My brother (Dhinesh) and I are caregivers to my mother Mrs. Hemavathi Bai, aged 74, and who has been living with ALK+ lung situation since early 2016.
Brief chronology of her diagnosis and treatment followed is listed below:
- Diagnosed February 2016, followed by Genetic testing
- Two rounds of Chemotherapy during February / March 2016 (Pemetrexed and carboplatin) while awaiting Genetic testing results
- Genetic testing revealed ALK+ mutation
- Short run on Crizotinib:: April 2016 to July 2016
- Good run on Ceritinib:: Aug 2016 to Dec 2021
- Presently on Lorlatinib:: From Jan 2022 onwards (she has been on Lorlatinib for around 20 months on a reduced dosage of 50mg every alternate, due to toxicity)
Her most recent PET scan from 10/20/23 reveals a stable situation with minimal Loculated Pleural effusion (around 75 – 100ml). However she is increasingly experiencing shortness of breath, and fatigue associated with this. CT Scan performed on 10/25/23 of Thorax reveals Fibrotic areas in left upper, right middle, and right lower lobes
It appears that Lorlatinib is waning in its efficacy, and we are not sure if the Fibrotic areas in her lungs are due to drug induced toxicity. The CT scan however does not indicate ILD, but we do feel the Fibrotic lung situation is drug induced and contributing to her Dyspnea. We are not aware of any exposure to Asbestos or other contributing factors for the Fibrotic lungs
What would be the most feasible next course of action:
- Continue on Lorlatinib as her PET scan indicates stable condition?
- Discontinue Lorlatinib due to probable drug induced Fibrotic lung condition?.
- If Fibrotic lung is a TKI drug induced condition, what is the next best course of action?
Appreciate your time and inputs on this thread
Reply # - October 29, 2023, 03:52 PM
Hi Nikkam, Welcome to Grace…
Hi Nikkam, Welcome back to Grace. I'm sorry your mom is going through this. Let me check this out and I'll get back to you probably tomorrow.
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - October 30, 2023, 03:16 PM
Nikkam, Sorry for the…
Nikkam,
Sorry for the delay.
Even though there's low incidence of lung inflammation with lorlatinib it does happen and can become a real life threatening situation. So discontinuing its use even if for a period of time is something your mother should really consider. If she isn't being seen by a lung cancer cancer specialist or better yet an ALK specialist it may be helpful to have a consultation with one. That person would be working in a large academic/research center and quite likely have options for video or phone consults.
Pleural effusion might be associated with the inflammation. Stopping the source could slow or help both situations.
I can't speak to the possibility of a clinical trial but it's likely that having inflammation would exclude one's participation.
If your mother is able, chemo is a likely next step and might help resolve current issues. A platinum doublet of carboplatin and pemetrexed (alimta) is considered most effective and with least side effects. If carboplatin (given for 4 cycles) is not feasible pemetrexed alone (it's given alone after 4 cycles) can be started before 4 cycles of doublet. Does that make sense?
I wish I could be more sure of the best course of action but it depends on the individual.
Best of luck to you and yours,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.