Curematch.com - opinions, please

[TinaFish]

Anyone heard of them? Used them? Anyone have an opinion on what they're offering on their site? They charge $1000. Seems like the information they offer to provide is golden, but I'm so new to all of this cancer stuff and so many people on this site know so much. Thank you

[Pyro]

They’re not going to have any secrets your oncologist doesn’t know about, save your money.

[TinaFish]

They’re not going to have any secrets your oncologist doesn’t know about, save your money.

Wow, really? Lol, they make themselves out to be such a big deal!

[Rock_Robster]

I find these sorts of things fascinating too. However the question my oncologist always asks me when I enquire about 3rd party testing - what are you going to do differently because of this information?

His argument is that information should be used to guide treatment, and my treatment will be done according to the evidence-based protocol for my specific case (to which I, gratefully, have been responding well), with his additional judgement applied when necessary.

If you were facing a decision point (e.g. to do chemo or not, or which type of targeted therapy to include) or were running out of treatment options, then you could ask your onc whether there is additional information which could help make a better decision. However if this is just a ‘curiosity’ test, then he usually tells me to save my money for other things that can help me now.

[Jacques]

Yes, I agree with other posters here. I think that the many 'personalised medicine clinics' that we see sprouting up these days are not really necessary. I suspect that similar results can be achieved by using a do-it-yourself approach with the help of a knowledgeable oncologist who is well informed and knows which supplementary tests to order without bankrupting the patient.

There is also the wider problem of the overall health care system itself. Here is an article that appeared 8 months ago and which now has over 1,500 reader comments. It's interesting to read some of the comments.

What a French Doctor’s Office Taught Me About Health Care
https://www.nytimes.com/2019/01/02/opinion/france-united-states-universal-health-care.html

[TinaFish]

I find these sorts of things fascinating too. However the question my oncologist always asks me when I enquire about 3rd party testing - what are you going to do differently because of this information?

His argument is that information should be used to guide treatment, and my treatment will be done according to the evidence-based protocol for my specific case (to which I, gratefully, have been responding well), with his additional judgement applied when necessary.

If you were facing a decision point (e.g. to do chemo or not, or which type of targeted therapy to include) or were running out of treatment options, then you could ask your onc whether there is additional information which could help make a better decision. However if this is just a ‘curiosity’ test, then he usually tells me to save my money for other things that can help me now.

Yes, but the things that you just mentioned - those things are what curematch.com offers. So now I'm just confused.

When I met with my oncologist a couple of weeks ago, I asked her if we could do genomic testing on leftover tissue from my biopsy. She said yes. But as of two days ago, the testing still hadn't been ordered. I don't know whether genomic testing is routine.

Then, I got the mentally-challenged receptionist on the line, because the doctor was too busy to speak to me. "Ok, Kristina, I understand you want genetic testing," she said. I replied to her, "not genetic; genomic."

She said, "Ok, let me speak to the doctor." Ten minutes later, she gets back on the phone, "The doctor says you'll need to talk to her in person about the genetic testing." I almost yelled at this point, "I did already talk to her about it in person! And I'm asking for genomic testing; not genetic testing. I want to test the genome. Gee-nome." Silence on the other end... I said, "Ok, I'll talk to her on Wednesday when I go in for chemo."

That's three days from now. Good luck to me.

[Jacques]

... "Ok, I'll talk to her on Wednesday when I go in for chemo."
That's three days from now. Good luck to me.

Hi Tina,

The tumor test that you need right now is the one to determine KRAS status, i.e., the test that determines whether the tumor is "KRAS mutant", or "KRAS wild".

This is needed for Stage IV patients in order to determine which second-line treatments are likely to work and which ones aren't.

KRAS status is mentioned several times in section REC-E of the NCCN guidelines for rectal cancer. This is the section used for determining the best sequence of treatments for Stage IV patients. Rock_Robster already mentioned the importance of RAS-wild in a previous post. You need to ask your oncologist to get this particular test done.

" RAS Mutational Analysis
The presence of a KRAS mutation has been shown to be associated with lack of clinical response to therapies
targeted at EGFR, such as cetuximab and panitumumab. While clinical guidelines for KRAS mutational analysis
are evolving, current provisional recommendations from the American Society of Clinical Oncology are that all
patients with stage IV colorectal carcinoma who are candidates for anti-EGFR antibody therapy should have their
tumor tested for KRAS mutations. Anti-EGFR antibody therapy is not recommended for patients whose tumors
show mutations in KRAS codon 12, 13, or 61, but data on codon 146 are currently insufficient. A recent study has
shown that NRAS mutation, like KRAS mutation, has influence on response to anti-EGFR therapy. Although
more studies are needed, these findings may lead to broad KRAS and NRAS panels to include codons 12, 13, 61,
and 146 of both genes."
Source: College of American Pathologists

https://www.bowelcanceraustralia.org/ras-biomarker

https://labtestsonline.org/tests/kras-mutation

https://testdirectory.questdiagnostics.com/test/test-detail/18902/?cc=MASTER
https://testdirectory.questdiagnostics.com/test/test-detail/91995/colorectal-cancer-kras-mutation-therascreen?p=r&q=kras&cc=MASTER

NCCN Guidelines for Rectal Cancer
https://www2.tri-kobe.org/nccn/guideline/colorectal/english/rectal.pdf

[boxhill]

Your doctor may have submitted a request to your insurance company for pre-approval. I had to get approval before testing beyond the basics: KRAS, BRAF, and dMMR/MSI (or MSS), all of which were done while I was still in the hospital.

In my case, approval was easy to get because I am dMMR/MSI-H, and Lynch Syndrome had to be ruled out.

You may need to make it clear to your doctor whether you are willing to pay for it out of pocket in order for things to proceed. Whether what they claim to do is worth $1K is another matter. Personally, I doubt it. The available therapies for CRC are well-known, and the genetic factors involved in choosing drugs are also well known. I strongly doubt that there is any secret body of knowledge that a competent oncologist doesn't already have. I bet that half the people here or on Colontown could recite to you the major genetic factors most likely to influence drug choices.

ETA: my onc routinely orders genetic testing for all Stage 3 and beyond patients. If your doctor doesn't do so, maybe you need to find another one.

[Jacques]

... You may need to make it clear to your doctor whether you are willing to pay for it out of pocket in order for things to proceed....

If they use the Therascreen test kit, the cost per test is something like the following:

According to Qiagen, the Therascreen KRAS RGQ Kit (which includes confirmation of DNA integrity and the detection of seven KRAS mutations) has a unit price ranging between C$170 to $200 (Frederick S. Jones, Qiagen Inc., Germantown (MD): personal communication, 2014 Jan 13). A Canadian cost-effectiveness study estimated that the cost of KRAS mutation testing was between $150 and $500 (in 2009 Canadian dollars)

[boxhill]

Jaques, I was referring to the more extensive testing in that instance.

Testing for KRAS et al should be standard and I would be truly astonished if she had to consider paying for it out of pocket.

BTW, TinaFish, it sounds as if you are MSS, if your oncologist said immunotherapy is not a likely treatment for you. You should add that to your signature.

[NHMike]

Curematch looks like standard genomic tumor testing along with a software-based analysis for targeted treatments. The price is attractive at $1,000.

My understanding is that genomic tumor testing is not standard of care and not covered by insurance. It may be that a doctor requesting it could get it covered but I have no evidence of this.

I asked my local oncologist to do it and he brushed it off. My son works in a lab that does this and his manager offered to do it for me at no cost. So he did the analysis and emailed me a report on the results.

A coworker had lung cancer and went to Dana Farber and they were able to determine his mutation and provide a targeted therapy. So maybe they do it by default or if the oncologist recommends it.

[Rock_Robster]

When I met with my oncologist a couple of weeks ago, I asked her if we could do genomic testing on leftover tissue from my biopsy. She said yes. But as of two days ago, the testing still hadn't been ordered. I don't know whether genomic testing is routine.

Good on you for asking and pushing this TinaFish. I’m sorry you’re having such a sh*tfight to get what should be Standard of Care testing for Stage IV. I must say this is another red flag for me - if you walk into any NCI-designated cancer they would (should) do genomic testing without even a discussion. I was first diagnosed in The Netherlands, at a free public general hospital, and they did genomic testing (down to codon level) without even asking me. I know this is a different country and system, but I’m still very surprised.

[Cured]

TinaFish and all: diagnoses used to be simpler & I understood them. Now with the advanced genetic tests and Immunotherapy treatments it is harder for us patients to know what is correct and optimal. We place a lot more trust in the Oncs to tell us right. When I asked for the advanced tests it took over a month to get the results. My Medicare and tie-in insurance took care of it. I was hoping that new Immunotherapy would cure me. But the type I have is not yet known to respond to Keytruda,etc. They had no problems with me getting a 2nd opinion. I flew to NYC to see a specialist at Sloan Kettering. They confirmed the analysis from my Onc /Cancer Center.

I am blessed that the traditional treatments seem to be working on me. (Perhaps the ketogenic diet is helping too. Hoping to starve the cancer by not feeding it sugar. But my Onc cares not about diet/fasting.). I get scans next week, so will get confirmations.

[TinaFish]

Thank you to all of you. If the KRAS test is so crucial, then I would HOPE that it's already been done and that my oncologist has already tailored my treatment around the test results. I'll find out.

Oncologist did indeed tell me that I'm MSS. If she knows that, then can we assume that some level of testing has already been done? I don't know how MSI/MSS status is determined.

I should add it to my signature, I know. Someone kindly referred me to the page where I could create my signature, and now I have no idea where that info is. Too tired to do that tonight.

[NHMike]

The genomic stuff is quite complicated. Here is a page which lists Colorectal Cencer tumor mutations and there are well in excess of 100 of them: http://targetedcancercare.massgeneral.o ... D-(c-35G-A).aspx

The page describes what the mutation is and what it does but the language assumes some level of university biology so it can be difficult to understand but it provides an explanation of what's happening to you on a molecular level.

Some mutations are aggressive - and it would be good for your oncologist to know if you have one of those. Some mutations have targeted therapies. In general, with CRC, you just get 5FU and Oxaliplatin but there are some targeted therapies for some mutations (and sometimes other conditions). Genetic testing (blood test; not a tumor sample) can determine if you have conditions that indicate that some drugs shouldn't be used or they may indicate that targeted therapies can be used.

So it's very complicated stuff and oncologists aren't always up to date on the latest clinical trials.