A bit of background for those interested in a summary of treatment lines, in two parts. With a huge load of hope!
First since 2018:
I’ve been on Lorlatinib (a targeted therapy / cancer-fighting pill) since 2018. In 2020 we noticed progression so did radiation on those pesky spots, but did not get hoped for results. Our next plan (still in 2020) was to keep the Lorlatinib and add Pemetrexed / Alimta (IV chemo, 3-week cycles). This ultimately continued 24 cycles, till March 31 2022.
In February 2022 I was admitted to hospital with gradually worsening shortness of breath of unknown causes which had become very serious. I started on constant oxygen and have continued gradually increasing the flow. Many tests were done, but nothing jumped out as a likely cause. Steroids, puffers, a transfusion and a couple of other drugs were added to my list, but no major improvement.
In Spring 2022 I continued to decline and was doing very poorly. The experts wondered if it was due to the Pemetrexed, and decided to stop the IV chemo. I continued on the Lorlatinib, and every scan since has shown the cancer remains stable or shrinks a little. I’m still on oxygen, still not much better, but a little later today we’re going to talk about whether we should consider pausing Lorlatinib to see if that helps with breathing.
Always holding onto hope!
Now since 2013 Diagnosis:
December 2013 – April 2014 IV chemo, still coughing (4 months), pneumonia several times
July 2014 – May 2015 Crizotinib (11 mos)
May 2015 Ceritinib start. Scans clear fall 2015 (20 mos)
Jan. 2017 Alectinib feel better than had since Dx (20 mos)
September 2018 started Lorlatinib feel fantastic!
October 2020 radiation, 5 days – then back on Lorlatinib
November 2020, started Alimta (Pemetrexed) 3week cycle. Pneumonia after first cycle.
March 24/21, still going strong. Feeling better on Pemetrexed and getting stronger. Praying for new treatment options.
April 6/21, very tired this cycle, but on evening of 12th starting to feel energy returning. Praying for new treatment options.
Feb 2022 hospital for shortness of breath
April 2022 still short of breath and uncertain why Still praying for new treatment options.
NVL-655 May be an option
You have been through so much Jill – my heard breaks for you.
Know that there are so many who are about you and hold you in prayer.
I just watched your interview with Dr. Bernard on YouTube. I’m praying for you and holding you in my thoughts. 💖 You have done so much to educate and advocate.
Jill, thank you so much for taking the time to keep us informed! We are thinking of you every day and “hopefully” strengthening your hope by adding ours. Prayers for you every day.