How to Survive Stage IV Cancer, Part II

Baby, I know hate is always waiting at the gate
I just thought we locked the gate when we left in the morning
I was told that war is how we landed on these shores
I just thought the drums would all be loud warnings
Vampire Weekend, “This Life”

Part 2: Know Your Data, Know Your Story

Past and Future

The future of cancer care is in individualized care and precision medicine. That is what all of the headlines and top researchers are saying. Treatments are being developed now that target cancer mutations, and not necessarily the type of cancer itself. New immunotherapy options have been approved, and are being tested in various clinical trials across the country. And then there are vaccine trials, where they test an individual’s tumor biology and then use that to develop individual vaccines. There is a lot going on right now.

The current of cancer care is what is called standard of care. This is literally a textbook that your oncologist has that serves as a step-by-step manual for how to care for your particular type and stage of cancer. The day that you enter your oncologist’s office, the first thing that he is going to want to do is order some scans in order to finish staging you. If the cancer shows up anywhere other than the primary source, your disease will be considered to be metastatic and you will be classified as a Stage IV cancer patient. If not, you will be staged at a subcategory of I, II, or III, depending upon a number of factors, such as the size of the initial tumor, number of localized lymph nodes positive for disease, etc.

If you have Stage III or lower, there is good news for you. Standard of Care will most likely still be your best option for success. This means that the treatments that you will be receiving for the next few months up to the next year will be in the book and will most likely carry you successfully to the other side. Generally speaking, the higher the Stage at diagnosis, the more likely it is that you will have a recurrence. If you have, for example, Stage IIIC colon cancer the chances of the cancer coming back in the next two years after achieving NED are greater than even and you need to stay vigilant in your screening and protections against recurrence.

Know YOUR Data

If you have Stage IV, I’m sorry to inform you that your outlook is looking bleaker. How bleak depends first upon the type of Stage IV. Oh, and dozens of other factors that will be unique to you. This is where personalized treatment suddenly becomes very important. You need to know YOUR data.  The baseline (agnostic) 5-year survival rate for Stage IV Colon Cancer is in the 10-15% range.

Here are all of the things unique to my cancer that I am aware of:

  • My Primary Tumor revealed a KRAS G12V Mutation
    • This means that my cancer is likely more aggressive
    • This means that my cancer has a known resistance to two approved chemotherapy options for colon cancer: Erbitex and Vectibex.
  • My Total Mutational Burden is 5
    • This is considered to be on the high side of “low,” with “medium” kicking in at 6.
    • The higher your burden, the more likely you are to respond to immunotherapy and individualized vaccines.
  • My tumor was Micro-Satellite Stable, and opposed to Instable (MSS vs. MSI).
    • Most CRCs are.
    • This means that I am less likely to respond to immunotherapy, and am not eligible for Keytruda, which has been approved for MSI-H only.
  • 11 out of 18 of my regional lymph nodes were positive for adenocarcinoma at diagnosis.
    • This means that it is far more likely that there is microscopic cancer floating around in my system and increases my likelihood for recurrence or spreading to another location.
  • My primary tumor was found in the sigmoid region of the colon.
    • This is technically considered to be a “left-sided” tumor and therefore carries a better overall prognosis than a “right-sided” tumor.
    • Hey! I got one good thing!
  • My cancer has progressed into my liver and my peritoneum.
    • The liver is the most common location of metastasis for CRC
    • Spread to the peritoneum occurs in only about 15-20% of cases.
    • Any peritoneum involvement is considered to darken prognosis. The reason for this is because peritoneal mets are very hard to treat and many oncologists and surgeons believe that no matter what, “they always come back.”
  • My CEA (most-commonly used cancer tumor marker for colorectal cancer) was 1.0 at diagnosis.
    • This is considered to be in the “normal” range. This means that it cannot be used as a reliable indicator for success of chemo treatment.
    • If your CEA number is elevated at diagnosis (higher than 2), then it may be useful as a reliable indicator for you.
    • Prior to my surgery in Cleveland, they took a measurement of a different tumor marker: CA 19-9, which was revealed to be elevated. This marker is usually more associated with the peritoneal/ pancreatic area. A subsequent drop after surgery revealed that this is a marker that I now can begin using as a means of measuring the effectiveness of treatment on my peri mets.
    • Knowing this prompted me to advocate for regular CA 19-9 measurements from my oncologist’s office and it correctly spiked to signal the ovarian met was increasing. The last reading indicated that CA 19-9 had begun to drop. Now the question. Do we stay the course, and see if shrinkage begins to occur or bail and move on to the next treatment?

That’s a LOT of information, but you must know it. All of it. Because your doctors will not review your record before you walk into the room. They will not remember your profile. This means that the readily-prepared treatment response that they have when they walk into the room WILL NOT be taking all of these things into consideration. They will be based, primarily, on Standard of Care.

When I look at all of the data above, however, I see a story. It’s a story of someone who is going to quickly run through the reduced Standard of Care chemo options available. It’s the story of someone who is going to ride SOC to a date that falls short of the 27 month median life expectancy.

  • Because I don’t have as many chemo options.
  • Because I need to be more strategic about lengthening the capacity of the chemo options I do have.
  • Because I will benefit the most by looking out for trials in development specific to my tumor mutational profile.
  • Because trials might reject me due to my peritoneal involvement.

In summary, this is the story of someone who HAS to be both more strategic and aggressive in order to buy themselves more lifespan. And the best way to get me that additional lifespan is surgery.

Your surgeon will not be thinking about that. Your oncologist will not be thinking about that. This is why you have to.

Only YOU know all of your data. Only YOU can tell that story. If I don’t tell that story I will not get the surgery. If I don’t tell that story, there will be no discussions about how to maximize and stretch out the chemo options that are available. The doctor will see an allergic reaction and move me on to the next treatment instead of coming up with a strategy to reduce or eliminate the allergic reaction and stretch out the current cocktail.

Getting the Data

Some of the data listed above will be on your biopsy report. Don’t have a copy? Ask, insist upon getting it.

Some of the data listed above will be on a second report, which is only typically ordered if you have Stage IV cancer. This is a Genomic Testing report. It tests for any number of Genomic mutations in your tumor that could impact treatment decisions. There are only a couple of companies that due this testing, but the most common name is Foundation One. If you are Stage IV and do not have a copy of this report, you need to get a copy, study it, and keep it in your records. If you are Stage IV and your oncologist has not ordered this testing, REQUEST THAT GENOMIC TESTING BE DONE IMMEDIATELY:

  • If you have a KRAS mutation, you can actually be harmed by taking Erbitex and Vectibex, which are currently in the SOC book as second-line CRC treatment options.
  • Knowing your tumor mutational burden and your entire list of mutations will be critical to knowing what trials will be best for you and most trials will require that you have this testing done.

If you don’t have information on your CEA level at diagnosis or the location site of your tumor, ask your doctor. All of this information should be clearly explained to new Stage IV patients, but sadly is often not.

Part three will be about continuing to monitor your data throughout treatment, such as knowing your scans, keeping records and continuing to update and advocate with your physicians.

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