Re: Tumor Profiling Lab Tests
 

thanks kim , i will bring this info to share w my onc on friday. barb

Re: Tumor Profiling Lab Tests
 

Hi Kim,

Thanks for providing details about the tests. It really gives us a good idea of how they might work. Glad to hear about your insurance coverage, since the cost is part of the issue.

bhd1, I too am sorry about your progression on t-dm1. Our discussion here deals with whether researchers and oncologists feel that these tests are useful. The issue is controversial, and it appears that your doctor doesn't agree that they're helpful. Kim may be able to give you some insight since she has had experience with a test.

Best, Joan

Re: Tumor Profiling Lab Tests
 

Thanks for the info and the discussion on the topic.

Re: Tumor Profiling Lab Tests
 

I had something called "patient knowledge, attitude and expectations. Genome sequence, molecule profiling, and DNA mapping. Results: Nothing. :(
They only tested something like 23 genes out of thousands and they didn't see anything there to help me in further tx.
Just an FYI. Not sure if it's the same thing the original sticky (tumour profiling) I think it sounds the same.
I had it done at Princess Margaret Hospital in Toronto, ON.
On the brighter side. Perhaps they'll find something in the future. :)
Jill

Re: Tumor Profiling Lab Tests
 

The choice of a lab is not a geographical consideration, but a technical consideration. All of the labs are experienced and capable of providing very useful information.

However, the labs vary considerably with regard to technologies, approach to testing, what they try to achieve with the testing, and cost. Some labs have been offering these assays as a non-investigational, paid service to cancer patients, in a situation where up to 30 different drugs and combinations are tested, at two drug concentrations in three different assay systems.

The labs will provide you and your physician with in depth information and research on the testing they provide. Absent the assays, the oncologist will perform "trial-and-error" treatment until he/she finds the right chemotherapy regimen. You should have the right chemo in the first-line of treatment.

By investing a little time on the phone speaking with the lab directors, you should have enough knowledge to present the concept to your own physician. At that point, the best thing is to ask the physician, as a courtesy to the patient, to speak on the phone with the director of the laboratory in which you are interested, so that everyone (patient, physician, and laboratory director) understand what is being considered, what is the rationale, and what are the data which support what is being considered.

Also, there is tumor analysis (genotyping) coupled with clinical trial literature search, which tries to match therapies to patient-specific biomarker information to generate a treatment approach. In other words, information that may help when considering "potential" treatment options (theoretical analysis).

Or you can "actually" measure (phenotyping) the response of the tumor cells to drug exposure. Following this exposure, measure both cell metabolism and cell morphology. The integrated effect of the drugs on the whole cell, resulting in a cellular response to the drug, measuring the interaction of the entire genome.

The endpoints (point of termination) of genotyping analysis are gene express, examining a single process (pathway) within the cell or a relatively small number of processes (pathways) to test for "theoretical" candidates for targeted therapy.

The endpoints of phenotyping analysis are expression of cell-death, both tumor cell death and tumor associated endothelial (capillary) cell death (tumor and vascular death), and examines not only for the presence of the molecular profile but also for their functionality, for their interaction with other genes, proteins and other processes occuring within the cell, and for their "actual" response to targeted therapy (not theoretical susceptibility).

Again, the choice is theoretical vs actual analysis.

World renowned Oncologists are challenging the cancer industry to recognize a Chemo-Screening test (CSRA) that takes the "guesswork" out of drug selection. One of the reasons medical oncologists don’t like in vitro chemosensitivity tests is that it may be in direct competition with the randomized controlled clinical trial paradigm. http://vimeo.com/72389724

Re: Tumor Profiling Lab Tests
 

Amanda,

Can you get hooked up with something like GDPawell is talking about down under? Are they doing this kind of stuff there?

It has a ways to go but reading Nagourney's book, Outliving Cancer, I was really impressed with his successes. And top docs themselves go to him and his labs for match ups for themselves or their spouse! That says a lot.

Like the Chinese people who eat in American Chinese restaurants says -- this is the real deal!

Andi

Ballarat Cancer Research Centre in Australia
 

The Ballarat Cancer Research Centre (BCRC) is a regionally based cancer research facility in Australia. They have a cancer research project going on called The Chemosensitivity Testing Project to understand the link between unique disease and unique treatment protocols by individualizing a patient's treatment to determine better treatment approaches and better outcomes.

In 2005, one of their clinicians travelled to Los Angeles, CA to undertake chemosensitivity testing on a sample of his tumor cells. This lead to their interest in the area of using biochemical chemosensitivity assays instead of genetic markers to try and determine the specific susceptibility of cancers to chemotherapy.

They met with Dr. Ian Cree from the Translational Oncology Research Centre in Portsmouth, UK and spent time with Cree's group to learn the methodology and bring back the expertise to the BCRC and devised a clinical trial to test the efficacy of this method in advanced lung cancer patients.

Dr. Ian Cree performed the very first prospective, randomized clinical trial of physician's choice chemotherapy versus ATP assay-directed chemotherapy in non-surgically debulked, platinum-resistant ovarian cancer and presented it at the 2005 ASCO meeting. The ATP is one of the "cell-death" assays.

At BCRC, they want to help cancer patients who don't fit the current "one-size-fits-all" cancer treatment approach. They already know this approach is not suitable for all those who will face a cancer diagnosis.

http://www.bcrc.org.au/index.php

It looks like the Ballarat Cancer Research Centre has changed their name to Fiona Elsey Cancer Research Institute, as identified by their website url address.

Personalized Cancer Treatments Abroad

http://cancerfocus.org/forum/showthread.php?t=3948

Re: Tumor Profiling Lab Tests
 

Hi, Becky! Long time no see! Need to get to bed so this will be short! Just wondering if you are still taking Arimidex? Congrats to your NED! A blessing beyond measure.

Re: Tumor Profiling Lab Tests
 

I am still on Arimidex. 12 years almost. I will be changing my signature to 13 years NED soon!

Re: Tumor Profiling Lab Tests
 

Wonderful to hear, Becky. I wonder how many oncs let their patients go beyond 10 years. Not many, I'd guess.

On year #12 of being on Anastrozole, my onc suggested I see a specialist to ask any questions I may have about anything, in general; so I did. She (specialist) told me that she has very few patients on hormone therapy beyond 10 years.

She suggested that I switch to Tamoxifen because it might be time to try a different mechanism (not sure if that is the word she used!) vs what I'd used for 12 years. I took her advice, but was uncomfortable with changing what had been effective for me in the past, so I went back to Anastrozole after a couple of months.

A couple months ago, I had my regular 6 mo check up with the onc I've had since this journey began. He suggested that after 14 years, I should stop the Anastrozole. I was in such shock, I didn't have many questions for him! He wanted me to come back in 3 months for a CT scan of the chest & abdomen, so see if it had returned.

WHAT? I was having a hard time grasping what was happening. 3 months passed, the tests were OK, knock on wood. Very thankful, counting blessings as always.

He had justified the change by saying he had read recent new info on side effects of long term hormone therapy; that going so long might be too much. Side effects after that much time are unknown, etc.

I told him I felt like I had lost my life jacket, but he tried to reassure me that this was the right thing to do. It took a while to get used to the idea.

Have you & your onc talked of the future, in terms of how long you will continue your hormonal therapy? I also had issues with bone loss; osteopenia.

Also have questioned my memory since way back after finishing chemo. Shutting off estrogen with hormone therapy, also might take a toll, as estrogen is needed by the brain for normal functioning. Poor memory may be a symptom of estrogen deficiency.

Gotta run, thanks!