Ready to Roll

We are at the Dana Farber cancer treatment floor at Brigham and Women's Hospital. We started the first chemo drug -rituximab - at about 8:00pm tonight. Nothing really noteworthy to report yet as far treatment goes.

We met with the oncologist at about 2:30 this afternoon. We mostly just went over what to expect during treatment and setup our treatment schedule for the next 18 weeks (more on that later).

She also gave us some more details about the unusual genetic markers they found in my tumor. Essentially, she said that everyone agrees that this is a PMBCL, for a variety of reasons, including how it seems to be growing, the location, my age, etc. However, there is a a specific genetic marker whose significance they're not really sure about. (And, I apologize, this gets a bit technical and I am definitively NOT an expert in the genetics of tumors.)

So, in Diffuse Large B-Cell Lymphomas (DLBCLs), they test for three genetic markers: B-Cell Lymphoma (BCL)-2, BCL-6, and MYC (pronounced "Mick"). I can't remember which, but two of them tell the cell to grow, and the other tells the cell not to die (apparently cells have self-destruct scripts?). Obviously, these things are a bad combination. If any two of those markers around found, the DLBCL is categorized as a "double hit". This means it's a particularly aggressive form of DLBCL that does not respond as well to treatment. Ordinary DLBCLs respond to the standard DLBCL treatment in something like 90% of cases. Double hit DLBCLs, on the other hand, only respond to the standard DLBCL treatment about 40% of the time.

However, the consensus seems definitive that I do not have a DLBCL, I have a PMBCL (again: Primary Mediastinal B-Cell Lymphoma). The things is, they don't usually test PMBCLs for BCL-2, BCL-6, or MYC. First, PMBCLs always have BCL-6. And second, apparently because PBMCL is rarer and responds well to the R-EPOCH chemo treatment, there haven't been enough anomalous cases of PMBCLs not responding to treatment that there was ever a need to test for MYC.The hospital that did my biopsy only tested it because they weren't sure whether they were looking at a DLBCL or a PMBCL.

So when they tested my biopsy, they found the MYC, but now that they've determined this is a PMBCL, they don't know the significance - if any - MYC has. If this was a DLBCL, they'd call it a double hit, but there is no double hit sub-category for PMBCLs. As far as anyone knows, it's entirely possible that most PMBCLs have the MYC and there is no significance.

As far as treatment, it doesn't change anything. As I said, double hit DLBCLs don't respond as well to R-CHOP (the standard DLBCL treatment). So instead, the standard treatment for double hit DLBCL is R-EPOCH, which is also the the standard treatment for PMBCLs that I am receiving. Double hit DLBCLs respond to R-EPOCH about 60% of the time. PMBCLs respond to R-EPOCH about 90% of the time. ("Respond" means that it effectively shrinks/eradicates the tumor after the prescribed treatment.)

So, again, it could be none of this is significant, or it could be that it means this tumor won't respond as well to treatment. We don't really know. Obviously our prayer is the same no matter what: that with the Lord's healing touch, this R-EPOCH treatment will eradicate the tumor.

Please continue to pray with us as treatment is now underway.

• Pray the treatment would be effective and that it will begin eradicating the tumor.

• Pray for my body to hold up well to the side effects of chemo.

• Pray for my immune system, which will be stretched very thin by the chemo.

• Pray for Kristen (who is here with me, at least for the first night) and the boys (who are home with Grandma and Uncle Nathaniel).

Visitors are welcome to visit the hospital, BUT ONLY if you are in good health and not sick (even mildly). Just call or message Kristen or me ahead of time to see if it would be a good time.

Finally, as I mentioned before, we have our schedule mapped out for the next five inpatient treatments. They will begin:

1. Friday, November 3

2. Friday, November 24 (the day after Thanksgiving)

3. Friday, December 15 (the day after Kristen's birthday)

4. Friday, January 5

5. Friday, January 26 (with treatment over Samuel's birthday)

After the third treatment (which starts November 24), we will have a PET scan to see how the tumor is responding. That will be the first big test. Pray we would be amazed at how much the tumor has shrunk!