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Believe51 · 12-05-2008, 02:14 PM

cullenhill@earthlink.net
Guest

Posts: n/a

What to do now?
Just wondering, when can someone start Tykerb. Is this only taken after there's a reaccurrance. I was dianosed in Aug.2007, age 43, Ivasive Ductial Carcinoma, poorly Differentiated. ER/PR-, HER2+ gene amplification with a HER2

17Z1 ratio of 12.0, node positive. I had 4 rounds TAC, weekly Herceptin. Bilateral mastectomy Dec. 11,2007. Residual minute foci of Invasive Ductal Carcinoma, Nodes showed no evidence of malignancy, at surgery. Jan.2008 started Taxol, continued weekly Herceptin, 35 radiation treatments. I should be finished with Herceptin in Jan. 2009. I have asked 2 oncologist, and my nurse if I could take anything else, they all say no. One onc. told me if I had a reaccuuance I needed to come to his cancer center and see their BC oncologist. (Since June 2008 we have not had a regular onc!!!) I have read that Tykerb sometimes is given after one finishes Herceptin. Anyway I am ready to finish with treatments, been weekly since Aug. 2007. But am really scared not to be doing something to keep this at bay. One onc. I saw said there was a 50/50 chance of reaccurrance. HELP! If any one has any advice please let me know.

Cheryl

cullenhill@earthlink.net

Today, 03:53 PM #2 Believe51

Senior Member

Join Date: Jun 2007

Location: RI State Motto "HOPE"<<>> 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE

Posts: 1,266

Hello Cheryl

Welcome to our family, so glad you found us but sad that you had to. First off I was wondering if you could let us know a little more about yourself so others could help better.

Few things.....let no one tell you what your chances are (re:50/50), we break the rules and stats all the time.

Then I must say there is always hope, many new treatment regimes and combinations to try. I am not an expert but even when potentially failing with one drug does not mean it cannot be combined in another regime (although we try not to).

I will be taking your post and placing it in the MAIN FORUM so many can see it. We will try to get you the help you need and the answers you seek.

Wish I could ramble on a bit more but I have a headache and it gets hard on the old eyeballs.

Keep us posted with yourself, there are many wonderful people that will be helping and routing you on. Best of luck and we will speak soon, Cheryl.>>Believe51
__________________

9/7/06Husband 50yrs=Stage IV IBC/HER2+ w/BoneMets 10/06Taxotere(10),Herceptin(1x wk), Zometa,Tamoxifen 4/12/07Last Taxotere; (Her,Zom,Tam) 5/18/07Pet=rapid cell activity, no organ mets, many Lytic Lesions(L4,Humeral Head,C2,DiscSpace)-Degenerative Changes, some bone repair 5/07Chemo fail 6/01/07Pleural Thoracentisis=Effusions, no malignant cells 6/19/07+7/2/07DFCI 6/25/07Brain MRI=Brain Mets, many-(5-9mm) 7/10/07WBR/Pelvis rads(37.5G x15) & Nutritionist 8/19/07Tykerb/Xeloda9/20/07BrainMRI=2 mets(2 mm)10/6/07Pet=Bone Progression10/24/07Chemo fail11/9/07A/C(10), end Tamoxifen 12/7/07Faslodex 12/10/07Muga 75 12/13/07Blastic Lesions 1/7/08Brain MRI=Clear 4/1/08Petscan=Bone Improvement, no progression, stable! 4/7/08Brain PERFECT 5/16/08Last A/C(10)8/26/08Brain Mets Again=10(all under 9mm) 9/10/08GAMMA KNIFE~take that!~10/30/08 One New Met=5mm! Uggh!~10 Others Are Gone!

Today, 03:55 PM #3 chrisy

Senior Member

Join Date: Sep 2005

Location: Central Coast, CA Tiptoe & Tex at the Santa Cruz Beach Boardwalk

Posts: 1,547

Hi Cheryl,

What you are hearing is correct, you have "done" it.

I'm not real clear on what stage your cancer was, but it sounds as if you have had all the treatment that would be considered "standard of care" as adjuvant treatment. You should specifically recheck the stat on recurrence - 50/50 seems incorrect, way too high particularly having no positive nodes prior to the surgery.

There is a statistic on adjuvant use of Herceptin which is that getting herceptin reduces your chance of recurrence by 50% compared to not getting Herceptin. So if your chance of recurrence before Herceptin would have been 20%, you reduce that to 10% if you get Herceptin. Maybe what you heard was a mixed up version of reducing your risk by 50%.

I think the recurrence stat was not clearly communicated to you.

At any rate, it is not standard of care to have any treatment beyond what you have had, although some ladies here who were diagnosed with Stage III and at high risk for recurrence have been able to extend their time on Herceptin and/or get Tykerb. Tykerb is not FDA approved for early stage bc, so this would be a challenge.

First, my suggestion is to get clarity on your staging and recurrence risk.

__________________

Chris in Scotts Valley

Diag 6/02 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node)

Mastectomy/implant - no chemo, rads. "cured?"

Diag 9/04 extensive (hate that word!) liver mets (!) ER/PR- Her2+++

10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!

04/05 - 4/07 Herception every 3 wks, stable <.5mm "area of interest" , not thought to be cancer.

04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial

06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin

01/08 Progression

02/08 Trastuzumab-MCC-DM1 trial 8/08 - "it's working"

12-05-2008, 02:14 PM	#1
Believe51 Senior Member Join Date: Jun 2007 Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE Posts: 3,000	New Member Seeks Help cullenhill@earthlink.net Guest Posts: n/a What to do now? Just wondering, when can someone start Tykerb. Is this only taken after there's a reaccurrance. I was dianosed in Aug.2007, age 43, Ivasive Ductial Carcinoma, poorly Differentiated. ER/PR-, HER2+ gene amplification with a HER217Z1 ratio of 12.0, node positive. I had 4 rounds TAC, weekly Herceptin. Bilateral mastectomy Dec. 11,2007. Residual minute foci of Invasive Ductal Carcinoma, Nodes showed no evidence of malignancy, at surgery. Jan.2008 started Taxol, continued weekly Herceptin, 35 radiation treatments. I should be finished with Herceptin in Jan. 2009. I have asked 2 oncologist, and my nurse if I could take anything else, they all say no. One onc. told me if I had a reaccuuance I needed to come to his cancer center and see their BC oncologist. (Since June 2008 we have not had a regular onc!!!) I have read that Tykerb sometimes is given after one finishes Herceptin. Anyway I am ready to finish with treatments, been weekly since Aug. 2007. But am really scared not to be doing something to keep this at bay. One onc. I saw said there was a 50/50 chance of reaccurrance. HELP! If any one has any advice please let me know. Cheryl cullenhill@earthlink.net Today, 03:53 PM #2 Believe51 Senior Member Join Date: Jun 2007 Location: RI State Motto "HOPE"<<>> 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE Posts: 1,266 Hello Cheryl Welcome to our family, so glad you found us but sad that you had to. First off I was wondering if you could let us know a little more about yourself so others could help better. Few things.....let no one tell you what your chances are (re:50/50), we break the rules and stats all the time. Then I must say there is always hope, many new treatment regimes and combinations to try. I am not an expert but even when potentially failing with one drug does not mean it cannot be combined in another regime (although we try not to). I will be taking your post and placing it in the MAIN FORUM so many can see it. We will try to get you the help you need and the answers you seek. Wish I could ramble on a bit more but I have a headache and it gets hard on the old eyeballs. Keep us posted with yourself, there are many wonderful people that will be helping and routing you on. Best of luck and we will speak soon, Cheryl.>>Believe51 __________________ 9/7/06Husband 50yrs=Stage IV IBC/HER2+ w/BoneMets 10/06Taxotere(10),Herceptin(1x wk), Zometa,Tamoxifen 4/12/07Last Taxotere; (Her,Zom,Tam) 5/18/07Pet=rapid cell activity, no organ mets, many Lytic Lesions(L4,Humeral Head,C2,DiscSpace)-Degenerative Changes, some bone repair 5/07Chemo fail 6/01/07Pleural Thoracentisis=Effusions, no malignant cells 6/19/07+7/2/07DFCI 6/25/07Brain MRI=Brain Mets, many-(5-9mm) 7/10/07WBR/Pelvis rads(37.5G x15) & Nutritionist 8/19/07Tykerb/Xeloda9/20/07BrainMRI=2 mets(2 mm)10/6/07Pet=Bone Progression10/24/07Chemo fail11/9/07A/C(10), end Tamoxifen 12/7/07Faslodex 12/10/07Muga 75 12/13/07Blastic Lesions 1/7/08Brain MRI=Clear 4/1/08Petscan=Bone Improvement, no progression, stable! 4/7/08Brain PERFECT 5/16/08Last A/C(10)8/26/08Brain Mets Again=10(all under 9mm) 9/10/08GAMMA KNIFE~take that!~10/30/08 One New Met=5mm! Uggh!~10 Others Are Gone! Today, 03:55 PM #3 chrisy Senior Member Join Date: Sep 2005 Location: Central Coast, CA Tiptoe & Tex at the Santa Cruz Beach Boardwalk Posts: 1,547 Hi Cheryl, What you are hearing is correct, you have "done" it. I'm not real clear on what stage your cancer was, but it sounds as if you have had all the treatment that would be considered "standard of care" as adjuvant treatment. You should specifically recheck the stat on recurrence - 50/50 seems incorrect, way too high particularly having no positive nodes prior to the surgery. There is a statistic on adjuvant use of Herceptin which is that getting herceptin reduces your chance of recurrence by 50% compared to not getting Herceptin. So if your chance of recurrence before Herceptin would have been 20%, you reduce that to 10% if you get Herceptin. Maybe what you heard was a mixed up version of reducing your risk by 50%. I think the recurrence stat was not clearly communicated to you. At any rate, it is not standard of care to have any treatment beyond what you have had, although some ladies here who were diagnosed with Stage III and at high risk for recurrence have been able to extend their time on Herceptin and/or get Tykerb. Tykerb is not FDA approved for early stage bc, so this would be a challenge. First, my suggestion is to get clarity on your staging and recurrence risk. __________________ Chris in Scotts Valley Diag 6/02 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?" Diag 9/04 extensive (hate that word!) liver mets (!) ER/PR- Her2+++ 10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response! 04/05 - 4/07 Herception every 3 wks, stable <.5mm "area of interest" , not thought to be cancer. 04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial 06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin 01/08 Progression 02/08 Trastuzumab-MCC-DM1 trial 8/08 - "it's working" __________________ 9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI 6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression 10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement, NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5 12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!