Recurrence Confirmed, Game On

Lolly · 09-23-2005, 09:50 PM

My onc called tonight and the biopsy has confirmed recurrence to the right axilla nodes; still waiting on FISH report to confirm continued HER2 status. We discussed Navelbine again and he suggested adding Xeloda; I like that idea so far as I know several here have had great results with this combo. He also mentioned my clinic has a trial going with Herceptin, 3 weekly Taxotere, and plus or minus an anti-angiogenesis drug. He'll do some more research and will talk with Dr. Disis. Then I'll see him next Tuesday to form a plan. Will keep you posted...Game On!

<3,
Lolly

Esther · 09-23-2005, 09:55 PM

So sorry to hear that Lolly. I have experience with the Navelbine, Xeloda, Herceptin combo. It worked miracles for me. Hope you have equally good results. It was also a very tolerable treatment plan, much, much easier for me to handle that Taxetere.

09-24-2005, 07:52 AM

Well CRAP!!!!

I hate to see you jump on the duel chemos though, Lolly. It doubles your chances of symptoms to your feet and hands..... neuropathy plus hand foot. jeezzz.

I had just Navelbine/Herceptin for mediastinal mets (confirmed by biopsy) with spot on lung and pelvis. It did the trick in just a few months.

If you went single chemo you could always add the Xeloda in a few months if no response, couldn't you?

Whatever you decide, Lolly. Never mind my worries!
Much hope for quick response, few side effects and good QOL ahead,
love, hugs, xoxoxpatty

tammymarie1971 · 09-24-2005, 09:19 AM

That stinks Lolly, but I can feel your strength in your words!!!
Tammy

09-24-2005, 09:29 AM

Sorry to hear about your news. I am quite amazed at your upbeat attitude, although I'm sure that you had your moments.
Best wishes that all goes well with your treatment and that you will be NED soon.
Barbara H.

pauline · 09-24-2005, 09:38 AM

Lolly-all the best to you! In my time of following this board, I've valued your cheerful , positive input! Onward and upward!

Cheers
Pauline

Julie2 · 09-24-2005, 09:47 AM

Lolly,

Wish you a speed recovery.

Julie

Montana · 09-24-2005, 09:56 AM

So sorry to hear this Lolly. I enjoy your posts and hope you will keep us updated on your treatments.

Sue

TriciaK · 09-24-2005, 04:13 PM

Lolly, we are all the cheerleaders for your game! You have been an inspiration to all of us. I hope you can feel the love and prayers that are going out to you! Hugs, Tricia

Kim in CA · 09-27-2005, 11:20 AM

Lolly,

I am so frustrated to here your news. It's a blow to all of us, especially those of us who were so optimistic about our vaccine therapy. I know there is a good chance that the vaccine is actually working and without it who knows what our status might currently be. I know you will get things back under control and I am sending prayers and positive thoughts your way.

I am wanting to talk further with Dr. Devon at U.W. Seattle about the Adoptive T-Cell therapy she mentioned to me right before I had my Gamma Knife last month. It sounds pretty interesting, but I just haven't had time to pursue it. Whenever I get any free time I escape to the woods and trails with my horse and at least for awhile I totally forget that I have BC.

Sometimes I feel like I am trying to run away from my cancer or that I am in a state of denial, but being out in nature like that, challenging myself phyically, puts me in such a state of euphoria that I can't help but feel it helps to heal me. I hope you too have something that you are passionate about, something that gives you an adrenaline rush! I think all of us need to find that special thing that makes us light up just thinking about it. Something we do just for us. It doesn't matter what it is, we just need to do it often and try not to let this disease consume us. I know you are such a positive person, you probably are way ahead of me on this. Just do what you do best, and know that I am rooting for you too.

Love Kim

Lolly · 09-27-2005, 06:29 PM

Thank you all for your kind and encouraging words, it means so very much to know we can lean on each other! I'll try to answer some of your questions as best I can....

First, we don't think that because I've recurred it means the vaccine isn't working. These nodes just got a little ahead of the vaccine, and in fact Dr. Webster told me at one of my vaccine visits that if I were to recurr and need chemo, their thinking is that chemo may actually HELP the vaccine work better. Apparently, we have these "regulator cells" that serve to dampen immune response so things don't get out of hand, ie. autoimmune diseases, etc. Chemo kills off these regulator cells, and so the vaccine stimulated immune system might have a better chance at the cancer cells. As Brian points out, it continues to work even through chemo! WhooHoo! Don't know much about this actually, but will try to do some research.

I've been in touch with the UW people, and Doreen sent the blood draw kit down last week so my nurses can do the ninth month draw tomorrow, before I start chemo next week. Dr. Webster has mentioned the adaptave T-cell thing as a possibility after chemo is done, so will keep you all posted on that of course.

The biopsy I had was a fine needle aspiration, and my onc has sent it to Seattle for HER2 analysis, just to be sure we're still on the right track. We agreed it would be VERY strange if it's not still HER2 positive, so keeping fingers crossed.

Patty, I really do appreciate your words of experience regarding the Navelbine/Xeloda combo, but at this point I've already had Navelbine twice to treat these same nodes; each course did a pretty good job of shrinking them but since they are back again my onc thinks we need to "get tough" as Steph says, and give them a double whammy in hopes I'll have a better and longer response.

And Lyn, I didn't ask about Abraxane, as I'm hoping to "save" it in case I need it later for liver mets or something. I hope I don't, we "energizer bunnies" need a break once ina while, eh?

Hope, thank you for your sweet words of comfort; I'm sorry to hear you're not doing well, but keep your chin up. I'll be keeping you in my thoughts and prayers.

And Kim, thank you for reminding me that I need to take time to do what makes me the feel good about living! I like to sing in the shower, so I will do so every morning from now on!!!
Love to all,
Lolly

09-29-2005, 04:20 AM

Ok, got it......
Good luck then and here's hoping for very minimal side effects with quick response ((((Lolly))))
xoxoxpattyz

09-29-2005, 04:20 AM

Lolly.........
Ok, got it......
Good luck then and here's hoping for very minimal side effects with quick response ((((Lolly))))
xoxoxpattyz

Barbara2 · 09-29-2005, 04:39 PM

Keep the faith! You are in the prayers of many.......
Sending prayers and hugs, Barbara2

AlaskaAngel · 09-30-2005, 09:02 AM

Lolly....! I'm so glad this place is here to come to. And I'm glad you are so continuously seeking answers that fit your situation.

I do think Kim really does have part of the answer. Who knows what changes happen in us when we are doing whatever triggers endorphins and creates energy? I tend to believe that being active may have been as meaningful for Lance Armstrong as doing the chemo...

Affectionately,

AlaskaAngel