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Old 02-26-2013, 01:08 PM   #21
bhd1
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Re: Tumor Profiling Lab Tests

thanks kim , i will bring this info to share w my onc on friday. barb
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Old 02-26-2013, 08:42 PM   #22
Joan M
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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
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in January 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in October 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy October 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood February 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Guardant Health liquid biopsy in February 2016 showed four types of mutations in TP53. NED for 9 years. Living with MBC for 10 years. Praying for NED forever!!
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Old 04-10-2013, 03:55 PM   #23
ElaineM
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Wink Re: Tumor Profiling Lab Tests

Thanks for the info and the discussion on the topic.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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Old 04-15-2013, 12:03 PM   #24
dearjilly
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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
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[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
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Old 05-16-2013, 03:21 PM   #25
gdpawel
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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
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Old 10-07-2013, 05:20 PM   #26
Andrea Barnett Budin
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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
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 10-08-2013, 12:49 PM   #27
gdpawel
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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
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Old 08-12-2017, 09:12 PM   #28
Barbara2
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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.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 08-13-2017, 04:41 AM   #29
Becky
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Re: Tumor Profiling Lab Tests

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

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Zometa every 6 months for osteopenia

NED 13 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 08-15-2017, 01:42 PM   #30
Barbara2
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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!
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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