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Old 12-13-2009, 07:22 PM   #1
vlcarr
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Clinical Trial for newly diagnosed -any others?

I'm looking for anyone who did the clinical trial I did for newly diagnosed women with HER2 - Herceptin/Tykerb.

The purpose of my trial was to see if this combo would shrink tumors. The trial lasted for 3 months and was weekly Herceptin and 4 Tykerb daily. I know I was the first patient at Vanderbilt to do this trial but I understand Baylor University has the most.

The benefits of this trial could be to avoid a mastectomy which was not the case for me but was told that at the beginning. The other benefit could be to avoid chemo.

I agreed to do the trial but only if I could receive chemo. I was not as well informed about HER2 as am I now and made this decision because the trial was so new and there was no long term information on what the impact could be of foregoing chemo. In addition, I have a friend who's father is a surgeon at a reputable hospital in another state. I faxed all the information on the trial and he consulted with breast cancer specialists there and that was the advice he would give his own daughter so that is what I went with. I was so overwhelmed I just wanted someone to tell me what to do.

I don't know if that was the right choice but I'm not going to second guess myself at this point.

I see a lot of posts regarding this combo with mets but was curious as to if there are any of you who did the same trial I did. If so,

--When did you complete the trial?
--What were your results?
--How are you doing?
--Did you receive chemo or did you do the Herceptin/Tykerb only?

Thanks so much.
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Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 12-16-2009, 07:11 PM   #2
Jackie07
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Re: Clinical Trial for newly diagnosed -any others?

Bumping this one up.
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Old 01-30-2010, 03:39 PM   #3
cecw@mchsi.com
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Smile Re: Clinical Trial for newly diagnosed -any others?

I started altto trial[ diff combinations of tykerb+herceptin as first line tx after diagnosis] may 09 after r mast 2-10-09. For the trail you do chemo first then you're combo draw. I drew tykerb 1500mg dly for 1 year. So far results unknown. Anyone else out there on trial or with any results? Best Cec!!
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Old 07-01-2010, 01:17 AM   #4
Liaidarutrica
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Clinical Trial for newly diagnosed any others

hello to all of you had new on the clinical trial of dr huang on the combination of cells Schwann OEG? guerdener
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Old 07-01-2010, 06:23 AM   #5
Delaney
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Unhappy Re: Clinical Trial for newly diagnosed -any others?

I did the Altto trial after chemo and mastectomy. Got tyverb only for 1 yr. Cancer came back as soon as I stopped tyverb. Really wish I had had herceptin instead.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 10-10-2010, 04:51 AM   #6
msleslie
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Re: Clinical Trial for newly diagnosed -any others?

I'm currently in arm 4 of the ALTTO trial which means taxotere, caroboplatin, & herceptin taken with Tykerb (3pills / 750mg) daily.
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6/14/2010 - Self discovered Lump; Age 39
6/24/2010 - Biopsy results confirm breast cancer
Right breast, invasive ductal adenocarcinoma
HER2neu positive, BRAC I & II negative
7/8/2010 - Lumpectomy right breast, sentinel lymph node biopsy, & port-a-cath installed on left
Stage II, Size 3.2cm, Clear Nodes, Clear Margins
8/19/2010 - Chemo begins - Taxotere, Carboplatin, Herceptin & Tykerb all simulanteously; ALTTO trial arm 4
9/9/2010 - Chemo dose #2
9/30/2010 - Chemo dose#3
10/21/2010 - Chemo dose#4
11/11/2010 - Chemo dose#5
12/02/1010 - Chemo dose #6 - WooHoo, it is complete!
12/14/2010 - Simulation & Planning session for radiation
02/18/2011 - Completed radiation treatment (33 rounds)
08/04/2011 - Completed Herceptin & Tykerb
09/30/2013 - ultrasound guided biopsy (following annual MRI)
10/1/2013 - new cancer in left breast. 6mm discovered via MRI
10/28/2013 - bilateral mastectomy - no reconstruction
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