can anyone help?

Daisypink · 10-05-2007, 01:05 AM

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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 - waiting for the next option.. very very scared..

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Becky · 10-05-2007, 03:35 AM

You have not tried one of the most powerful drugs against metastatic disease (especially in combination with Herceptin). You have not tried a taxane - different names include Taxol, Taxotere or Abraxane (unless you forgot about them). You also have not tried Navelbine or Gemzar. Ask your oncologist today!!

Otherwise, there is Sloane Kettering in NYC or Dana Farber in Boston or Fox Chase (Dr. Lori Goldberg) in Philadelphia.

Do not give up as there are more chemos out there and they are better drugs than what you have been on. Taxotere, Carboplatin plus Herceptin is a GREAT Combo.

Keep asking questions there and here and if willing, come to the USA.

Christine MH-UK · 10-05-2007, 03:59 AM

You might try talking to Cancer Baccup to see if they have any advice on getting cancer drugs on what is called a named patient basis. After hearing that the saintly Jane Tomlinson couldn't get Tykerb I was disgusted enough to do some checking and it seems like Tykerb has not yet received its EMEA licence yet and since new drug introduction is very slow and methodical in Britain, NICE as of July hadn't even set a time to begin the evaluation process. But I once met a cancer patient who had Iressa on a named patient basis and Iressa never received EMEA approval, so this might be a possibility [The patient was a non-smoking lung cancer patient and I think that Iressa had problems because of side effects and because the retrospective results showed that only never smokers and perhaps Asians benefitted and the trial wasn't set up right to deal with this]. The EMEA received the tykerb application nearly a year ago, so it should get its thumb out.

This whole issue is likely to heat up now that the Tomlinson family is raising the issue.

I know that some oncologists are using carboplatin for mets, but HCT isn't used much because the regime wasn't licenced (this is one of the big differences with the US, where drugs are licenced but can be much more freely used in different combinations afterwards).

Best of luck,

Christine

Sheila · 10-05-2007, 04:19 AM

Jakki
I am having great response with Herceptin, Taxol and Avastin for the supraclavicular nodes....I also have a friend who is on Navelbine and Herceptin for the same....like Becky said, I would try a taxane....and maybe add Avastin to the mix which is a new monoclonal antibody that blocks blood supply to the tumor.
Sending you prayers across the big pond.

PinkGirl · 10-05-2007, 07:00 AM

Jakki did have taxotere. Did you guys mean she should try it again???

Becky · 10-05-2007, 07:28 AM

I did see that later. She could try Taxol with or without Navelbine and in combo with Herceptin. It didn't seem like she took the Taxotere with Herceptin but rather had them sequentially versus concurrently (concurrent is better)

Lani · 10-05-2007, 09:38 AM

consult Martine J Piccart-Gebhart, MD, PhD
Head, Medicine Department
Breast International Group
Chair, Medical Oncology Clinic
Jules Bordet Institute
Brussels, Belgium

She is head of the entire HERA trial--which were the herceptin adjuvant trials in all world locations except North America. She speaks widely on metastatic her2+ bc as does Edith Perez, who is with the Mayo Clinic, Jacksonville Florida Branch, who was head of the North American adjuvant herceptin trials and is the most frequent speaker at conferences on the treatment of metastatic her2+ disease.

At San Antonio last year I was terribly impressed by Jenny Chang of Texas (I think Baylor rather than MD Anderson) who was chosen to speak on all that was new in the treatment of metastatic her2+ bc and discussed many things not yet published.

MD Anderson with lots of top doctors and doing incredible amounts of research on breast cancer only does consultations if the patient promises to receive all their treatment there and that may prove impractical (time, money and otherwise for you)

Mark Pegram just left UCLA for the University of Miami Cancer Center (I believe that is what it is called, I know it is in Miami). He and Dr. Slamon developed herceptin and did the early work and he started the trials of herceptin with avastin.

Dr. Slamon is harder to see as he travels a lot would then also therefore tend to be less involved in the day to day care of patients, although Jean
here saw him and had him direct her care back on the East Coast.

There are a lot of new treatments and combinations already being tested and scores more just coming up. If you are getting panicky, just put my name in search and see that I submit scores and scores of abstracts and news items just to keep the board informed of what is new and in the hope of providing ammunition and just that--hope.

Noone can promise you that one of these will necessarily prove to be YOUR CURE, but I think those on this board can reassure you that there are many more left to try.

The dogma taught to oncologists has tended to be that all Stage IV breast cancer patients are dead in two years or so, so just give them something to make them comfortable. I think many people on this board have proven them wrong, led productive and meaningful lives and some are going on 8 or 10 years and have brought up their children and some even seen grandchildren.

About a week ago I posted a link to a wonderful video...it was a grand rounds given at Stanford about lymphoma where a patient who happened to be a doctor was presented. She not only survived when all Doctors told her there was nothing really left to try with any likelihood of working, but survived to see her small children graduate high school, enter college. I believe she is now at 18 years of survival and she has used this time to write many books on cancer decisionmaking, survivorship etc for the layman. I would recommend searching for my posting, watching the video(certainly the second half) and perhaps seeking out her books.

I have no experience with chemos as many of these fine ladies do, and I am certain they will help you tremendously with their first-hand knowledge...but remember to try to gather up scientific information as your ammunition
and source of hope, remembering it may be helpful to seek out nature, music and art for solace.

I recently made up the following: The arts make living worthwhile, but science may save your life!

Hope some of this helps

Lani · 10-05-2007, 09:41 AM

Google "breast cancer update" an audio journal where they, and other oncologists specializing in breast cancer, are frequently interviewed and you can listen to individual audiotapes of their responses to questions. Remember their answers change every year as knowledge progresses, so their answer one or two years ago may not be their answer now.

Lani · 10-05-2007, 10:13 AM

1: Biomed Pharmacother. 2007 Sep 12; [Epub ahead of print]
Paclitaxel albumin-bound particles (abraxanetrade mark) in combination with bevacizumab with or without gemcitabine: Early experience at the University of Miami/Braman Family Breast Cancer Institute.

Lobo C, Lopes G, Silva O, Gluck S.
Division of Hematology/Oncology, Braman Family Breast Cancer Institute, UMSylvester Comprehensive Cancer Center, University of Miami, Miller School of Medicine, 1475 NW 12th Avenue, Suite 3510, Miami, FL 33136, USA; Florida Cancer Specialists, Port Charlotte, FL, USA.
BACKGROUND: Paclitaxel albumin-bound particles (nab-paclitaxel, ABRAXANEtrade mark) (nab-P) improve outcomes when compared against single agent cremophor-based paclitaxel, as do the addition of bevacizumab (B) or gemcitabine (G) to the same agent. There are no available data regarding combinations of nab-P with B and/or G. Ongoing investigational efforts are evaluating various doublets with these agents, but, to the best of our knowledge, not all 3 of them in the same regimen. All drugs are currently FDA-approved in the treatment of cancer. METHODS: Review of single-institution experience, evaluating safety and preliminary evidence of activity with the use of nab-P and B with and without G in heavily pretreated her2neu-negative metastatic breast cancer patients. Assessment of response was undertaken by the investigators independently of treating physician. RECIST criteria were used. RESULTS: Six women have been evaluated. Three patients received nab-P and B at the following doses: nab-P 100mg/m(2), B 10mg/kg and 3 patients also received G at 1000mg/m(2); all 3 drugs were given every 2 weeks. Median age was 51 (range, 34-69). Two patients had hormone-receptor positive disease and 3 had ER/PR/her2neu-negative cancer. Median prior number of regimens was 3 (range, 2-7). Five patients had been previously treated with a taxane. One received both paclitaxel and docetaxel, and 4 received docetaxel only. A median of 16 weeks of treatment has been administered (range 8+-32+). First-cycle grade 3/4 toxicity was seen in only one patient who had a baseline grade 2 thrombocytopenia that progressed to grade 3. The thrombocytopenia resolved without transfusion or hemorrhagic complication. Other treatment related toxicities were as follows: grade 2 peripheral neuropathy, 1 patient; grade 2 nausea, 1 patient. One patient had a blood pressure of 210/140mmHg while non-compliant with her prior anti-hypertensive therapy. Two patients had confirmed partial responses and 4 patients had stable disease. CONCLUSION: These very preliminary data suggest that nab-P in combination with B with and without G is a safe regimen and a formal phase II trial has been developed at the University of Miami to confirm its safety and clinical activity.
PMID: 17913443 [PubMed - as supplied by publisher]

Lani · 10-05-2007, 10:29 AM

I have posted this several times before--but it is always good for generating hope!
http://jnci.oxfordjournals.org/cgi/c.../full/99/9/694
J Natl Cancer Inst. 2007 May 2;99(9):694-705. Links
Treatment of human epidermal growth factor receptor 2-overexpressing breast cancer xenografts with multiagent HER-targeted therapy.

Arpino G, Gutierrez C, Weiss H, Rimawi M, Massarweh S, Bharwani L, De Placido S, Osborne CK, Schiff R.
Breast Center, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77030, USA.
BACKGROUND: Human epidermal growth factor receptor 2 (HER2) is a member of the HER signaling pathway. HER inhibitors partially block HER signaling and tumor growth in preclinical breast cancer models. We investigated whether blockade of all HER homo- and heterodimer pairs by combined treatment with several inhibitors could more effectively inhibit tumor growth in such models. METHODS: Mice carrying xenograft tumors of HER2-overexpressing MCF7/HER2-18 (HER2-transfected) or BT474 (HER2-amplified) cells were treated with estrogen supplementation or estrogen withdrawal, alone or combined with tamoxifen. One to three HER inhibitors (pertuzumab, trastuzumab, or gefitinib) could also be added (n > or = 8 mice per group). Tumor volumes, HER signaling, and tumor cell proliferation and apoptosis were assessed. Results were analyzed with the t test or Wilcoxon rank sum test and survival analysis methods. All statistical tests were two-sided. RESULTS: Median time to tumor progression was 21 days for mice receiving estrogen and 28 days for mice receiving estrogen and pertuzumab (difference = 7 days; P = .001; hazard ratio [HR] of progression in mice receiving estrogen and pertuzumab versus mice receiving estrogen = 0.27, 95% confidence interval [CI] = 0.09 to 0.77). Addition of gefitinib and trastuzumab to estrogen and pertuzumab increased this time to 49 days (difference = 21 days; P = .004; HR of progression = 0.28, 95% CI = 0.10 to 0.76). MCF7/HER2-18 tumors disappeared completely and did not progress (for > or = 189 days) after combination treatment with pertuzumab, trastuzumab, and gefitinib plus tamoxifen (19 of 20 mice) or plus estrogen withdrawal (14 of 15 mice). Both combination treatments induced apoptosis and blocked HER signaling and proliferation in tumor cells better than any single agent or dual combination. All BT474 tumors treated with pertuzumab, trastuzumab, and gefitinib disappeared rapidly, regardless of endocrine therapy, and no tumor progression was observed for 232 days. CONCLUSION: Combined treatment with gefitinib, trastuzumab, and pertuzumab to block signals from all HER homo- and heterodimers inhibited growth of HER2-overexpressing xenografts statistically significantly better than single agents and dual combinations.
PMID: 17470737 [PubMed - indexed for MEDLINE]

hutchibk · 10-05-2007, 10:32 AM

Man this stuff is all happening so fast, I can't keep up with all of the new "-nib's" and "-mab's"!! I wish I could give all of the researchers a big hug!

Christine MH-UK · 10-05-2007, 11:35 AM

I sincerely apologise. I didn't get enough sleep, which was my own stupide fault, and completely misread message.

First ask about some combos you haven't had. Herceptin + navelbine has definitely been used by other NHS oncologists and it couldn't hurt to ask. There are some phase I trials for which you might qualify in the UK, but I didn't see anything with pertuzumab. See http://www.clinicaltrials.gov and enter united kingdom in the search engine.

Daisypink · 10-07-2007, 01:46 PM

wow! Thanks to all you ladies out there who responded.. its pretty late over here in the Uk and i'm really tired but first thing tomorrow i am going to print all this very use ful info out and google it.. i also have an oncology appt late afternoon so i willl be going armed with all your replies wanting some answers..

Much love to all you ladies..

Jakki
xxx

StillHere · 10-07-2007, 05:54 PM

Lani
Did you notice that Jakki is HER2 Neg?

sassy · 10-07-2007, 06:32 PM

June 06 regional recurrence shows HER2+.

StillHere · 10-07-2007, 07:13 PM

Ooooops, should not drink and post at the same time anyway. Sorry for doubting you. Karen

hutchibk · 10-07-2007, 07:20 PM

LOL - friends don't let friends drink and post...

tricia keegan · 10-08-2007, 01:09 PM

Hi, I just saw your post and it may not be relevant but I wanted to mention I met a lady here on the her2 site from Scotland about a year ago. She had progression to her bone mets while on heceptin and was very afraid as she could'bt get tykerb in Scotland.
I researched a bit for her and made a few calls to set up an onc here (Ireland) and thankfully she received the tykerb along with some excellent brain surgery.
We're a lot closer to you here than the States but seem to have easier access to all the new drugs. I hope you find something to help quickly but just thought it worth a mention.
Bty, the lady I refer to moved her family here to live as she has young children and the last time I called she was still in treatment but doing well and happy in her new home.
My best wishes to you

tousled1 · 10-08-2007, 08:58 PM

I have lung mets and am being treated with weekly Taxol and Carboplatin - 3 weeks on 1 week off. Also receiving weekly Herceptin.

Also there has been great results with Navelbine and Herceptin.

There are so many options still available to you so don't give up.

Daisypink · 10-09-2007, 01:16 AM

Hi there

Just an update on me.. I saw my oncologist yesterday..

I start Navelbine and herceptin next week. After that he says he will try a platinum based chemo and then move on to weekly taxol..

I pray that this chemo option stops my lung mets in thier tracks..

Many, many thanks to all you very helpful ladies who are having to deal with with horrid disease.. much love to you all..

Jakki - over here in rainy England...
xxxx