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Old 05-28-2010, 04:38 PM   #21
Nancy L
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Re: Please let me know what you think i should do next

Lani

Tried to send you a private e-mail to answer your questions but I couldn't find an address. So everyone else, please excuse me using this thread to reach Lani.

I have always felt there was some connection between my sister's BC and mine. When I was diagnosed, Dr. Rugo told me it probably was some gene they have discovered yet coming down from my father's side. He died of prostate cancer. I wonder if my sister was always HER2 positive and if perhaps I was ER/PR positive and my tumor changed to negative before diagnosis. The erie thing for me about my sister, father and me is that we were all diagnosed very late stage even though we had all the typical screening tests on a regular basis, visited our physicians because we had other symptoms and none of us were detected by those screens or exams. For example, my sister had a mammo six months prior to diagnosis and mine was 10 months prior to diagnosis. My sister and I had almost identical size tumors and the same number of positive nodes---very odd.

I would consider paying to have my sister and my father's tumors tested using current science but I wouldn't know how to go about making it happen. I do believe there are answers to be found in families like mine, but as you said, there is no money in it for the drug companies. Maybe a Phd candidate will be curious enough to study this kind of situation in the future.

Oh, I asked Dr. Slamon if Her2 is inherited and he told me NO.

My sister's BC info is as follows:
Willie----Age 47 at diagnosis/died at age 54 (2002)
Pre menopausal

Stage III ductal carcinoma in situ of the left breast.(7x5x4 cm tumor with 11 of 18 lymph nodes positive)

Estrogen/Progesterone Receptor positive

Her2neu negative at diagnosis by a test they don't use anymore---unreliable I am told. When diagnosed metastatic, they tested the tumor removed from her liver and it came back Her2Neu positive using the FISH test. But as I said, they believed the second test was wrong rather than the first one.

My history

Age at diagnosis--57 (8/2004)

Post menopausal

Stage IIIC focal high-grade ductal carcinoma in situ of the left breast with invasive component (7x5x3cm tumor with 11 of 11 tested lymph nodes positive for metastatic carcinoma with extranodal spread).

Estrogen/Progestrerone Receptor negative
Her2neu positive by FISH (HER217Z1 ratio of 4.03)
CT post surgery identified a single prominent left axillary/subpectoral lymph node measuring 11 mm.
Ki-67 staining was 70%
TNM Staging: pT3pN3pMX
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Old 05-28-2010, 04:47 PM   #22
Lani
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Re: Please let me know what you think i should do next

Thanks Nancy. I will keep asking those here (I think I once started a thread asking if any had relatives with bc who were her2+ as well, but noone answered.

In the last 24 hours I have asked you and another on the board, so if this keeps up, maybe there will be enough for some PhD candidate to become interested in(funding, now that is another story!)

I will post the abstract of the article about the X-linked her2+ breast cancer for your interest.
CELL
Volume 129, Issue 7, 29 June 2007, Pages 1275-1286
doi:10.1016/j.cell.2007.04.034
Article


FOXP3 Is an X-Linked Breast Cancer Suppressor Gene and an Important Repressor of the HER-2/ErbB2 Oncogene
Tao Zuo2, Lizhong Wang1, Carl Morrison3, Xing Chang1, Huiming Zhang1, Weiquan Li1, Yan Liu1, Yin Wang1, Xingluo Liu3, Michael W.Y. Chan2, Jin-Qing Liu3, Richard Love4, Chang-gong Liu2, Virginia Godfrey5, Rulong Shen3, Tim H.-M. Huang2, Tianyu Yang3, Bae Keun Park6, Cun-Yu Wang6, Pan Zheng1, , and Yang Liu1, ,
1Division of Immunotherapy, Section of General Surgery, Department of Surgery, Comprehensive Cancer Center, and Program of Molecular Mechanisms of Disease, University of Michigan, Ann Arbor, MI 48109, USA
2Program in Molecular, Cellular, and Developmental Biology and Department of Molecular Virology, Immunology, and Medical Genetics, Ohio State University Medical Center and Comprehensive Cancer Center, Columbus, OH 43210, USA
3Department of Pathology, Ohio State University Medical Center and Comprehensive Cancer Center, Columbus, OH 43210, USA
4Department of Internal Medicine, Ohio State University Medical Center and Comprehensive Cancer Center, Columbus, OH 43210, USA
5Department of Pathology, University of North Carolina, Chapel Hill, NC 27599, USA
6Laboratory of Molecular Signaling and Apoptosis, Department of Biologic and Materials Sciences, School of Dentistry, University of Michigan, Ann Arbor, MI 48109, USA Received 6 July 2006; revised 12 September 2006; accepted 10 April 2007. Published online: June 14, 2007. Available online 14 June 2007.

SUMMARY
The X-linked Foxp3 is a member of the forkhead/ winged helix transcription factor family. Germ- line mutations cause lethal autoimmune dis- eases in males. Serendipitously, we observed that female mice heterozygous for the ‘‘scurfin’’ mutation of the Foxp3 gene (Foxp3sf/+) devel- oped cancer at a high rate. The majority of the cancers were mammary carcinomas in which the wild-type Foxp3 allele was inactivated and HER-2/ErbB2 was overexpressed. Foxp3 bound and repressed the HER-2/ErbB2 promoter. Dele- tion, functionally significant somatic mutations, and downregulation of the FOXP3 gene were commonly found in human breast cancer sam- ples and correlated significantly with HER-2/ ErbB2 overexpression, regardless of the status of HER-2 amplification. Our data demonstrate that FOXP3 is an X-linked breast cancer sup- pressor gene and an important regulator of the HER-2/ErbB2 oncogene.

When a male inherits an X chromosome affected by this FOX-P3 mutation, they can die in utero or be born with severe immunodeficiency with a named syndrome, IPEX., so I doubt this is what caused your father's prostate cancer. Interestingly they contrast her2 overexpression and her2 amplification perhaps part of the problem as to why your sister's her2 status results were inconsistant. By the way, one of the ways ER+her2- tumors excape antihormonal treatment is by becoming her2+ which also might be what happened to your sister. There are so many possibilities.

Thanks for all the info!
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Old 05-29-2010, 09:39 AM   #23
Christine MH-UK
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Re: Please let me know what you think i should do next

Hello Fullofbeans,

If you are not being treated at Royal Marsden, I would recommend that you get a referral there, since they seem to have a much more expertise and ways of getting things than other places do.

Best wishes,

Christine
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Old 05-30-2010, 07:36 AM   #24
fullofbeans
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Re: Please let me know what you think i should do next

Thank you all for your values info.

Basically now I want tykerb (now) whirslt i am looking at long term options.

How much and how do you get it in the UK?? does anyone knows ellie have you ever found out that info?
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 06-05-2010, 09:25 AM   #25
Christine MH-UK
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Re: Please let me know what you think i should do next

You could try to go private, but it might be expensive if you are not a patient. The local BUPA hospital wanted 60,000 from me for a year of herceptin before it was on the NHS, partly because they were billing for my oncologist, even though he was donating his time to his 'highest-risk her2-positive patient.' If you could get it privately through something like healthcare at home, it would be cheaper (since they administer outside of a hospital, they don't need to pay VAT).

Another option might be to look into trials via http://www.clinicaltrials.gov, which should have all of the GSK trials in Britain, since the company has publicly committed itself to putting all of its trials into this database, as well as some others.

There is a Genentech trial, for example, in which participants get either T-DM1 or Capecitabine + Lapatinib
http://www.clinicaltrials.gov/ct2/sh...U%3AGB&rank=17
There are, of course, participation criteria, but it might be worth considering since these two options both seem very good.
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Old 06-07-2010, 07:22 AM   #26
Nancy L
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Re: Please let me know what you think i should do next

Couldn't help posting this followup to my previous post. The below report from ASCO confirms what I said about my sisters liver mets---they were Her2 positive but the oncs refused to believe the second test could be right. Getting a biopsy on reoccurence is very important to make sure you are getting drugs that will really help you.

"- Breast Cancers that Spread to the Liver May Change Biology, Impacting Treatment Effectiveness: A retrospective study of women with metastatic breast cancer showed that the biological characteristics of their primary tumors - including estrogen, progesterone, and HER2 status - often changes when the cancer spread to the liver, requiring a change in therapy for many women. "
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Old 06-07-2010, 08:41 AM   #27
Rich66
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Re: Please let me know what you think i should do next

"the oncs refused to believe the second test could be right.
Really? How long ago was that?
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Mom's treatment history (link)
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Old 06-07-2010, 08:58 AM   #28
Nancy L
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Re: Please let me know what you think i should do next

This was nine years ago when they didn't know tumors could change characteristics. And my sister was a patient at UCLA and Cedar Sinai. I would be willing to bet money many general oncologists don't know this today. Otherwise, why would they start treatment without all the markers reevaluated?
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Old 06-07-2010, 11:26 AM   #29
Missyw
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Re: Please let me know what you think i should do next

Hi Full of Beans,

I was so sorry to hear your news. I know how hard it is, but you can get through it. I think it is wise to contact Drs. Salazar and Disis. They may be able to offer some additional suggestions. They told us once we were patients, we are always patients. At least it is another opinion that could prove helpful. Don't forget, you responded really well the first time; that's a great indicator that you will respond well again! Hugs to you.-
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Missy W.

Diagnosed 1/06; Her-2, er/pr+
lumpectomy
4 Rounds A/C
tiny area of interest in liver - watching
12 rounds of Taxol w/ Herceptin
tiny area cleared - Stage IV (because area responded to chemo)
Herceptin weekly
27 rounds radiation
NED 8/06
10/06 oopherectomy
Arimidex
1/07-7/07 Vaccine Trial - UW Seattle
3/09 liver met back
3/09 Navelbine, Herceptin Aromasin
6/09 Liver Resection
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Old 06-07-2010, 04:07 PM   #30
fullofbeans
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Re: Please let me know what you think i should do next

Hi all,

Sorry for not giving news it had been full time here trying to get a plan into action, full time and I have been rather wired and obsessed with trying to find a solutio and devote most of my time to it and when I take a break I want to stay away from the computer, but thank you for being there.

First thing was going trying to get NED by radiotherapy and radiotherapy but the breast nodes have increased by the time they did the scan for radiotherapy and I think I may have felt another node starting (I am getting pretty good at it) so back on chemo instead, it makes sense (Taxol weekly)..

I was trying the avoid chemo to keep my immune system in good shape and have been also wanting to add tykerb and go on a patient prog but have to wait two weeks for the answer so I want to pay for the two weeks and see, just giving me time to think. I am also on maintenance Herceptin.

Thanks for the link christine and thanks for all the good wishes from everyone (missy we bothe recurred at 3.5 years). I have not lost hope and I am determined that is all I can tell you, and that is good news already.

Much love
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama

Last edited by fullofbeans; 06-07-2010 at 04:13 PM..
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