CSN Login
Members Online: 5

Molecular Profiling of cancer – Has anyone had this done?

Lovekitties's picture
Lovekitties
Posts: 2990
Joined: Jan 2010

In helping my sister with her uterine cancer diagnosis, I have found that her surgeon sent off samples and had a molecular profiling done at the cost of over $12,500. Of course the insurance paid ZERO, so guess who will get the bill!

To top it off, the requesting surgeon recommended the "gold standard" chemo treatment, which was not in the recommended treatment list from the resulting report.

We changed to a top notch local onc and he also said that he did not find this type of testing/reporting to be helpful unless you had tons of money to try off label drugs and those not currently recognized as being effective.

Have any of you had this profiling done? If so, did your insurance pay for it? If so, did your onc find it of use?

From a personal perspective I think we will fight this since my sister did not authorize it. Will see how far that gets us.

Marie who loves kitties

mukamom's picture
mukamom
Posts: 371
Joined: Oct 2010

Robert's surgeon had a sample sent up north to have it tested for possible chemo treatments. BCBS denied it I don't know how many times, but the surgeon ended up writing a letter, and the company that did the testing hounded the ins. They finally paid.

Don't think any good came of it. Robert has had standard protocol treatments up until this trial.

I'd fight it.

Good luck,
Angela

tanstaafl's picture
tanstaafl
Posts: 1006
Joined: Oct 2010

Which molecular profiling company and tests? I think that TargetNow was about $2500-4000 "wholesale" depending on test series, with "retail" from some doctors running up to $7000. $12,500 sounds highly marked up. Other labs might be $125-$250 per stain/test.

Just because you have some results doesn't mean you control decisions and administration. You need some kind of medical support for chemo. However, the legal ability to purchase drugs and supplies are one checkpoint, physical administration if IV is another. The physical ability to enforce a decision counts in this business. We have our own IV ready nurse (vitamin C, not chemo) and supportive MDs for scripts.

Armed with the marker data we were interested in, we then concentrated on generic and natural inhibitors of indicated pathways. The CSLEX-CA19-9 biomarker pair for cimetidine is still relevant, although like colorectal cancer, US doctors will be unfamiliar.

Lovekitties's picture
Lovekitties
Posts: 2990
Joined: Jan 2010

This report was from Target Now, and the $12,500 was the cost submitted to the insurance company.

See my reply to Donna on what the report was about in more detail.

Marie who loves kitties

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Marie, I am not sure.. are you talking about the BRAFA test(I think that is what it was called) to see if you carry the gene for uterine cancer that is similar to colon cancer.. if so I had it done... it only cost about $3000 USD and my insurance covered it 100%.
I have heard of molecular testing that is used to determine the route of treatment but I don't know anyone using it.. my doc when I asked said it hadn't been tested enough to be considered reliable and so insurance won't pay for it..
Please tell us more about the usage of the testing you sister had done.

Lovekitties's picture
Lovekitties
Posts: 2990
Joined: Jan 2010

My understanding was that all the tests done (15 charges on the Explanation of benefits) the results were to provide best targeted therapies. The names of the tests are on the report but not the charge per test.

BRAF is one of the tests, but was done to test the "potential benefit" of using a drug called sorafenib, which is apparently a treatment for kidney or liver cancer...neither of which my sister has and costs about $3,000 per treatment. It is listed on the report as Potential Lack of Benefit…duh!

Imatinib was another drug tested. This costs from about $1000 0- $3,500 per 30 pills depending on mgs. A quick check of this drug and it seems to be for treating leukemia, which my sister does not have. This is also listed on the report as Potential Lack of Benefit.

Next Drug tested was SUTENT, which is used to treat advanced kidney cancer (advanced renal cell carcinoma or RCC), GIST (gastrointestinal stromal tumor). This is a rare cancer of the stomach, bowel, or esophagus among a few other things…none of which my sister has. 84 capsules cost about $23,000. This is also listed on the report as Potential Lack of Benefit.

Next Drug was tamoxifen, which is used to treat breast cancer. This actually comes in generic form and costs $30 – 40 for 30 caps. Dosage is 3 times a day. Did I mention, my sister does not have breast cancer? This is also listed on the report as Potential Lack of Benefit.

Next Drug: Bicalutamide tablets 50 mg daily are indicated for use in combination therapy with a luteinizing hormone-releasing hormone (LHRH) analog for the treatment of Stage D2 metastatic carcinoma of the prostate. Did I mention that my sister is female and has never had a prostate? This is also listed on the report as Potential Lack of Benefit.

The list goes on and on and I am determined to research each of them, but given just this list, I think the whole thing is %$@#&! Why in the world test drugs which are not approved for treatment of the type of cancer already determined by normal pathology.

So I guess we will see how this all shakes out, because I don’t feel that there was a good faith effort to determine appropriate approved and available chemos.

Marie who loves kitties

YoVita's picture
YoVita
Posts: 562
Joined: Mar 2010

I hope you can get this resolved for your sister. I certainly will be cautious about any additional tests offered to me.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Did you post on the board that would discuss Uterine cancer?
I wonder what they would say to this..
Did they do a BRACA test to look for the Breast cancer gene which is sometimes linked to Uterine.. female hormones...
i would think the dr must now of some linkage between these cancers we aren't thinking of..

Lovekitties's picture
Lovekitties
Posts: 2990
Joined: Jan 2010

I did not post this on the uterine cancer board as it is not a very active board and from what I have read there most are on the "gold standard" of taxol and carboplatin.

I spent a good part of today really analyzing the report. There were 38 drugs reported on. Of that only 2 were listed as potential benefit and also listed on the NCCN Compendium, which is the standard place to go for treatment options for cancers. '

I also went to the company's web site and found that the report generated is "canned" as far as what drugs they will report on for all solid tumors. Therefore, it does not take into cosideration where the tumor is located...which seems odd because I don't beleive all solid tumors respond to the exact same protocol and explains why 4 were specific treatments for prostate cancer and 4 more were for a variety of issues far from being any relation to uterine cancer. In fact one is used to prevent organ rejection and can cause cancer. Another point of interest is that the taxol was not mentioned at all.

From all this, I feel that calling this targeted therapy is very wide of the mark. If there is any scientific evidence of linkages between uterine cancer and all these others listed, then it is not yet accepted science in the mainstream medical community.

Marie who loves kitties

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i am sorry you have too and grateful you are asking this at the same time.

so, i paid approx 4500 usd last december for stem cell based tumour profiling that they do based on circulting ctc's. the lab is from greece its called rgcc. the results have directed my healing at home and now in germany. the hallwang treatment clinic uses the rgcc tests as the basis for therapy. i hav etrusted my care to them, they are not prefect but still the best i have found, but very expensive.

all the detailed test results have been published on my blog a year ago, goto my online medical records, just search on rgcc, you will not understand much of it, the important parts but i would suggest its worth look.

https://docs.google.com/folder/d/0B10BiJHPKeH8MFdMT0ZlTnBTOUNFcHM1cDRPbWNjdw/edit

the price you indicate i suspect is another type of profiling done from the tumour itself i susepct, i investigated that as well, but it this moment i am trying the therapies here.

no health insurance does not cover this, did not for me and I would consider asking doctor chang opinion as he is the best in the states from what i have researched/heard with regard to dendritic cell vaccine and alternatives, at least worth an email if your interested in looking beyond the "gold standard" because we know what that means.

i ask this question. "would you follow general guideline and then chemo ? or individual tests and specific advices ?" the answer leads to an emotional and financial headache so be careful my friend, unless you provide the knowledge and support for your sister to make a "self directed change herself" . A decision where she has ownership is positive then the results will be less then expected due to the stress response ( based on cortisol )

its great how you are helping your sister, you love and support is priceless. i wish i had someone with me hear, but I am at least grateful for prayers and emails and kind thoughts here. beyond research is the healing power of touch. so hugs and affection are key. all this is just my opinion. good luck and godbless you are your sister.

sometimes some chemo disable / damage our immune systems and they ultimately seal our prognosis, I am avoiding chemo where possible and boosting immune system wherever possible. just my unique approach, i pray it works for me and others as well.

having faith and peace of mind in your therapy is essential, its why i agonise over sharing my research and my story here as some it raises doubts about there own therapy choices.

hugs,
Pete

ps to think we are wonderful unique humans, and that our biologies are somehow so similar that large clinical trials will hold the keys to our salvation is foolish from my experience. now the pricing of these alternative tests is criminal and the price of these alternative therapies is criminal. but until we get enough patients trying them and getting good results we will not decrease the price or get government and medical establishment support.

pps to answer the other question about these unique tests and the costs. my rggc indicated mitomycin c an old inexpensive chemo has the best effect on my colorectal, so thats whats being used hee, its cheap like $150 for a 48 hour low dose bottle. i have spent more on a dinner. effectively what your test is describing is off label uses of drugs based on individual results than statistics based general studies. and stats thy say are lies, more lies and dammed lies. go the science if you got the money, go the stats and government if you don't , you will find a way!

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

My doctor did this for me and said he would use it as a tool (not to be solely relied upon). My report was dated 6/5/12 from a core biopsy specimen collected 5/16/12. Report was from Caris Life Sciences and it was a Target Now report. I just looked at my EOB and Caris billed $5780 and my insurance paid $1258 (zero out of pocket for me).

The report said the drugs with clinical benefit for me were doxorubicin and epirubicin, which we have not tried. It also said irinotecan, cetuximab and a host of others would provide no clinical benefit. I am currently on 5FU (which I believe includes irinotecan) + Zaltrap. Previously I was on 5FU + cetuximab and my disease progressed. I'm not sure how helpful the report was or was not but I did tell my Onc that I would try anything that he felt would provide benefit and if the insurance would not cover a drug, then we would pay cash. Maybe that's why he was OK ordering the report.

I do hope your Sister's insurace company will come to a compromise with the provider and the provider will eat the balance. The provier must be used to this.
Best wishes to your sister,
Ron

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

5 FU does not contain irinotecan, it is a single drug (5 fluoro-uracil). FOLFOX is 5 FU + Leucovorin (folinic acid) and oxaliplatin (hence FOLFOX). FOLFIRI is 5 FU + Leucovorin and irinotecan. You may be on FOLFIRI, but can't tell from your post. Cetuximab is a monoclonal antibody that binds to EGF and helps slow the growth of tumor cells, if you don't have an EGF mutation (40% of colorectal cancers have EGF mutations, so cetuximab doesn't help those cases). Avastin is another monoclonal antibody, but it block VGEF, which is required to form new blood vessels that tumors need to form and grow. It is not affected by EGF mutations like cetuximab is. The molecular screen should have indicated if you had an EGF mutation, and there is some evidence that giving cetuximab to someone with an EGF mutation can actually make the cancer grow faster. All of this is right up my alley, as I am an immunologist by profession, albeit in an animal health company.

Tedd

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

Yes, sorry I meant FOLFIRI. Thanks for info on EGF.
Ron

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network