Hi
I just found out that my doctor ordered a Caris technologies molecular profile of my liver biopsy.
In reading about it, it is supposed to analyze the tumor to find treatments most and least likely to work based on a range of molecular details and mutations
has anyone else done this? Thoughts?
yes. This was o e of the first things my onc ordered to understand what mutations may exist. For example I have the Pik3ca
Did it have other treatment suggestions? That is what I am interested in... Apparently it can also recommend clinical trials.
How are you by the way??
Hi Pb ! I’m doing ok as it were. A Caris report doesn’t suggest treatment options but it does provide your oncologist with better choices. For example, I have the Pik3ca mutation, this Piqray as my now medication … I will be moving on to Xeloda tho.
Yes just had it done and fun fact, my neighbors daughter works in their lab here in AZ...the report was very detailed and gave a full list of treatment options based on the findings. It did not really change what my oncologist had in mind but it helped reinforce the decision and also probably helped the insurance agree to the treatment. It was from my original biopsies from 2019 so I wonder if at some point they would do a new biopsy to check for changes. All good stuff though.
I actually worked for caris a while ago with the Target Now technology .. which at the time had the capability to match your tumor pathology to 89 drug able targets… (prob more now)
and could even exclude therapies that most likely wouldn’t work… for instance if a woman has a PTEN mutation then Herceptin isn’t likely to benefit.
They have amazing technology… the most amazing pathology. The reports were 17 pages long when I worked there.
Many oncologist were intimidated by the complex report…so you must have a smart confident oncologist. I worked there more than 10,years ago so I imagine they have even doing more precision medicine now.
r
Dear Pb ----Whoa! I sure have a lot to learn and a lot has happened. Can't write much now. Am in a hurry. Will be seeing the oncologist this morning. Among the three topics I have sent to the oncologist that I want to talk about is treatment based on my PIK3CA which, up to now, I understood it to be Piqray. She is pushing Ibrance hard. It is almost as if she has shares in the unethical company. Here, is the notion that there is an array of solutions, temporary, to stave off the militant cancerous lesions in my liver. Great! Thanks!
I have a mutation that will benefit from Piqray, but Ibrance has worked well for me for four years and from what I hear is easier tolerated than Piqray. Curious why you think Ibrance is made by an unethical company.
Dear ABL--- I "speak" from a place of so little knowledge and one of helplessness about my care. There is this vast realm of information held by the oncologists, each one dispursing what they know, they way they choose. Mine offers me Ibrance with little else. Three years ago, Ibrance was charging $17,000 per monthly doses for one person. It might be over $20, 000, now, . This happens be one of the few things I know for sure about any of these drugs! My oncologist tells me that it is okay because the insurance pays for it. It is not really okay with me, but, then again - - --.
I'm PIK3CA E545K and I understand that a PIK3CA mutation indicates a targeted therapy of Pikray. My oncologist is pushing Ibrance over Pikray. I ask why. She tells me that the side effects of Pikray are worse than Ibrance. She tells me nothing about the effectiveness of one or the other or of any of the other drugs in that category, nothing about how or why they work in a certain way. That is ALL she tells me. I am recovering from having had six cancerous lesions removed from my liver with the surgeon going through my lung which was collapsed and had a air in where it did not belong. After the surgery, another PET scan was done and two more lesions were found. Today, the oncologist expected me to have the scheduled Faslodex treatment . When I refused because my body needs time heal, she was disconcerted and pushed for the treatment to occur as soon as possible despite the fact that the treatment is no longer working. (It has been scheduled for two weeks from now.).
My brain is foggy and cannot sort all of this out for myself. I learn much more from this forum than from the health professional that has been assigned me. Given this little information, what treatment would you pick?
Ibrance and Faslodex. Also, without insurance or Medicare, the latter of which does not cover Ibrance since it is a specialized drug, it is $12k a YEAR. Not a month. I have no idea what the cost of Piqray is. I am pretty sure that is not covered. And Piqray does have more side effects, from what I hear. Faslodex is a estrogen inhibitor. Ibrance is a cancer blocker, the latter of which is a very simple explanation. One does not replace the other. They work in tandem with each other. That is why your oncologist is suggesting that treatment. And she was upset about your not taking the shots as you need those every four weeks to keep the estrogen from feeding your tumor. Hope this makes sense.
The Faslodex injections are no longer working and it is a question of the choice of kinese inhibitors to be added to the Faslodex that I am questioning. I was not suggesting replacing one with the other. There is not much point in having injections of a drug that no longer works by itself any longer into a extremely compromised body.
I presume you write about a price of Ibrance to the patient. I write about the total cost of Ibrance for a month's supply, quoted to me by an Ibrance representative, three years ago. Ibrance has been offered to me for free.. I asked my oncologist about the Caris testing. She knew nothing about it and did not offer to investigate it further. I left there disappointed that there was no further information to me from the oncologist. I am in exactly the same place that was before the consultation, yesterday.
How do you know Faslodex is not working? Was your estrogen level tested? Faslodex does not work on its own. It needs either Ibrance, Piqray or something else. You talk about costs. Have you looked to see what ins is charging for Faslodex? It is not cheap. I assume you have had your tumor tested to know Piqray would work. I have yet to hear of a patient who starts with that. Ibrance is typically first. And do you know the cost of Piqray?
Yes, Faslodex can be taken on it's own until it does not work any more which is where tam at now. The results of the Foundation test showed a PIK3CA E545K result. Pikray is named as the targeted therapy.. Because there are twenty-eight kinase inhibitors to choose from, there may be others that are appropriate. I would like to know about them but was not given any further info.
Not sure what hospital you are at...for MBC MSK typically starts with Letrozole/Ibrance or if you already have failed on Letrozole then Faslodex/Ibrance. From what I understand that is the protocol to start with. They work together, not alone.
Hi JJ
Ethics are clearly important, but when one's life is at stake there are mitigating factors. The cost of cutting edge drugs like Ibrance, plus the insurance and healthcare disparities in this country are major moral issues. That said, as a stage 4 cancer patient I would NOT refuse a proven and potentially life extending drug with mostly minimal side effects due to principles alone.
There are many treatment options--but even if your doctor agreed to the Caris test, it takes about a month--and a biopsy, to get results. In the meantime, you need to be on treatment. Especially as your body is compromised. Ibrance is very effective for many people. And any drug you are put on will be made by one or another big Pharma. Even if a drug is generic now, at one point it was high cost. That is how the system works.
To be blunt--and I speak as a progressive, it is tempting to label big Pharma as "evil," but that is unhelpfully reductive. There is a profit motive, and some--like the Sacklers at Purdue Pharma deserve to be taken down; but most are staffed by dedicated scientists who really do want to prolong lives. The profits on new drugs in part go to fund this. More and more women with MBC are living longer due to work these companies are doing. The system is tragically flawed, but it won't change in our lifetimes so in the meantime why risk my life to stand on principle? I am thankful every day for science and for researchers.
If I was in your shoes, I would not wait another second to get on the most effective--and least toxic, treatment possible. Ibrance--and all the CDK4/6 inhibitors, are, for most people, easily tolerated, highly effective drugs. It sounds like you will be able to afford it. The longer you wait, the more chance the cancer has to spread--and get to a point where it's even harder to treat.
I have not taken Piqray, and don't have the mutation, but have read accounts from women here and elsewhere that it is not easy. I have taken Ibrance and wish it still worked for me as it was very easy--and kept me stable for over 2 years.
If I were you, I would take your oncologist's advice to get on the Ibrance--or another one of the CDK 4/6 drugs, and whatever estrogen blocker she suggests if Faslodex no longer works, right away. Hopefully that will stabilize your situation and buy time to seek a second opinion, have a more detailed discussion about the Caris test etc.etc. to see what else is out there.
But please, please take urgent steps to stabilize the ship. That is the priority.
On the day of the ablations/surgery, when, after the procedures, a PET scan was done and two more lesions appeared, it was decided at that time, to wait till after another PET scan was done on March 27 to decide the next move. A decision has to be made concerning which of the two possibilities will be added to the Faslodex, now that the Faslodex is no longer working. It is between Ibrance and Piqray. I had hoped for a discussion of other kinase inhibitors but that will have to be reserved for some other time. There is no point in having a treatment of Faslodex which is no longer working alone, especially since I'm still healing from the surgery.
That makes sense. And again you can start on Ibrance + Faslo or whatever then look into options. It's all such a pain. And I always feel I am operating on less than full information, even though my doctor is pretty communicative.
I too feel as if I am stumbling in the darkness of ignorance even though I spend a lot of time on the computer trying to learn as much as I can. Someone in our club remarked that she is sorry for not having done more science in college. I am right there with her.
Hello, I’m from the ovarian cancer arm of health unlocked. I have mets to my lung and liver. I had hoped to get into a clinical trial at MD Anderson, but my kidneys crashed and I was told no clinical trial would accept me. However, the oncologist suggested folate receptor testing, which is included in the Caris testing. Another OC patient encouraged me to have the testing. MD Anderson has sent off a bit of my original tumor for testing. My OC friend’s test results showed that a combination of Avastin and Keytruda (if I am correct) would benefit her. After one treatment, her CA125 marker was reduced by half. She had a bit of new tumor growth obtained when surgeons had to do a procedure on her bladder and that is what Caris tested. I hope this information is of some help.
Best wishes from Louisiana,
Sashay
I hope this new testing will be of benefit to you. The longer we live the better the treatment options and methods of determining best treatment options get! I envision a day that scans will be a thing of the past and biopsies and blood work tells us all we need to know! Shalom
Yes. Had a bit of a scare with the insurance company to cover but the results were very informative. Came back 1% PR+. Was put on Ibrance with Fulvestrant injections. No issues except it did not work. No surprise given the Caris report. Moved on to Piqray, very high fever (103) and severe rash head to toe. Not only did it not work, cancer spread. I kept asking, "look at the Caris report, I'm triple negative that is why the meds are not working!"
Now on Capcitabine and tumor markers in normal range. Very bad Hand/Foot syndrome Doc playing around with dosage so I will stay the course!
Wow. Great that she ordered that for you.
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