Dexamethasone, a.k.a. decadron, is a steroid commonly used by many people for many health conditions including cancer. I’ve been taking it in various doses daily since my hospital stay in February, almost six months ago. Something very important about this drug is to not suddenly stop taking it. It is critical to taper down before stopping. My care team has been working to find the best dose for me, and in process I’ve learned a few things.
First, can you tell these two pills apart?
If you look closely enough, yes you can, but don’t they look very much alike? These are both the same drug, but one is 4 mg and the other is 0.5 mg. How easy would it be to make a significant, health-altering mistake?
Dexamethasone is a steroid that people frequently vary the dose of, so often have both 4mg and .5 mg pills in their home, and frequently need to cut the 4’s in half. One of the two main issues I’ve bumped up against is how similar they look. It is possible to tell them apart, but very challenging. If you’re taking 3mg, for example, you would cut a 4 in half and add two .5’s, but if you accidentally got that backwards, you would ingest 8.25 and that could really hurt a person. The second is that it is very difficult for the ordinary person to break one in half. These seem like simple fixes with a design change on the 4 mg pill.
I’m feeling a little more energized and today I reached out to a dear friend who has a good friend who is a pharmacist to ask for contacts and advice on how to proceed it I’m seeking to drive change here. I don’t know how much energy I have for this, but could perhaps send an email.
Also really want to give a shout out to my pharmacist at the Glebe Apothecary who cut a whole bunch of 4mg pills in half for me last time I had the prescription filled. I asked about the cost of the pill cutter, but chose not to buy it, and when my pills were delivered they came like this. Such a good gift! This makes taking 2.5 mg daily so much easier! Very grateful.
We have a carport and it’s a great place for visits most of the year. A dear friend from High School ordered a heater for us and had it delivered shortly after a chilly visit last Fall, and that has extended the carport visiting season. So grateful!
It’s very special to be able to meet with people in person, and this summer quite a few friends are coming to town and making time for carport visits. Yesterday a childhood friend (we used to play piano duets together) came from the Seattle area and her Mom (who still lives in the same home with the same phone number (which I and so many others still remember)) came to visit. Such a treat! It’s so good to see people in person, even from 6 feet apart outside. In my opinion, it’s better in person than at a distance. Better in reality than virtually, in my opinion.
Don’t get me wrong, virtually is good, and in some circumstances it can open doors and provide opportunities that would not otherwise be possible. This is one of the silver linings of COVID and don’t get me wrong, I am grateful. It’s so good to meet “face to face” virtually when it’s too challenging (for a potential variety of reasons) to really meet face to face. There are good reasons for both. There is a season for everything. So grateful for a variety of options.
This is one of the reasons I’m such a fan of and advocate for CRAFT, 3CTN’s framework to make clinical trials more accessible for Canadians living in remote and rural parts of our geographically huge country. So important!
Here’s a short video about CRAFT with some great quotes from a few people which was made over a year ago. CRAFT has now been rolled out and is serving people at several locations.
Zoom and other similar platforms have enabled many of us to speak at international conferences and other events the past couple of years. I’ve spoken at so many virtually, and we recognize the upside of not having to travel and spend time away. This has been a good gift which has also been a real difference maker for many of us.
Speaking personally, these visual platforms have also transformed much of my patient research advocacy in other ways. I used to have so many phone call meetings prior to COVID, and some of them with quite a large number of people. Initially I hadn’t met all the researchers in person and I did not always recognize all the voices. Sometimes some of the people did not introduce themselves when they started speaking and it could be challenging to figure out which person (from which place) was speaking. It’s so much easier with platforms that can show faces and even list their names. So much easier to get to know people and be better able to contextualize their comments. So much better for community building than a mere large group phone call. So grateful for this!
In recent months, many members of the lung cancer community and other friends have sent gift certificates for our family to order food in. It means so much to receive this support that comes with love and appreciation. One ordered pizza for us, several have brought food, and many friends including our church community has brought much food and sent food in various ways as well. It’s such a treat and very much appreciated. Twice people have sent fruit bouquets which are so delicious, and so many other yummy things have arrived at our door – too many to name, and received with tremendous appreciation whether sweet or savoury. Thank you!
I’m very grateful for local friends who have done things this week – again, too many to name – like offer to pick up a walker for me, or regularly walk our dog. The reality is that there are times when we need real physical, local support. So many people here in Ottawa have offered and/or given support when needed, for example, rides to appointments, picking up groceries etc. Where would we be without our local people?
As much as we appreciate the virtual reality, we recognize there are some things that obviously cannot be done from a distance. Even for those who are part of strong virtual support groups, it seems obvious that it’s important to make sure we are also cultivating relationships with people in our own geographic community. We never know when we might need local support.
Please let me say again that we are incredibly grateful for the reality of this local support as well as the support from a distance.
August 1 is World Lung Cancer Day. What is your cancer center doing to celebrate?
One of many advocacy highlights happened at the AACR Annual Meeting in Atlanta in 2019. I was at the Convention Center, working on a presentation about immunotherapy for the Scientist <–> Survivor Program, while hanging out with several people, including Rhonda Meckstroth and Chris Draft. Chris knows just about everyone, and was talking with many of the researchers who were passing by there. He introduced some people to us, especially if they would be good people to interview about immunotherapy. Chris is a great connector and loves to share his resources with others. The lung cancer community has benefited so much from him. He’s always available to us.
Suddenly Chris nudged me and pointed to a small crowd walking by. In the midst of this crowd was a man who looks kind of like your stereotypical scientist. He looked very familiar to me. He looked very much like Dr. Jim Allison, Nobel Prize Laureate for his work on immunotherapy. I felt very excited and very shy. I asked Chris if it was really him. Yes, it was. (Of course it was – he was there presenting.) I wondered if I should go talk with him. Yes, I should! I went running after his entourage and tried to get through the crowd. They weren’t letting me, but when Dr. Allison heard that I was a lung cancer survivor advocate, he told them it was ok to let me in. He warmly welcomed me into his circle and a big wave of gratitude washed over me for this man and his team who were history makers, who had changed so many people’s stories and extended so many lives. I was very excited to be able to tell him that he had made a huge difference for the lung cancer community, saving many lives including some of my friends. I thanked him on behalf of the lung cancer community, telling him we were very grateful for him and his team. Expressing gratitude matters
Please note: some of my previous posts have not been saved as expected, so keeping this blog updated has been challenging. Also, a fairly recent post published before it was intended, so many edits were not made. The main correction to make clear is that we are not stopping treatment, just taking treatment breaks.
I had a PET scan, and appointments with my family doctor, thoracic surgeon/respirologist (who may do a biopsy) and oncologist recently. Good news all around! (Which may not be 100% precisely accurately remembered / communicated here.)
First of all, you may already know this bit of background I’ve been on Lorlatinib (a targeted therapy / cancer-fighting pill) since 2018. In 2020 we noticed progression so we radiation on those pesky spots, but that didn’t work as well as we’d hoped it would. Our next plan (still in 2020) was to keep the Lorlatinib and add Pemetrexed (IV chemo). This continued for 24 cycles, but in February 2022 I was admitted to hospital with shortness of breath of unknown causes. In Spring 2022 the experts determined that I was doing very poorly, likely due to the Pemetrexed, and stopped IV chemo for a treatment break. I continued on the Lorlatinib, but after an appointment with my oncologist very recently, we have decided to take a brief treatment break to see how I do on no treatment for a little while. Please note: these are just treatment breaks.
My family doc has agreed to look into what may be causing the shortness of breath, since it’s not necessarily cancer, which is great news! My oncologist also is referring me to a specialist who may be able to help with this.
The thoracic surgeon / respirologist said the PET scan revealed there is a small spot which may be measurable disease that he can easily biopsy if needed for the clinical trial. He also said that shortness of breath is natural since my lungs have much smaller capacity because of the scarring from cancer, the treatments, pneumonias, etc. This could have been discouraging, however when I asked what I could do to maximize what I’ve got and live as well and as long as possible, his answer was inspiring! This expert said that exercise makes a difference. Exercise is helpful – even when suffering from shortness of breath and in need of oxygen – and will influence all aspects of health. It doesn’t have to be at the pace that we might think. He encourages, for example, walking at a slow pace where we can still have a conversation with a friend and breathe. It matters that we keep pushing ourselves, at a slow pace, and it will help us to live longer and better.
Survivorship can be challenging. We need to remember that we are stronger than we think we are and by pushing ourselves a little, at a slow pace, and asking our friends to support and encourage us, we can potentially live longer and better.
Very grateful for Andrea Redway, for coming with me to the thoracic surgeon and also taking notes! (Everyone needs support and an advocate.) Still grateful for the cake made and brought by the awesome Vanneste sisters back in 2017 for our outreach table for World Lung Day. What a great surprise and generous gift that was! August 1 is World Lung Cancer Day. What is your Cancer Centre doing to celebrate?
Also very grateful for the ALK group who hosted a zoom call recently with people from Nuvalent, the biotech company developing the drug that I’m hoping to gain access to, potentially through upcoming clinical trial later this year. (Very grateful for Nuvalent.) One of the things I love about this trial is that the team has worked very hard to make it as accessible as possible to as many people as possible. So, for example, you can have had multiple prior lines of treatment. You could be 107 years old. You could have ALK cancer, but not specifically ALK lung cancer – even rarer. You can even live in Ottawa Canada.
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.
There’s a fairly big appointment this week, so it seems appropriate to give a health update. I’m getting a PET scan (Positron Emisson Tomography) in the morning. I haven’t had one since just prior to diagnosis in 2013, though it’s common for our lung cancer sisters and brothers in the US to have them more regularly. I don’t remember much about my first PET Scan, except that it took place at the cancer centre and the technician was very kind. He greeted me with something like, “How goes the battle today?”, and I strongly remember bursting into tears because no matter how I may have felt about that kind of language, suddenly this cancer experience became very real and I felt that I was in a fight that seemed very big and serious. He gave lots of information back then, but much has been forgotten. One thing that stands out clearly was that I shouldn’t hug my kids afterwards because I would be radioactive, and that not hugging my kids was a very big, traumatic thing for me and my kids when I got home.
The PET scan should help give us information about where the cancer is or isn’t, to help decide future course of action. Areas which look like cancer light up in the scan because areas that are cancer eat up sugar more quickly than areas that aren’t cancer. They make the cancer light up on the screen by making some sugar in a person radioactive, if I remember properly, so that clearly distinguishes any potentially cancerous areas from normal ones.
The particular kind of cancer that has been attacking me and many friends is called ALK+, and there has been a lot of excitement for some time in the ALK+ community about a new weapon, a new drug being developed by Nuvalent against ALK+ cancer called NVL-655. (You can read more here or here if you’re interested.) They are in process of opening clinical trials, and there is hope that they will open clinical trials in Toronto and Ottawa (Canada, where I live), among other places. If Ottawa were to open one, it would probably be a phase two clinical trial which I wouldn’t qualify for since I’ve already had so many lines of treatment (but other people could potentially benefit greatly from it). There is the possibility that I might be able to be part of the phase one trial which might open possibly in Toronto (about 5 hours drive away) sometime in the months to come.
My oncologist and other experts who know me know that I very much would like to try this drug, and are taking action to make sure that we are doing everything we can to get access to this new drug, if possible, perhaps through clinical trial or perhaps through compassionate access.
The best people are on it, so we keep on holding onto hope.
Advocacy is about relationships. Who we know can mean the difference between life and death. I’ve gotten to know some amazing people who are advocating for me. We are very grateful.
Advocacy is also about urgency. Advocates need to fight for urgency.
I’m so glad to know powerful advocates!
Those of you who are praying types are powerful advocates, and we appreciate the very many of you who pray regularly for us. Thank you. Please pray for wisdom and for pathways to open up for me and many others. Please keep praying for healing and for God’s mercy. Thank you
I’m excited to share this recipe with you because this has been my favourite smoothie for many years. When swallowing was challenging in the winter of 2020-21, I was not even able to swallow this smoothie. I did some tests, then some exercises given by Emilie (pictured below), a lovely Speech-Language Pathologist. (Those who are interested can read more here: https://throughthevalley.ca/2021/01/20/health-and-advocacy-update/.) Swallowing improved and has been good ever since. For some time I’ve been able to eat just about everything. I still really enjoy this smoothie and want to share the recipe with you. Thankful!
We can go through times when it’s hard and we can start imagining that things will only get worse, but that’s not necessarily true. We can ask for help. Things can turn around. We can choose hope and hold onto hope!
Jill’s Hope Mango Smoothie Recipe
Approximately 1/4-1/3 cup of mango
3-4 celery stalks, chopped
1 Tablespoon peanut butter
1 scoop plain protein powder (unsweetened, unflavoured)
Milk to fill it to the max level
Blend it all together and enjoy!
Keep holding onto hope!
What is your cancer centre doing for World Lung Cancer Day August 1?