Stable CT scan. Five years+ living with Stage IV NSCLC

[Jenniferroseolson]

This is an excerpt from a caring bridge post I made yesterday. I also included a whole bunch of language stuff about covid-19and the need for each of us to do our part to protect one another, but I’ll leave that there. I am grateful that I just received happy CT scan results that my chest, abdomen, and pelvis look terrific for this Stage IV lung cancer patient: scarring, pneumonitis, necrotic femoral head in my hip, and other stuff that we keep watching. The images do not show any new active cancer growth. The immunotherapy (Opdivo) that I began almost a year ago is doing its job well. I receive an infusion every month. Unlike the chemotherapy of the prior years, I do not have a predictable schedule of extra-difficult days. Instead, I have had some unwelcome, big, surprise side effects (abdominal fluid, elevated liver enzymes, hypo pituitarism, secondary adrenal insufficiency). In the past month or so, though, my multidisciplinary team has closed in on the right doses of medications to manage what can be managed. I still struggle especially with imbalance, but alongside the great CTscan news today was my oncologist’s remarks that, at this point, we must assume the imbalance is a result of the large lesion that was removed and subsequent radiation treatment in my cerebellum: e.g. we don’t have treatments to address these struggles other than the medication that I am taking that suppresses my central nervous system. I don’t really know from one day to the next whether my balance or hips will allow me a nice walk or not, and I can’t seem to find any rhyme or reason to it. This Thursday, I will have my now-quarterly brain MRI to make sure nothing new is growing there either. All things considered, my story is one of great hope for people newly diagnosed with lung cancer, of which I know too many. I have so much for which to be grateful.

[Denzie Moderator Volunteer]

Overall, a pretty good report and your experience will bring hope to others.

I send hope for a clear MRI, and that your balance issues are controlled soon. You’ve come through so much and you’ve earned s break.

[Miranda_GO2 Partner]

Thank you so much for sharing and please know I am thinking of you today as you go in for your brain MRI.

[Seaspray298]

Wonderful news.....hope the MRI was boring! Mine is Friday and it never gets easier. One day at a time.

[JanetteR57]

sorry to read of your struggles with imbalance and pain - but the CT scan results are very promising and as you state, some of these side effects can be treated better than others. I haven't had radiotherapy but also suffered adrenal 'chaos' after steroids were stopped too suddenly some years ago and the side effects were more frightening to me than the original unexpected lung cancer diagnosis 2 years earlier. keep up your spirits and hope you can manage to keep mobile and active for as long as you can....