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Old 09-23-2005, 09:50 PM   #1
Lolly
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Red face Recurrence Confirmed, Game On

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
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Old 09-23-2005, 09:55 PM   #2
Esther
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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.
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Old 09-24-2005, 07:52 AM   #3
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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
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Old 09-24-2005, 09:19 AM   #4
tammymarie1971
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That stinks Lolly, but I can feel your strength in your words!!!
Tammy
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Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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Old 09-24-2005, 09:29 AM   #5
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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.
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Old 09-24-2005, 09:38 AM   #6
pauline
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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
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Old 09-24-2005, 09:47 AM   #7
Julie2
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Julie2

Lolly,

Wish you a speed recovery.

Julie
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Old 09-24-2005, 09:56 AM   #8
Montana
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So sorry to hear this Lolly. I enjoy your posts and hope you will keep us updated on your treatments.

Sue
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Old 09-24-2005, 11:29 AM   #9
StephN
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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.
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Old 09-24-2005, 03:06 PM   #10
Julie2
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Julie

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

Last edited by Julie2; 09-24-2005 at 06:24 PM..
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Old 09-24-2005, 04:13 PM   #11
TriciaK
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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
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Old 09-24-2005, 04:30 PM   #12
lindaw
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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
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Old 09-24-2005, 06:07 PM   #13
al from Canada
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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
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Old 09-24-2005, 07:12 PM   #14
mamacze
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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
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Old 09-24-2005, 07:14 PM   #15
kristen
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Lolly,

Best to you. I will be thinking of you and sending prayers your way.
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Take care, k
DX: 10/29/03-Stage IIB, 3/12 nodes +, er/pr-,
Grade 3
MRM: 11/07/03
TX: TCH-BRICG Study-6 tx's; 12/15/03
Herceptin; til 12/14/04
Rads: 30 days
BRCA neg
S-Gap: 12/15/04
Oct 05: LAVH
NED
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Old 09-24-2005, 08:32 PM   #16
sassy
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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
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Old 09-25-2005, 12:39 AM   #17
Lyn
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Cool

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
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Old 09-25-2005, 07:43 AM   #18
Joy
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Well, Lolly

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.
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 09-25-2005, 08:01 AM   #19
Becky
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Lolly


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

Becky
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Old 09-25-2005, 01:57 PM   #20
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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
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