the Xeloda side affects - guess its tough on the hands and soles. I never had an issue. My Naturopath had found some research on B6 trials that were showing success. You might want to run the idea by your doc.

Re: Bad scan--progression to lymph nodes
 

Vicki, enjoy your vacation rest up and get ready for the next battle. I wish I had some usefull advise to offer.

All the best

Jenny

Re: Bad scan--progression to lymph nodes
 

I think we have several people who did well on Tykerb and Xeloda.

Another thing to keep in mind is taking a break, or taking time to reassess, is OK. People take little treatment breaks, or they spend time evaluating options, and it doesn't adversely affect their outcome.

Hang in there Vicki.

Re: Bad scan--progression to lymph nodes
 

Thanks for taking time to wish me well. I had a regular appt w/ surgeon today. There are several affected nodes so surgery isnt an option.

Re: Bad scan--progression to lymph nodes
 

Vicki...((((hugs))) Im sorry to hear the news. I too have read stories of your current combination being very effective, so try to keep the positive thoughts. You've moved on from something that wasn't working to something that is going to kick that cancer's butt.