treatment plan

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

No news isn’t always good news

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Time for an update about my health in general. Many of you have reached out to ask how I’m doing, some of you have told me you’ve been wondering but haven’t wanted to ask. I’ve received so many messages that I haven’t respond to most of them. I’m very grateful for the care.

Unfortunately there isn’t any more news from the testing done while I was in hospital last month. I’m on oxygen due to shortness of breath, and we don’t know how to treat whatever is causing the shortness of breath. The hospital tests ruled out major things like cancer, heart issues, fluid build-up, blood clots, several infections. We ended up with an uncomfortable mystery.

Obviously breathing really matters, and not knowing why a person’s blood oxygen level dips so low is not good news. We would really like there to be better news to share with you, but right now, sadly, there isn’t.

So for now we will hold onto hope and stay the course with the current treatment while looking into other possible treatment options in case this may be caused by cancer growth (which it might be, though the scans do not clearly show this). There are no clinical trials that we know of that could be a good fit for someone in my situation right now. (If you are in Canada and looking for a clinical trial that might be a good fit for you, you can connect with the Clinical Trials Navigator who is there to help you! Canadian Cancer Clinical Trials Navigator: https://3ctn.ca/for-patients/clinical-trials-nav/ )

Since starting on chemotherapy in 2020, each scan has led us to believe that the cancer is either stable or smaller. We continue to believe that the current treatment is effectively slowing the cancer’s growth (even if not fully abolishing it), so it’s definitely better to continue than to stop. We will go ahead with chemotherapy number 23 tomorrow, do more testing (bloodwork to be done on Monday and sent to Canexia in Vancouver BC Canada), and hold onto hope.

(One of the ways I hold onto hope is to pray, another is to read the Bible, another is to listen to wise friends.)

Fellow lung cancer survivor Taylor and I plan to connect tomorrow morning. (We met in person last chemo and get chemo on the same three-week cycle at The Ottawa Hospital.) I’ll go in a little early to get to see him and give him a white ribbon www.thewhiteribbonproject.org . The White Ribbon Project connects people affected by lung cancer worldwide, and is helping to draw people into community locally also. The power of the white ribbon. How good is that!

You may have noticed I’ve been a little less visible on social media in recent weeks. Yesterday after the port insertion I missed out on uplifting and honouring amazing women for International Women’s Day #IWD2022.

Honouring and uplifting people is good to do every day. Since I didn’t yesterday, today I’m sending out a big general cheer for the women who do tremendous work in the cancer advocacy landscape (too many to name individually, so I’ll name some of the organizations where we may have worked as teammates together): CCTG, 3CTN, OICR, CCS, IASLC, ILCF, LCC, SU2C, LHF, CCSN, CAPO, IPOS, CADTH, TOH, CCMB, PMH, CIHR, LUNGevity, GO2, LuCE, ALK+, AACR, ASCO, … (+ numerous other advocates who have inspired outside of these organizations). What a list! If you are an advocate and there is a way I might help you connect with some amazing teammates in any of these organizations, please feel free to ask. Connecting and uplifting people is a passion. #team

Ottawa Clinical Trials Team (2017?)

In the pictures above are just a few of the amazing women (and some men) who have inspired many of us. (These are pictures I could quickly find and put on my blog tonight.) So many are not pictured above, and there are very many more to come!

#hope