Recurrence Confirmed, Game On

[Lolly]

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]

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.

[pattyz]

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]

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

[Guest]

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]

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]

Lolly,

Wish you a speed recovery.

Julie

[Montana]

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

Sue

[StephN]

Dear Lolly -
Bummer to hear this.
We know you really DO have a lot on your plate with your parent's situations and all. BUT, it is time for you to get some other extra help for them and for you to get busy and kick butt on these nodes once and for all. If you have to take a bigger helping of drugs to do that, and they make you feel less well - so be it.
These nodes have been bedeviling you for three or so years by now. Will be very interested in what Dr. Disis thinks will be the best treatment plan in light of your recent vaccines.
My response is to "get tough" - hope others are not offended by my attitude.
Know you are doing all the research and are very involved in this decision.

[Julie2]

I am sorry to hear the news. I was so encouraged by the fact that you were getting a good response to the vaccine and I was preparing myself to participate in the trial. What does Dr Disis think about the reccurence?

wish you a speedy recovery.
Julie

[TriciaK]

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

[lindaw]

Dear Lolly

I had hoped it was not a recurrence.My thoughts are with you now - I have had good responses to skin mets with xeloda adn Herceptin. I have just started the first cycle of a second attempt.All the best.Keep us posted .
love
linda

[al from Canada]

Hey Lolly,

Our heart goes out to you!!! Do not lose faith!!
I wounder if there is some test the Seattle group can do to bring some closure to the results of the effectiveness of the vaccine, or the interaction vis-a-vis .HER2 status..etc. I'm not sure I know what I'm talking about but I'm sure they might.

Thinking of you,
Al and Linda

[mamacze]

Good Grief Lolly!

This absolutely stinks; you come up for air then BOOM, you are back in the game again. You know, I asked dear Dr. Devon et al what the procedure is if/when we recur; if I remember correctly, we go through the proscribed regimen of chemo; then go back to Seattle. They then take our blood, centrofuge it and keep our t-cells for a re-infusion just to give the cancer another one-two punch. Get your papa settled; then make sure your diet is good, prepare for a chemo regimen that you and your docs agree on; then put those boxing gloves on and kick some butt. We are all cheering for you ...
Love Kim from CT

[kristen]

Lolly,

Best to you. I will be thinking of you and sending prayers your way.

[sassy]

Lolly,

You have been a lot of help and a source of inspiration for me. Your strength, courage and attitude will carry you thru.

Keeping you in my prayers---keep the faith.

Sassy
________
Classaction Settlements (http://classactionsettlements.org/)

[Lyn]

Hey Lolly, are we true sisters or what? I sympathaise with you, but we keep coming back for more. Please question your onc on Abraxane, the new Taxane, gentler and more toxic than Taxotere and Taxol, and no premeds if I remember, and you got it FDA'd in February. I have had both T & T and still got reoccurences. Are you taking any other prescription meds, mine impaired the Taxanes and Cyclophospamide, any wonder it kept coming back. I haven't noticed anything to shout about yet but I suppose early days and low doses. I have a feeling that going cold turkey on the eostrogen blocker was what fuelled my thoughts of throwing it all in and looking forward to a better after life. Now I have realised that I feel as if a great fog has gone from around me. So I wouldn't recommend anyone going cold turkey on the eostrogen blockers, I am pretty tough but I nearly succumbed to the dark thoughts. I have to declare that You, Lolly, are now officially one of the "Energise Bunnies", welcome tot he club. I think we have a few more out there, and if I remember right the bunnies are pink!! I have all my thingys crossed and prayers wishing that this will also be the last flare up for you so we can go on and have some normality in our lives and keep looking for the cure in peace without all the treatments, but then if we weren't in treatment how could be share, maybe our vocation in life, pretty shittty luck of the draw, but like they say, if the big guy didn't think we could handle it, he wouldn't give it out. Dam, I wish he would take a holiday and give us a break.

Love & Hugs Lyn

[Joy]

I'm so sorry about more nonsense for you. You, though, are one of those people that I just know will be alright. Not that it comes easily. Lean on us the way we have leaned on you and keep us in the loop.
Sending you a lot of good energy.

[Becky]

Lolly


Keep up the good fight. My thoughts and prayers are with you.

Becky

[Unregistered]

Lolly, I've always enjoyed reading your entries and replies. The words of wisdom and experience have been extremely helpful to me. I know you'll fight the latest and I will continue reading your posts for a long time. Take care . Sally

[jeff]

Lolly,

Just a quick note to say that I'm sorry that you've got another hurdle to jump...It must be tiring.

But I'll join the chorus too: you are one of the folks on this board who give me hope all the time. I really admire your balanced and passionate approach to living with this disease...

All the best,
Jeff

[hope]

My thoughts and prayers are with you. You have always been a great inspiration to me and have given me a lot of knowledge and help. I also am not doing so good. So we will both continue fighting our battle. God bless you.

[Unregistered]

Lolly,

I am so sorry to hear about this. You have a great attitude and I am sure you will find a combo that works for you. Atleast it is still localized in the nodes.

My thoughts and prayers are with you,
XOXO
Anne

[Rozebud]

Lolly - I read your posts and admire you so much. My prayers are with you....I'm sure you are frustrated. Also, I'm feeling pretty ignorant here - does that imply the vaccine isn't working or is it not related? Sorry if that's a stupid question, I just don't know that much about how the vaccines work.

[Brian]

Dear Lolly:

Sorry to hear that you have had a recurrance despite your vaccine treatments. Lisa also had the same problem which we addressed with surgery. A couple of thoughts for you in this regard, first, Lisa had tissue samples sent to Seattle for review. The results were very encouraging as they showed that Lisa's t-cells were attacking her small tumors. In addition, Dr. Disis advised us that they had had a past patient develop a tumor on her spine after taking all 6 vaccine treatments. Apparently, this was very serious and the woman did not think she would survive. In six months the tumor resolved and the woman is alive today.

In sum, do not give up hope! Your vaccine may be working as we speak and I am sure your chemo will defeat these tumors once again.

God Bless and Good Luck!

Brian and Lisa

[StephN]

Brian wrote: "Your vaccine may be working as we speak"

This is what I thought, but maybe Lolly's tumor activity just has the upper hand at the moment and was wondering if they would ask for some tissue or blood at the U of W.
Thanks for mentioning that and for the story of the lady with the spine met! You did not say what, if any, chemos that lady took to get that tumor resolved.

[briandod]

Steph & Lolly,

Just to let you know, Dr. Disis told us that the lady with the spine met had taken so much chemo that she was resistant. Ultimately her onc tried a round of chemo which was totally ineffective and she actually anticipated the end. She said goodby to her children and to her surprise something worked to eliminate the tumor. Dr. Disis said that they were not able to biopsy the tumor, but it had all the appearances of cancer.

In Lisa's case the tissue sample showed that her t-cells had invaded her tumors and were actually attacking them.

Brian

[Diane H]

Have not been participating long here but already know what support and wisdom you have shared with others, you are in my prayers, cheering you on, Diane

[Kim in CA]

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]

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

[pattyz]

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

[pattyz]

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

[Barbara2]

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

[AlaskaAngel]

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