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
Keep holding onto hope!
Speaking of holding onto hope… Praying the PET scan stirs up hope for you, and shows off some good.
Praying for strength during the PET scan and hope for the future treatment. Thank you for your inspirational story. love from Elaine
Prayers continue for you Jill……especially today for the PET scan…..xo
On a personal note…..my brother Danny (age 64 in NB) has recently been diagnosed with lung cancer. He has had two massive radiation doses which has stopped the bleeding and will start chemo on July 20th.
We hold onto hope for all cancer patients…… 😊
Jill, I found your blog through the ALK+ Facebook page. My husband has ALK+ cancer. Thank you for sharing your journey. Just wanted you to know that have a friend in Missouri, USA who is calling your name in prayer before our Heavenly Father.
Holding onto hope for you and with you!
Hi Jill, I’ll be rooting for you and hoping you get the PET scan and the clinical trial. I live in TO. Keep me posted. I’m happy to help you and can give you a place to stay.
Hoping that the PET scan revealed useful information which can be used to determine a good action plan….praying.
Im wishing you good luck and I will pray for good news. I dont know wjo to reach out. I dont know if someone could help me find who I need to contact in order to get my pleuroscopy. The ER doctor told me I had lung cancer, but they cant prove it. I had a collapse lung and pleural effusion. They took three bottle of liquid from my lung but it did not revealed anything. Waiting and waiting for the pleuroscopy!!! My respirologist has sent the request 2 weeks ago. Im really concerned and dont know what to do. Thank you