Rich, I just sent you a pm.

How can we help you?

Hi folks. I have a momentary slice of calm and would like to recruit your help.
Can you find any other approaches like those below? Or..further info about these specifically? I'm in a random hospital with mom after a neutropenic fever that occurred while returning from Chicago. 3 different ERs in 4 days. Oncs here are looking at her case and I want to run options by them. I know they will likely say "not standard of care" etc. but ah well.


http://www.sciencedirect.com/science...3a8bce6ba64362



http://jjco.oxfordjournals.org/cgi/c.../full/29/8/3

Gosh, Rich -
I have never heard of either one of these treatments. The Japanese one was in 1990 or so. I would imagine that even though one patient had success, this was not picked up and used more extensively.

Don't know where you would even GO to try either of these.

Hope your Mom's white count is better now and she can proceed with some kind of treatment.

She needs some stability now.

Like StephN said, it will be difficult to find a location to get either of those treatments.

The first article you posted seems to refer to Provera or other similar drugs, the only thing I can think of is if you can find a sympathetic PCP to prescribe it for you. But there are side effects and she would need to be monitored closely.

If your mom still has standard treatment options, I'd opt for those first, as there is no reason to believe these other options mentioned in those links would be more helpful to her, and the standard options are based on clinical evidence.

In my case, I've always chosen to go with standard treatment options, and only looked to complementary or alternative options when I'm not on treatment. If I was left with no traditional treatment options, and no clinical trials were available to me, then perhaps I'd consider something like this. But not before.

Hope you find something to help your mom before too long.

Still in hospital. Good news is that bilirubin is 1.7.. a continued trend down from 5 a week ago. Still abnormal but on the low side of high where it was a few weeks ago. Abdomen (around liver) is softer..said might be sign of chemo benefit. Had slight fever yesterday, still getting antibiotics for possible infection and lactulose for elevated ammonia level.
Have the folks here with liver mets all had normal liver function tests? Abnormal liver figures rule out most trials and many direct treatments.

Rich, as I was reading your update, in the back of my mind was "but maybe the chemo itself is working". I hope so.

Re Esther's comment, that has also been my approach - go with the "proven" approach but also complement these with, well, complementary approaches.

Re your question on liver functions, I think I had always had "normal" liver function , until this latest treatment. i've been dealing with elevated LFT's since beginning it - and for me, it is clearly treatment related vs. cancer related (my AST was 35 the morning of my first treatment, and 115 a week later!). It's good to hear that the bilirubin is coming down - THAT may be a good sign in terms of the "is the chemo working" question.

rich--spotted two new articles on her2 testing
 

1: Arch Pathol Lab Med. 2008 Oct;132(10):1635-47.

Comparison of quantitative immunofluorescence with conventional methods for HER2/neu testing with respect to response to trastuzumab therapy in metastatic breast cancer.

Giltnane JM, Molinaro A, Cheng H, Robinson A, Turbin D, Gelmon K, Huntsman D, Rimm DL.
Departments of Pathology, Yale University School of Medicine, New Haven, Connecticut 06520-8023 , USA.
CONTEXT: Selection for trastuzumab therapy depends on a companion diagnostic assessment of HER2 by either immunohistochemistry (IHC) for protein overexpression or fluorescence in situ hybridization (FISH) to detect gene amplification. Although many studies have compared IHC to FISH, few have compared the tests to the true gold standard, tumor response. OBJECTIVE: To compare HER2 testing by FISH and IHC along with a third immunofluorescence-based assay (automated quantitative analysis-tissue microarray [AQUA-TMA]) and to assess the value of each test for prediction of response to trastuzumab. DESIGN: Immunohistochemistry and FISH assays were done on both whole slides (IHC-WS and FISH-WS) and on TMAs (IHC-TMA and FISH-TMA). AQUA was only done on TMAs (AQUA-TMA). Response was assessed according to modified Response Evaluation Criteria in Solid Tumors. RESULTS: AQUA-TMA scores showed a significant linear relationship to both the FISH signal ratio and IHC scores on whole sections and TMAs. Assay assessment by outcome showed no association between response and FISH-WS ratio (P = .96), FISH-TMA (P = .55), IHC-WS (P = .75), or IHC-TMA (P = .06), but a significant relationship between AQUA score and categoric response was observed (P = .01). Assessed as a function of outcome using models of logistic regression, both AQUA-TMA and IHC-TMA were equally significant (P = .01). FISH-WS was the most sensitive assay, with a significantly higher true-positive fraction than all other tests except AQUA-TMA, although it was the least specific. IHC-TMA was the most specific assay. The lowest misclassification rate was achieved using AQUA-TMA (0.30). CONCLUSIONS: Both AQUA-TMA and IHC-TMA were substantially more predictive than the FISH or IHC-WS tests. Although these results are derived from a small retrospective series, they suggest that accurate measurement of protein expression and unbiased selection of tissue for measurement may be key factors in prediction of response.

Links

Delineation of HER2 Gene Status in Breast Carcinoma by Silver in Situ Hybridization is Reproducible among Laboratories and Pathologists.

Carbone A, Botti G, Gloghini A, Simone G, Truini M, Curcio MP, Gasparini P, Mangia A, Perin T, Salvi S, Testi A, Verderio P.
From the Department of Pathology,* National Cancer Institute of Milan, Milan, Italy; Department of Pathology, National Cancer Institute "G. Pascale" of Naples, Naples, Italy; Diagnostic Immunohistochemistry and Molecular Pathology, Division of Pathology, Centro di Riferimento Oncologico, Aviano, Italy; Department of Pathology, Ospedale Oncologico, Bari, Italy; Department of Diagnostic Technologies, National Cancer Institute of Genoa, Genoa, Italy; and Medical Statistics and Biometry,** National Cancer Institute of Milan, Milan, Italy.
An automated enzyme metallographic silver in situ hybridization method (SISH) has been reported to successfully determine human epidermal growth factor receptor 2 (HER2) gene amplification. We evaluated the staining and interpretative reproducibility of the HER2 SISH assay at five laboratories and compared SISH results with other in situ hybridization (ISH) methods. The HER2 gene status of 89 breast carcinomas was analyzed in parallel using manual dual-color fluorescence ISH, manual chromogenic ISH, and bright-field automated SISH. A total of 1098 SISH-stained slides were evaluated. For comparison, all specimens were stained by 4B5 immunohistochemistry for HER2 protein expression. Interpretation was performed by pathologists at five different laboratories using the algorithms provided by the manufacturers and the guidelines of American Society of Clinical Oncology/College of American Pathologists. Staining and interpretative reproducibility were measured through the computation of weighted kappa statistics. Following the optimization of SISH staining, 1077/1098 (98%) of slides were evaluable. Excellent reproducibility and efficacy of HER2 SISH staining, and interobserver interpretation (Kw = 0.91), were observed among five sites. For the 89 invasive breast cancer cases, the overall rate of concordance between consensus 4B5 and consensus SISH, fluorescence ISH, and chromogenic ISH was 96.6% (86/89), 97.8% (87/89), and 96.6% (86/89), respectively. Overall concordance between positive and negative SISH and fluorescence ISH results, as well as between individual and consensus positive and negative SISH results, was excellent (P < 0.001).
PMID: 18832456 [PubMed - as supplied by publisher

So...path is at USC getting FISH. Now what?

wait for the result , I guess
 

I would think they would be very thoughtful since this is a "third" opinion, suggesting another test IF they think there is any question about their result

Mom is eating so little these days. no nausea. just not interested. Anyone here have this and then recover appetite as treatment went along? I'm just afraid it's a very bad sign.

Rich
 

"Care Support" has orchestrated a meeting with the onc at this hospital, wants to address "prognosis" so that care options are evaluated. I know it's bad..but I have been avoiding hearing a full on discussion. i have enough trouble maintaining any hope as it is.

Strange..the above never happened. No explanation.

regarding the depo provera study. http://www.sciencedirect.com/science...3a8bce6ba64362
One of the researchers from Poland is currently a candidate for the board of directors of ASCO:
http://www.sciencedirect.com/science...3a8bce6ba64362
"Jacek Jassem, MD, PhD, is a Professor of Radiotherapy and Clinical Oncology, and Head of the Department of Oncology and Radiotherapy at the Medical University of Gdansk, Poland. His primary scientific interests are lung, breast, head and neck cancers, and molecular oncology. Dr. Jassem's ASCO involvement includes serving as Immediate Past Chair of the International Affairs Committee, and previously as a member of the International Development and Education Awards (IDEA) Working Group"

So..I doubt it's complete BS.

Oy..lost an extensive post.Bottom line: new onc prescribing 4 week cycle of Xeloda in hopes of improving liver function with hopes of following with Taxotere based combo with high success rate in local setting. Ah...
Lab results from extensive USC lab reinterpret= 1.7 her2..i.e. "negative"
While in the hospital for infection, LFT trended downward. Last check 2 days before beginning Xeloda had bilirubin of 1.1, essentially normal and way down from a 5.3 couple weeks earlier. Other figures apparently were still elevated.

i hope that things go better with this new onc. please keep us informed of how mom is doing.

Boy...hard to not have any information other than mom's general lack of side effects. Urine and stool appear to have become more normal colored, although sometimes more frequent. Lower leg and feet swelling has been better in the last few days. Although there was talk of starting low and increasing dosage along the way, Onc decided after 1st week on and off to maintain at 1500mg x2 per day. I've perused the web enough to discern the dosage issue was contentious in the beginning days of Xeloda. Anyone care to say what their dosage was?

Hey Rich
 

Lack of side effects is good, hey, we will take that right? My memory escapes me at the moment about the dosage Ed took since it was in 8/07 but I will gladly review my files for you.

Popping this up to get some replies on others dosages. Talk soon my friend>>Believe51

Update: Had scans and bloodwork Monday afternoon but ended up going to the ER late that night for chills/fever. Got antibiotics and temp went down quickly. No word on what caused it, blood counts good. Consult regarding Spheres at another facility put off again.
Mom has been continuing on Xeloda since mid October
Liver function tests and CA27 continue to improve.
But...
The scans show no change in liver but 1 possible new 3mm in lung and one previous 1.2cm now 1.7cm. The 3mm is noted as to be small enough to be missed earlier due to calibration etc. One other is basically the same.
This since 11/28 scan. Now..the earlier scan was done at a different facility but...
Is measurable growth of any sort what one calls progression?
I am also concerned that she had an appt. lined up for Friday to discuss things but the onc came to her room briefly before I was at the hospital and said that the appt. woul dbe cancelled. Mom asked if he head seen the scans and he said he hadn't yet..though I notice the ER report referred briefly to the expanding nodule.
The 11/28 scan was thought to be signs of multiple improvements in the lungs so this seems like a bad turn. I will crash in mom's room tonite so as to be there when the onc makes his early rounds.
Any thoughts folks? Funny how quickly the wise cracks can leave you.

Rich,

I will be praying and thinking about you and your mom this morning.

You are a good son.

Amelia

anxiously waiting