I’m lucky. My fence is broken, but it can be fixed.
My diagnosis is Non-bulky, Stage IE, (IPI: 1), non-germinal center, KI-67 80%, double-expressive, DLBCL.
My understanding of what I have is:
- Non-bulky – tumor is less than 10 cm
- Stage 1 – the cancer appears to be in one place in my body (among other positive factors)
- E – the cancer tumor is extranodal – meaning the tumor grew outside of the nodal area in one place (for me, my left latissimus muscle)
- IPI:1 – I have a low risk 0-1 (which is good) on the International prognostic index
- non-germinal center – there are “germinal centers” that are sites within the lymph nodes and spleen. My cancer has cells that originated from outside of these centers
- KI-67 80% – this means that a protein involved in cell replication (KI-67) has been identified and the tumor is “high grade” with respect to growth. This is not necessarily “bad” because it can mean that the cancer may be very receptive to treatment (chemotherapy) as it is a hungry & greedy son-of-a-bitch
- double-expressor – DEL or dual expression of oncogenes (genes that can turn a cell in to a tumor) MYC/BCL2 means that each of these is expressed by my tumor.
Not to be confused with Double-Hit (DHL) which may have a somewhat worse prognosis. DHL is when there is chromosomal re-arrangement with MYC/BCL2 and/or BCL6. I am NOT DHL
- DLBCL – Diffuse Large B-Cell Lymphoma “is a cancer of B cells, a type of white blood cell responsible for producing antibodies”
Every cancer professional I talk to tells me this is the cancer that you want to have.
I believe them. I’m just not excited about having it.
I’m not going to get in to my prognosis – let me just say that we’re going for a cure or complete remission.
A cure is possible as I’m young (for this cancer), the single tumor was found early. (Thank you, Gina.) I also probably have the best medical team in the world for this particular type of cancer, led by Dr. Paul Hamlin. Thank you MSKCC for taking me.
I start R-CHOP on Thursday, May 2nd, 2019. It takes 460 minutes (about 7 hours) to infuse me with the chemo:
H: Doxorubicin Hydrochloride (Hydroxydaunomycin)
O: Vincristine Sulfate (Oncovin)
- R Rituximab – is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells. When it binds to this protein it triggers cell death.
- C Cyclophosphamide – is a medication used as chemotherapy and to suppress the immune system. It is in the alkylating agent and nitrogen mustard family of medications. (Don’t be surprised if I ask for hot dogs and hot pretzels.) It is believed to work by interfering with the duplication of DNA and the creation of RNA.
- H Doxorubicin Hydrochloride – is in the anthracycline and antitumor antibiotic family of medications. It works in part by interfering with the function of DNA.
- O Vincristine Sulfate – It works by stopping cells from dividing properly.
- P Prednisone – is a glucocorticoid medication mostly used to suppress the immune system and decrease inflammation. It is used to treat high blood calcium due to cancer and adrenal insufficiency. I hear that it might make me crazy…what’s the baseline on that exactly? Lol
So there you have it. That’s what I have. And that’s what we’re going to do about it.
Four rounds of chemo every 21 days followed by 2 rounds of just the Rituximab.
Then I’ll have a PET scan to see how I’m doing.
It is a chronic disease. It will probably come back – maybe several times in my life. But it can be beaten, each and every time.
I’ll be happy to knock it out of my body on the first blow, but I need to be realistic.
I’m lucky. Lucky to have the love and support of my family and friends. Lucky to have access to phenomenal health care.
I’ll be happy when I can go play hockey with the boys again.