I Was Prepared to Die: When a Negative is Positive

I have been running out of FDA approved lung cancer treatment options for quite some time.

It's not a quick process and it's something you have to prepare for and live through as you know the end result is, no more treatments available.

As you work through this you can experience many emotional situations while trying treatment alternatives.

Testing out a treatment takes several months. 

 The cancer may respond to a treatment but then it may find ways to resist the treatment and progress.

For months, my oncologist and I have been discussing and reviewing options, or the lack of options, that I have to treat my stage 4 lung cancer.

Cancer has spread to my cerebrospinal fluid (,CFS) it's called Leptomeningeal disease (LMD). According to the National Institute of Health,  the survival of LMD is very grim, from weeks to a few months without treatment.

When we decide a treatment option we need time to try the treatment to see if it is effective. This is not a fast process. We make a decision, try the treatment,  wait to get a scan to check for progression or regression then reassess. 

If it's not working we start this process over again.

 The two latest treatments I tried were an iv chemo, that I had a severe allergic reaction to and Opdivo immunotherapy infusions.

I tried Taxol iv chemo but am severely allergic. My PDL-1 is between 50-60. On paper this looked like my solution So we decided immunotherapy would be the trick.

But after several months of infusions and waiting for follow up scans, it didn't work.

Radiation treatment was never discussed. There was no reason to talk about it. But in the last month or so I've had a major change in my spine causing numbness in my glutes similar to something called, Saddle Anesthesia.

When I reported that and the amount of hours i've been sleeping every day (approx 16-18) and we reviewed my unintentional weight loss at a routine oncology appt, my oncologist suggested admitting me to the hospital so I could get a spine MRI and chest ct sooner than any outpatient appointments.

The radiation treatment decision happened so fast. I had 4 treatments while I was admitted in the hospital and had an additional treatment after discharge. 5 total to the lumbar section of my spine for this round.

New symptoms are not welcome. But this negative is what became a positive.

The radiation treatment option changed

the perspective of everything and how I would be treating my lung cancer.

Before this, I didn't have any symptoms to treat. Now I did. So if I'm treating the spine mets (metastasis), I should try to find a possible way to treat the lung mets too.

My oncologist and I decided amivantamab iv chemo will be the next treatment for my lungs.

It's going to be a red tape process. It is FDA approved for a different subtype of EGFR Lung Cancer. My oncologist warned  me that insurance will deny it. If or when this happens,  he and his office pharmacist will request free use from the manufacturer.🤞It's just an application process and waiting game right now. 

Yes,  it's been a whirlwind. One minute my oncologist  is apologizing for no more options and  telling me to contact hospice. I'm mentally ready to accept my fate. The next, new treatment options, hope and information!!!

Keep the positive thoughts and prayers coming. I have no doubt they have entered the Universe and have helped me survive long enough to find these alternative solutions.