A Real Pain in the Neck

Quite literally- a Serious Update for Once

Excuse the quality, this was from the before times

“Yup, that’s me. I bet you’re wondering how I got here. Let’s go back and see.”

In case you’re new here and don’t want to go through the history, here is a quick rundown:

A Brief History

• January 2022

  • Kidney Cancer discovered in right kidney

• April 2022

  • Right kidney removed

  • Lab determined it was stage 3 Papillary Renal Cell Carcinoma Type 1

• Rest of 2022

  • Scans show No Evidence of Disease (NED)

• March 2023

  • Scans (and a biopsy) show that cancer is now Stage 4 as it has metastasized to lymph nodes throughout my chest and abdomen and most likely my thyroid.

  • Start on Opdivo and Cabometyx

• Fall of 2023

  • Scans show the meds aren’t working

  • Switch to Avastin and Erlotinib

  • Scans remain stable until October 2024

Now

So October 1, 2024 I had my normal three month scans (CT) of my chest, abdomen and pelvis WITH the added bonus of a CT of my cervical spine. The cervical spine is the top portion of your spine, essentially your neck.

This portion was added on due to very recent shoulder and neck pain that has been nagging me for a few weeks. Figured I’d rather be overly cautious and my Oncologist agreed.

Let’s run down the list:

Pelvis

Abdomen

Chest

Spine

So yeah. My spine has lytic lesions (destruction of an area of bone due to diseases like cancer) in two spots C1 and C3 with cortical destruction and adjacent mass(es). Remember our spine guy up top? Well you can see where C1 and C3 are here:

My cancer is currently like:

So yeah…

What We Know and What Happens Next

So right now we know it has metastasized to the spine as well (all other areas were stable). I have a PET Scan tomorrow and an MRI in two weeks.

Quick Detour on the different types of scans:

• Computed tomography (CT) scans use X-rays.

• Magnetic resonance imaging (MRI) scans use magnets and radio waves.

  • Both CT and MRI scans produce still images of organs and body structures.

• PET scans use a radioactive tracer to show how an organ is functioning in real time. PET scan images can detect cellular changes in organs and tissues earlier than CT and MRI scans.

The PET scan can be unreliable at times but from what I am told it is reliable for bone mets (shorthand for metastasis, or spread from original site).

These scans will help determine more accurately the extent of the spread and help further plan treatment going forward.

Treatment Plan as of Today

So pre-scans the plan is this:

I am going to start Xgeva today. Xgeva will help strengthen my bones to help prevent further weakening of them by the cancer. It does not fight cancer but rather fortifies my bones to try to prevent further, quicker spread. More info HERE

I will have a radiology consult sometime in the next week or so, presumably after the scans pinpoint the exact precise locations of the spread. I’m not sure what type or kind or radiation but I’ll update as I know more.

I have discontinued Plan B of my meds Avastin and Erlotinib. While they were helping control the cancer, the doctor believes that the spine mets show the meds have come to the end of their efficacy.

Plan C for my meds is Alunbrig. Alunbrig is a targeted drug used in a type of lung cancer that has metastasized. My specific kidney cancer mutation is shown to be targeted by this medication as well. However, since it is not prescribed for kidney cancer we will be appealing to the company to hopefully cover the costs. More info HERE on Alunbrig

The above gif is somewhat true in that I know what some of this shit is. But mentally I’m mostly numb right now. When I read the results it was like a movie- my phone fell and the tears started. The results essentially said the MRI and etc were needed as this is highly suspicious for mets. But I knew, I knew that they can’t say it on the report without a tissue sample (when even available as I am guessing the spine is not a great biopsy site). And I knew it when the doctor called as he was heading out for vacation to take his time with me and lay out a treatment plan at hyperspeed essentially. It’s confirmed. These scans will just show how bad it is and if it’s beyond the cervical spine.

Yeah that’s about it for now. I’ll update as I have more but for now….

-Joe