Caris Life Sciences molecular cancer profiling

Posted by beebe @beebe, 4 days ago

Anyone had their cancer analyzed by Caris Lifesciences to look for genetic mutations which chemo therapy could target? I have also read about functional testing, (PARIS and Nagourney Cancer Institute’s functional profiling analysis), which I am not sure is developed enough yet to work for all cancer types.

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beebe, I had the profiling of my tumor done (not by Caris). They note the genetic mutations of your tumor. They match your mutations to any chemotherapeutic agent that has been used against that mutation. You end up with a list of chemotherapy drugs that have been used successfully, used unsuccessfully and those that are being tested in clinical trials. All three chemotherapeutic drug that were pressed upon me had already been tested against my mutations and had failed to affect the mutation. At University of Pittsburg they refused to treat me without a port for one agent, oral and injectible drugs for two others without somatic testing. I was surprised to find that it wasn't a choice I would be allowed to make. I found a proton center that would treat with chemo. And had successful treatment without useless chemotherapeutic side effects.
There may be no chemo information on some of your mutations. The data base has enlarged enormously in the seven years since my somatic testing. I think this testing is crucial to your experience as a cancer patient. I suggest that you accept all testing available. Best wishes

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I had CARIS. It's good to have it can keep you from receiving therapies that would never work on your tumor type. But here's the catch insurance companies may not pay for it and it's about $6,000. I have not gotten the bill from Caris. The oncologist thinks that they will work with me on this pricing. I don't know what I'm going to do about it. The new law says Dad medical debt can't be put on your credit reports anymore so maybe I just won't pay it. But that does seem a little unethical so I don't know how I'm going to handle that.

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https://www.carislifesciences.com/patients/patient-services/financial-services/ I like that they will struggle with your insurance. I'm not sure I'd want to work with them on pricing, unless the discount were to be huge.
You have ethical credit left over from the contribution of your somatics to the welfare of the rest of us. On the other hand does the pricing seem ethical? I hope your insurance comes through.

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I also had Caris testing, and it made me eligible for the first clinical trial that I went on. So I guess I'm glad I did it. (I'm having a second biopsy next week for my second clinical trial because they won't accept the Caris results from last April because I had a partial response on the first trial.)

The billing is a mess though. The hospital took two weeks to even place the test order because they said they were getting insurance approval. Whatever they did, I didn't get any documentation, and it certainly didn't preclude insurance problems. I was freaking out from the insurance denials I was getting, but then I talked to Caris, and they said that if the insurance denied it, the most I would have to pay would be $350. So I stopped worrying so much. But there may still be problems.

Apparently Caris bills for the test in two parts: 1) the immunohistochemistry, and 2) the DNA sequencing. My insurance company decided that the IHC was "covered" and out of network, so I owed Caris $1000 just for that part. So far they have declared the sequencing "not covered" and say that I owe Caris the full $21,000 that they try to bill for that. Caris is still trying to get the insurance company to "cover" the sequencing (note that this is 8 months later).

I received the $1000 bill for the IHC and complained vociferously to Caris. Ultimately I paid $45 for that. They still haven't tried to bill me for the sequencing, but I'm going to raise h*** if they try to get more than $305 out of me.

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@val64

I also had Caris testing, and it made me eligible for the first clinical trial that I went on. So I guess I'm glad I did it. (I'm having a second biopsy next week for my second clinical trial because they won't accept the Caris results from last April because I had a partial response on the first trial.)

The billing is a mess though. The hospital took two weeks to even place the test order because they said they were getting insurance approval. Whatever they did, I didn't get any documentation, and it certainly didn't preclude insurance problems. I was freaking out from the insurance denials I was getting, but then I talked to Caris, and they said that if the insurance denied it, the most I would have to pay would be $350. So I stopped worrying so much. But there may still be problems.

Apparently Caris bills for the test in two parts: 1) the immunohistochemistry, and 2) the DNA sequencing. My insurance company decided that the IHC was "covered" and out of network, so I owed Caris $1000 just for that part. So far they have declared the sequencing "not covered" and say that I owe Caris the full $21,000 that they try to bill for that. Caris is still trying to get the insurance company to "cover" the sequencing (note that this is 8 months later).

I received the $1000 bill for the IHC and complained vociferously to Caris. Ultimately I paid $45 for that. They still haven't tried to bill me for the sequencing, but I'm going to raise h*** if they try to get more than $305 out of me.

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Val64, Thanks for sharing your Caris testing experience. It is amazing the differences in costs for Caris testing. Someone else told me her Caris bill came to $6,000, which she had to pay; your $21,000 quote seems a bit excessive. I wonder if Caris jacks up the price for insurance companies knowing they will only pay a small percentage of the total. How long did it take to get your results back once they were sent into Caris?

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@gently

beebe, I had the profiling of my tumor done (not by Caris). They note the genetic mutations of your tumor. They match your mutations to any chemotherapeutic agent that has been used against that mutation. You end up with a list of chemotherapy drugs that have been used successfully, used unsuccessfully and those that are being tested in clinical trials. All three chemotherapeutic drug that were pressed upon me had already been tested against my mutations and had failed to affect the mutation. At University of Pittsburg they refused to treat me without a port for one agent, oral and injectible drugs for two others without somatic testing. I was surprised to find that it wasn't a choice I would be allowed to make. I found a proton center that would treat with chemo. And had successful treatment without useless chemotherapeutic side effects.
There may be no chemo information on some of your mutations. The data base has enlarged enormously in the seven years since my somatic testing. I think this testing is crucial to your experience as a cancer patient. I suggest that you accept all testing available. Best wishes

Jump to this post

Amazing that the University of Pittsburgh wanted to give you drugs which had been shown to not work for your specific cancer. I am happy you found a clinic that was willing to work with you. Thank you for sharing, your experience really shows how you have to stay vigilant through this whole process.

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@val64

I also had Caris testing, and it made me eligible for the first clinical trial that I went on. So I guess I'm glad I did it. (I'm having a second biopsy next week for my second clinical trial because they won't accept the Caris results from last April because I had a partial response on the first trial.)

The billing is a mess though. The hospital took two weeks to even place the test order because they said they were getting insurance approval. Whatever they did, I didn't get any documentation, and it certainly didn't preclude insurance problems. I was freaking out from the insurance denials I was getting, but then I talked to Caris, and they said that if the insurance denied it, the most I would have to pay would be $350. So I stopped worrying so much. But there may still be problems.

Apparently Caris bills for the test in two parts: 1) the immunohistochemistry, and 2) the DNA sequencing. My insurance company decided that the IHC was "covered" and out of network, so I owed Caris $1000 just for that part. So far they have declared the sequencing "not covered" and say that I owe Caris the full $21,000 that they try to bill for that. Caris is still trying to get the insurance company to "cover" the sequencing (note that this is 8 months later).

I received the $1000 bill for the IHC and complained vociferously to Caris. Ultimately I paid $45 for that. They still haven't tried to bill me for the sequencing, but I'm going to raise h*** if they try to get more than $305 out of me.

Jump to this post

Well that's incredibly inexpensive. So far my insurance has refused to pay for my caris. The insurance company thinks it's going to be about $6,000 for both ends. I have not gotten a bill from caris But The new laws say that people cannot have their medical bills go to credit rating companies so I might pay the bill when it comes in and if I can't get it reduced to something reasonable.

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@beebe

Val64, Thanks for sharing your Caris testing experience. It is amazing the differences in costs for Caris testing. Someone else told me her Caris bill came to $6,000, which she had to pay; your $21,000 quote seems a bit excessive. I wonder if Caris jacks up the price for insurance companies knowing they will only pay a small percentage of the total. How long did it take to get your results back once they were sent into Caris?

Jump to this post

All medical bills are about 3-fold higher than the biller actually expects to receive from the insurance company. When I was getting infusions including Keytruda, the hospital billed ~$45,000 each time. (I had 7 of these.). The insurance company paid ~$16,000 each time. (still a big number)

It took Caris about 2 weeks after they got the specimen. However it took the hospital 4 weeks after the biopsy to actually send it to them. (Two weeks for "insurance pre-approval" and two weeks that the pathology department couldn't be bothered to send the specimen. During this time I specifically asked the oncologist's office if the "specimen had been sent to Caris" and they said yes. Two weeks later when the specimen was actually sent, I flipped, accused the nurse of lying to me, and yelled at the NP. Not a good idea. I haven't been back to that hospital since. Hope never to go back.)

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@val64

All medical bills are about 3-fold higher than the biller actually expects to receive from the insurance company. When I was getting infusions including Keytruda, the hospital billed ~$45,000 each time. (I had 7 of these.). The insurance company paid ~$16,000 each time. (still a big number)

It took Caris about 2 weeks after they got the specimen. However it took the hospital 4 weeks after the biopsy to actually send it to them. (Two weeks for "insurance pre-approval" and two weeks that the pathology department couldn't be bothered to send the specimen. During this time I specifically asked the oncologist's office if the "specimen had been sent to Caris" and they said yes. Two weeks later when the specimen was actually sent, I flipped, accused the nurse of lying to me, and yelled at the NP. Not a good idea. I haven't been back to that hospital since. Hope never to go back.)

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That happened to me too! The doctor thought it was sent at the time of surgery, but it wasn't. I finally demanded the care manager tell me what day it was sent. she came back and said "it wasn't it caught between the cracks because I don't have ovarian cancer and its not on the list for uterine cancer She actually wrote that in MyChart.. My care manager has messed up so many times. I complained but she is not employed by the doctor she employed by SSM and i would have to make a Patient relations complaint. I've done that once and it go what i needed at the time but it didn't fix her management skill.

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@beebe

Amazing that the University of Pittsburgh wanted to give you drugs which had been shown to not work for your specific cancer. I am happy you found a clinic that was willing to work with you. Thank you for sharing, your experience really shows how you have to stay vigilant through this whole process.

Jump to this post

beebe, I saw dr Metz at University of Pittsburgh before having somatic profiling. I have to correct that post. The proton department there made serious efforts to contact me after I left, even agreeing by phone to treat without chemotherapy. I'd have gone back except that I'd already begun treatment at CA Proton (formerly Scripps Proton). I would still recommend dr. Metz. I had the most wonderful support team there.

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