Wait, There's More....Cancer

On to Plan E?

Alunbrig, we hardly knew thee. Alunbrig has left the chat.

So why is Alunbrig being booted? Well I had my PET scan Tuesday and as I figured, the results have shown more spread and growth. How did I figure this? Pain, symptoms and with every new regimen faith fades. Now for everyone saying don’t lose faith- Who has more faith in Plan D than in Plan A??? I still have hope and won’t give up but I have to be realistic.

So let’s look at the picture:

Clearly a 100% lifelike image of me

• Purple spots: Pre-existing areas of metastasis in my lymph nodes scattered throughout. The chest and abdomen are an approximation. Every scan uses words like “multiple, scattered, numerous” and so on.

  • The purple spots on the hip and pelvis did shrink a little BUT that is from radiation. Same with the ones in the upper neck.

• Blue spots: These are nodes in the lungs that have been there for awhile but have not gotten any better. Now they “light up” a little more, meaning the radioactive tracer used for the PET scan was absorbed more by them. This could mean it’s related to the cancer spreading potentially. My oncologist said it’s not always a reliable indicator that the cancer is spreading however we still need to be concerned with the overall situation- in the lungs or not.

• Red spots: These are the new areas of spread.

  • Left posterior iliac bone aka my left hip towards the center it seems.

  • T9 vertebrae (mid back)

  • Left mid proximal humeral diaphysis aka my left upper arm bone (humerus) shaft near where it connects to the shoulder.

So what now. Well as I said before Alunbrig is done. Let’s look back at our plans laid out to try to kill this cancer:

1. Radical Right Nephrectomy

2. Opdivo & Cabometyx

3. Avastin & Tarceva

4. Alunbrig

5. Lenvima & Keytruda

Keytruda is an immunotherapy and Lenvima is a targeted therapy also known as a tyrosine kinase inhibitor (TKI). The hope is I start these in a week or two weeks (insurance willing of course). Lenvima will be a daily pill and Keytruda will be an infusion every three weeks.

Side effects are looking to be the same or similar to the Opdivo and Cabometyx regimen. As a refresher- digestive issues, diarrhea, fatigue, nausea, skin issues, slowed healing, neuropathy and just about anything else probably.

Right now I’m okay? Maybe? Again I was not shocked but it still sucks and is depressing. Physically I am in pain. Some days are better than others. I often try to think of how I feel in percentages. I no longer get to 100% ever. I think at best, AT BEST, I get to maybe 65-75%? And again, this is at best. Most days I’m trying to keep it above 50% and just function. My muscles all cramp more- arms, legs, back and more. My hips and back are just never great. I’ve come to terms that eventually I will need a cane, maybe even more assistance as time progresses.

Mentally I am alive. I was numb until yesterday afternoon and it all started hitting me. Expected or not it sucks. I point blank asked my oncologist if this news changes my prognosis. His response:

“Anytime we have spread and have to move to the next treatment plan we are looking at less of a chance of treatment working. We are looking now at months most likely. If we can get a year or two that’s great.”

He has always been cautious around prognosis and timelines and reiterated multiple times that this is speculation based on past evidence and that things can change, everyone is different and it’s not an exact science (predicting timelines). But again, if you’ve been reading this blog for a bit you know my team has always been over cautious in not sharing a timeline, so this sits a little heavier with me.

I know cancer-aside there is never enough time for anyone but where I would have hoped that I was approaching mid-life I am now more than likely staring at the end that is coming. I’m not prepared for that. I’m not okay with that. My instincts are several- avoidance, spending time with loved ones, living life more presently and I’m sure others I can’t recognize yet. Avoidance will have its purpose here and there but I will try to minimize that as much as possible. Side effects be damned I want to spend more time connecting with loved ones and saying yes to as much as I can.

To be clear, I am not giving up. I will try (almost) anything that gives me more time and we’re not yet out of options. However I will never embrace toxic positivity or be ignorant to the writing on the wall- you know science and facts and such. So there is sadness and not the best outlook but there’s always a glimmer of hope.

To everyone who has reached out, donated, bought registry things and supported in any way- thank you so much. I try to get back to everyone as best I can but my unreliable cancer brain and exhaustion sometimes makes me forget. I swear it’s all greatly appreciated and I feel the love. Thank you!

-Joe