Home » My Health Updates » Some background on Cometriq (Cabo) with regard to kidney cancer

Some background on Cometriq (Cabo) with regard to kidney cancer

Posted by on February 21, 2013 in My Health Updates, Targeted Therapies (Sutent, Afinitor, Cabo, etc.) - 19 Comments

Chris’s response to Cabo has generated a lot of interest in the drug. So, based on our research and experience, I thought I’d write a little about the drug – who should consider the drug and how folks can get access to it.


Cabozantinib (marketing name Cometriq, formerly known during clinical trials as XL-184) is an anti-angiogenic drug that inhibits the tyrosine kinases c-MET and VEGFR2. It’s similar to other TKIs, like Sutent or Votrient, but the addition of the c-MET inhibitor is what makes it novel.

Chris, Dena’s editor, here: Dena, no one knows what you just said.  At least I don’t. This is a blog, not a medical journal.  Stop trying to show off with fancy words like “kinases.” And “is.” Talk English. Or some corrupted version of it.

Chris, I think you’re underestimating our readers.  Who amongst us doesn’t love a good kinase?

How would you like a good kick in the kinase? 

Okay, okay, for you, I will simplify. Cabo is similar to other cancer drugs that are currently used for kidney cancer.  These are oral drugs that help block blood vessel growth to tumors.  Without the nutrients from the blood vessels, the tumors will stop growing – or even better die. Cabo is like these drugs, but it’s different because it uses a cellular pathway that other drugs don’t use.

Once a drug is approved by the FDA, it’s given a marketing name.  So, even though we followed it in trial by its generic name – Cabozantinib, or Cabo for short – the official brand name is Cometriq.  To give you another example: Tylenol is a marketing name, the generic name is Acetaminophen.

The developer and manufacturer of the drug is a San Francisco-based company called Exelixis. The drug is being tested in many cancers, including prostate, lung, ovarian, melanoma and breast. There’s a lot of excitement about it in the cancer community.

On November 30th, the drug was approved by the FDA for Medullary Thyroid cancer. The reason it was so quickly approved for Medullary Thyroid is because there were no other treatments for that type of cancer (making the approval process much more rapid). Phase 3 trials for renal cell are expected to begin sometime this year.

Who should take the drug:

I know that folks are excited, but Cabo is not for everyone (hah – I sound like a commercial!). The drug can be tough, perhaps more so than some of the other drugs like Inlyta and Votrient. However, Cabo works well in two subsets of patients:

  1. Patients with metastatic bone disease;
  2. Heavily pre-treated patients.

Chris falls into the second category.

Heavily pre-treated?  Is this like a bad laundry stain?  What the heck does that mean?

Heavily pre-treated refers to patients who have tried many different treatments but haven’t been successful. In other words, Chris, you’ve failed us one too many times. You’re like the fifth-year senior of cancer patients – and this is your truck driving school drug. (Fortunately, you’re doing great with it!)

Dr. Hammers told us that they believe that adding a c-MET inhibitor, as they have done with Cabo, somehow makes the VEGF inhibition work in patients who previously didn’t respond to other treatments like Sutent and Inlyta. That’s one of the reasons that they are trying the drug in lots of cancers where VEGF inhibition had previously been ruled out. So, for a patient who didn’t respond at all to a VEGF inhibitor like Sutent or Votrient as well as to an m-TOR inhibitor such as Afinitor, Cabo would then be a good choice to try. But only after the other drugs had been ruled out. If you responded well to Sutent, but failed after a year or so, Inlyta would still be a better second line choice.

I’m not even going to respond to that.  For those of you who understand what Dena is talking about, you deserve this blog post. For folks like me who prefer their blogs jargon-free: If you’ve tried everything else and nothing has worked, then give Cabo a try.

How to get access to the drug:

  1. For patients with bone mets, the first and best way to get the drug is through the clinical trial that is being run at Mass General in Boston. As I mentioned earlier, Exelixis is also planning to open phase 3 trials sometime this year, which should open up more locations around the country. Hopefully these trials will give lots of people access to the drug.
  2. For heavily pre-treated patients like Chris, who don’t qualify for the drug in trial, the other option is to have your doctor write a prescription for Cometriq in the off-label setting.

Just so Chris doesn’t have to interrupt me – “off-label” means that an FDA-approved drug is being used to treat a disease for which it is not approved.  Since Cabo/Cometriq has been approved for thyroid cancer but hasn’t been approved for kidney cancer, we’re getting the drug “off-label.”

Note: Chris just suggested that an alternative way to access the drug is to get it on-label – that is, get thyroid cancer. I will point out that we decided against this option ourselves.

The downside to off-label usage, however, is that insurance might not cover the drug – and it’s an expensive drug. The cost of the drug is $10,700 per month. So the insurance question is a big one, though there may be financial assistance available too. What we are considering, if our appeal weren’t to work, is selling our children to a sweatshop in Southeast Asia for a year or two. (What? It builds character.)

The drug is only available through one pharmacy in the country, a specialty pharmacy called Diplomat Pharmacy Services. So if your doctor is willing to write the prescription, you’ll work through Diplomat to get the drug. They are amazing and will help you through the process. The folks at Exelixis were also fantastic.

The bottom line is this: I still would encourage folks who can qualify for the drug through a clinical trial to do so.  Off-label is not the ideal method – aside from the insurance issues, I believe in the FDA process.  Trials give us the ability to know correct dosing, to manage and mitigate side effects, and determine when and how drugs should be used. But for people like us who really have no other option, it is good to know that there is a way to get the drug now. For some, as Chris previously said, Cabo may indeed be a miracle drug.

  • janet

    You two are like Laurel and Hardy. Try out a comedy act on America’s Got Talent and maybe you can get a Vegas show to pay for the drug. Keep up the good work. Prayers sent your way.
    Janet P. KC fighter

  • Ellen

    I am kinda new with all of this so, sorry if this is a stupid question. :) would my dad (battling stage IV renal with spinal mets) have to go all the way to Boston to participate in The trial or can they ship it and work with his doctor here in Florida? Thanks for anyone’s input! :)

    • Dena Battle

      Ellen, it is a very smart question. At this point, he would have to travel to Boston but phase 3 trials are opening soon and that will open up the drug to new locations. There might be other options for your dad – if you’d like to discuss further, send me an email : dena_battle@yahoo.com

  • Leticia Hahn

    Thanks! When reading clinical trials, one or two words you may not be familiar with, make the whole thing difficult to understand. Thanks for the info! Keep kicking butt!

  • Becci Saporito

    Dena, thanks for explaining so clearly. Although I had read up on Cabo through other sources, your explanation made it all much clearer. I am indescribably joyous over Chris’ renewed physical strength and as always, awed by both your mental strength. There are so many of us, many you don’t know, who pray and pray for your family. Have fun and relax and enjoy on your getaway. Much love to you all

  • Minnie

    Hi there, there is something I need clarified, why is Cabo a last resort drug? Would it not be more effective to start with it right away when the cancer is still young and naive or is it in fact only effective on a punch-drunk cell? Instinctively I believe a young and nervous cell is easier to subdue than a battle hardened veteran. But there must be a reason why treatments follow a certain route and I would just like to understand what the reason is.
    Thanks for this informative blog
    Best wishes

    • Dena Battle

      Minnie — the reason is just that it hasn’t gone through all the FDA trials yet. It’s possible that they’ll move it up to a “first line” therapy. But, we don’t have all the information yet. So, for folks dealing with a new diagnosis, we’d still encourage them to go with an FDA approved drug.

      • minnie

        Thanks Dena. I’m still a happy co-habitant with NED, (minus one kidney) but I want to be prepared, so every bit of information is important to me. Thank you very much for responding to my query.

    • Bill Wine

      I think it may have to do with the pharmaceutical co needing to get the drug tested and to market as quickly as possible. For Cometriq they went with MTC because they got great results and the existing standard of care, Caprelesa, had a black box warning. The FDA approval is easier because of this. Exelixis has many drug studies ongoing with this compound but to date I do not think any of them are for 1st line treatment. Usually this is partly because if you are on an approved drug and it’s working and the side affects are tolerable you are less likely to enroll in a study for an unapproved drug. Cometriq is also a pretty powerful drug with some nasty side effects (and several deaths) at the original doses they were studying.

  • Bill Wine

    Chris, you have a great writing style, if only your creative writing teacher could see you now! Your ability to blend humour into your posts makes me laugh out loud.

    I wanted to know, if you can say, whether or not you are taking the Cabo off label and if so were you able to get insurance to cover some or all of the costs?

    My thoughts and prayers go out to you from Arlington, VA!

    • Chris Battle

      Hi Bill — yes, I am taking the drug off-label. Currently it is only FDA approved for thyroid cancer. My insurance initially rejected coverage because it was off-label. However, they agreed to cover it after our appeal showed that my disease was responding to the drug.

  • Dori Scoggins

    Chris and Dena, have you guys looked into asking the drug manufacturer to provide you with the drug as a compassionate use? They can have all the data while you are being treated on the drug and it will benefit them later when they file for the New Drug Application for the drug to treat renal cancer. They might do it. ~Dori

    • Dena Battle

      Dori – thanks for this post. The manufacturer doesn’t have a compassionate use program, so unfortunately that’s not an option. But, I’m glad you raised it because it is a program that’s available sometimes for other drugs. I think in this case, the company is really just too small to be able to cover the cost of compassionate use, while at the same time trying to ramp up production.

  • Dena Battle

    For those who asked, we are getting the drug off-label and our insurance is covering it. But we did have to deal with an initial denial and appeal process. So, it is possible, we just want folks to know that it’s not a guarantee and that you may have out of pocket costs.

  • Karen V

    Great info. So very exciting!!

  • Bill Wine

    Glad to hear you won your appeal and good luck going forward.

  • RachaelEJ

    I am a 24-year old kidney cancer patient, it is stage 4, metastatic to my spinal vertebrae, abdomen, and pelvis. I was on Sutent for about 5 months and it had halted the growth of the tumors but wasn’t shrinking them, so we moved onto Inlyta.
    I had a huge shrinkage in May 2012 and was finally able to undergo a radical
    Nephrectomy and salpingo-oophorectomy. I have had evidence recently of leptomeningeal disease and growth in an L4 tumor, so I was switched to Cabo 3 weeks ago. How confident are doctors about using this drug for kidney cancer before FDA approval? I am just so curious about how the trials are going! Thank you for posting this info, it was very helpful!

  • RachaelEJ

    I was looking at the rest of your site and saw that your husband had passed and I can’t begin to tell you how sorry I am. I will keep you and your girls and the rest of the family in my prayers. This one article has inspired me more than you know, and I’ve decided to start blogging myself. Kidney cancer needs a voice and I am so glad that your husband was giving it one. Best, Rachael from Ohio

    • Dena

      Thanks Rachel — I hope you’ll send me a link to your blog. If I can help in any way please feel free to e-mail me! Dena_battle@yahoo.com

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