Shortness of breath

Brief Summary of Treatment in Two Parts

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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!

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October 2020 radiation, 5 days – then back on Lorlatinib

Pneumonia

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

#hope

Quick update

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I’m at cancer centre getting chemo. I needed help getting in since my shortness of breath got significantly worse overnight. Thankful for the new lovely friend who drove me, the porter, the receptionists at the COVID questions table and at chemo, and my good nurse Jessica who went above and beyond. She rolled me in to spend time with (and give a The White Ribbon Project Ribbon to) fellow lung cancer survivor undergoing treatment here at The Ottawa Hospital Cancer Centre, Taylor Westerman, and even took the following picture:

Jessica offered to help after seeing us take this one:

Here she is flushing my brand new port, inserted two days ago. Right now chemotherapy is flowing through it, into my body, fighting and destroying cancer cells! So excited and grateful to be using the new port! I know I’m new to having a port, but so far so good. Not painful. Thank you port insertion team. Thank you Jessica!

And thank you to the lovely young woman who brought ice chips!

In case you missed it, my shortness of breath got much worse overnight. I’m concerned and have talked to the nurses and asked for additional symptom control and supportive care. We continue to explore treatment options and hold onto hope.

Hope matters. Research matters. Supportive care matters. Keep holding onto hope!

Shortness of Breath

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This is a good time to let you know that I’ve been experiencing some shortness of breath. It has suddenly gotten much worse, and yesterday a phone call to the nurse updated the team with that news. She thought we should try to move the date of my CT scan up, and took steps to make that happen. I got a call on Thursday afternoon with a reschedule for late Friday evening instead of next Friday. Very thankful for a good care team and the opening at the hospital.

When my friend dropped me at the main entrance to the General campus of The Ottawa Hospital, I thought I would be able to walk (slowly) to the CT scan module, but it turned out that I couldn’t even make it to the COVID screening station. I sat in a wheelchair that was “parked” nearby and texted my friend who came straight away and wheeled me to my CT scan, then to Emergency. A kind nurse there (who had lost both parents to lung cancer) hooked me up to oxygen, and my blood ox is now at 100%. I’m feeling so much better!

Obviously we need to figure out what’s going on and come up with a plan, so we’ve run a few tests and are waiting for results.

I plan to update you again when we know more.

Just checked again and the monitor says my blood oxygen level is still 100% – what a great feeling. Very thankful for oxygen.