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Old 10-03-2007, 01:00 PM   #1
Daisypink
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Join Date: Jun 2007
Location: Staffordshire, England
Posts: 22
Can anyone help?

Hi

I am 33 years old and i live in England. We seem to be so far behind over here with access to new drugs, i wanted to ask your help as i am feeling so desparate and scared..

I have lung secondaries and i have just had the Tykerb/Xeloda trial stopped as it has failed to work for me.

My oncologist referred me to the top cancer hospital here in the Uk - the Royal Marsden to see if they could suggest any new drugs/trials that may help me as every chemo/hormonal seems to have failed for me so far. the Marsden couldnt help so i am desparate to know if there are other drugs there in the states that i could try to get.

I am willing to pay and travel to the states, does anyone know if this is possible? Where would be the best place to contact over there?

I am so desperate to live.. i dont want to die.. i feel i have too much in life to do, please, please can anyone help me by suggesting anything?

much love to all you fighting this dreadful disease.

Any help would be appreciated

Love

jakki
xxxx
__________________
Jakki
-xx-

DX May 2005 grade 3 IDC - partial mastectomy/immediate LD Recon. 0 /20 lymph nodes affected
Er+PR+HER2-
E-CMF chemo July 05 - Feb 06, 33 x rads. Tamoxifen
June 06 - Regional Reccurrence - supraclavicular lymph nodes, HER2+. Taxotere chemo Aug 06 - Dec 06, 25 x rads, Arimidex, zoladex, Herceptin.
Feb 07 - further supraclavicular progression, re-staging tests.
April 07 - Lung mets DX, oncologist trying to get me on Tykerb & xeloda on LEAP trial.
June 07 - Lung mets doubled in size, 3 new tumours and one in my back - commenced Tykerb/Xeloda - Zoladex & Arimidex stopped.
September 07 - Tykerb/Xeloda failed.. lung mets still growing and more new ones
October 2007 - Commenced Vinorelbine and back on Herceptin again..
March 2008 - New Scans reveal lung mets still progressing, now have 3cm Liver Met and Bone Met to Sternum - looking for a new clinical trial...
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Old 10-03-2007, 08:58 PM   #2
lilyecuadorian
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Join Date: Mar 2007
Location: CHARLOTTE NC USA Home town (ECUADOR) South America
Posts: 542
there is many more drogs I hear navelbine,to manys just wait one of our sister is going to read this post and they will post some ideas for you hang in there ...all my prayers on your way ...I wish that I can recomend something but I dont have that much experience like some sister on this site ...
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 10-03-2007, 09:01 PM   #3
tousled1
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Location: Acworth, GA
Posts: 2,104
I have lung mets and am on Taxol and Carboplatin - weekly with 3 weeks on and one week off. In addition I'm getting Herceptin weekly. So far it seems to be working. There are also women who have been on Herceptin and Navelbine for lung mets with good results. You still have many options to try. Don't give up.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 10-04-2007, 09:58 AM   #4
Julie2
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Join Date: Sep 2005
Posts: 556
Please post this on main her2group forum. Many people will respond.
I am on Nabelbine and Herceptin for recurrence to chest nodes. It seems like working.

Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 10-05-2007, 01:08 AM   #5
Daisypink
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Join Date: Jun 2007
Location: Staffordshire, England
Posts: 22
Thank you Lily, kate and Julie for your replies...

I have posted on the main HER2 forum in the hope of many reponses..

thank you and take care

Love jakki
xxxx
__________________
Jakki
-xx-

DX May 2005 grade 3 IDC - partial mastectomy/immediate LD Recon. 0 /20 lymph nodes affected
Er+PR+HER2-
E-CMF chemo July 05 - Feb 06, 33 x rads. Tamoxifen
June 06 - Regional Reccurrence - supraclavicular lymph nodes, HER2+. Taxotere chemo Aug 06 - Dec 06, 25 x rads, Arimidex, zoladex, Herceptin.
Feb 07 - further supraclavicular progression, re-staging tests.
April 07 - Lung mets DX, oncologist trying to get me on Tykerb & xeloda on LEAP trial.
June 07 - Lung mets doubled in size, 3 new tumours and one in my back - commenced Tykerb/Xeloda - Zoladex & Arimidex stopped.
September 07 - Tykerb/Xeloda failed.. lung mets still growing and more new ones
October 2007 - Commenced Vinorelbine and back on Herceptin again..
March 2008 - New Scans reveal lung mets still progressing, now have 3cm Liver Met and Bone Met to Sternum - looking for a new clinical trial...
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Old 10-06-2007, 06:19 AM   #6
gin-tx
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Join Date: Jul 2006
Posts: 146
There are wonderful cancer hospitals in US, MD Anderson in Houston, TX, Sloan Kettering which I think is in NY, and others. Ask your dr to recommend a place if you want to come to US for treatment.

hugs,
ginkott1@aol.com
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Old 10-06-2007, 04:24 PM   #7
GemmaG
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Location: Bergenfield, NJ
Posts: 121
HI Jakki,
The Tykerb/Xeloda combo didn't work for me. My onc have had me put back on Herceptin and added Navelbine on a weekly basis. I've had two treatments so far. I didn't get an infusion yesterday because my blood count was too low :-(

I live in New Jersey. I think I'm in a good hands with my onc. Send me a message if you want info about the cancer center here.

You'll be in my prayers. And we'll all beat this dreadful disease.

Hugs,
Gemma
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Old 10-08-2007, 01:45 AM   #8
Daisypink
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Join Date: Jun 2007
Location: Staffordshire, England
Posts: 22
Hi there

Thank so much for the info you guys have all replied with.. i see my onoclogist today so i will go armed with a wealth of info.

yes, i'd love to know aboutthe clinic you are being treated at Gemma, i am just going to have a look on the Slaone Kettering Site to see how you get an appointment and at what cost?

Thanks and much love to you all

Jakki
xxxx
__________________
Jakki
-xx-

DX May 2005 grade 3 IDC - partial mastectomy/immediate LD Recon. 0 /20 lymph nodes affected
Er+PR+HER2-
E-CMF chemo July 05 - Feb 06, 33 x rads. Tamoxifen
June 06 - Regional Reccurrence - supraclavicular lymph nodes, HER2+. Taxotere chemo Aug 06 - Dec 06, 25 x rads, Arimidex, zoladex, Herceptin.
Feb 07 - further supraclavicular progression, re-staging tests.
April 07 - Lung mets DX, oncologist trying to get me on Tykerb & xeloda on LEAP trial.
June 07 - Lung mets doubled in size, 3 new tumours and one in my back - commenced Tykerb/Xeloda - Zoladex & Arimidex stopped.
September 07 - Tykerb/Xeloda failed.. lung mets still growing and more new ones
October 2007 - Commenced Vinorelbine and back on Herceptin again..
March 2008 - New Scans reveal lung mets still progressing, now have 3cm Liver Met and Bone Met to Sternum - looking for a new clinical trial...
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