At 58, my dad as a non-smoker was diagnosed with stage 3c, assumed 4, adenocarcinoma of the lung. It's spread to his local lymph nodes and also into his trachea and more than likely his adrenal glands. He found out he has a gene mutation, EFGR exon 19. So he went on Tagrisso and has had Amazing success over the last 22 months, and a free 22 months is nothing to balk at I know it's a big deal. But thursday we got the news that it looks like two new masses have sprouted up and the main one has grown slightly. First questions from the doctor were "have you stopped taking your medicine" so not promising and they're concerned it's stopped working. They're for some reason waiting until the end of March to do a new scan and then order a biopsy depending on what it shows which in itself is mildly infuriating cause it's like well if it stopped working lets nip this now while we can get the best bang for our effort!
I feel like I went through these same emotions two years ago when he was first diagnosed though, just a lot of spinning wheels and panicking and feeling like his oncologist was moving at a snails pace. I'm afraid of the google answers but I have to know from people knowledgeable about this...how bad does that sound? I mean the cancer has shrunk Substantially and he was given like 6 months to a year when they first found it as stage 4 before they knew it was a gene mutation. So I'm hoping there is more time than that left.
Are there new pills coming out anytime soon to replace tagrisso when it stops working? I remember his initial oncologist made it seem like we might just be able to leap frog from one pill to the next extending my dads life until he dies from something else, but the new one he has now seems to think we are a pain in the ass and it always feels like we are wasting his time with our questions. Google makes it seem like his next step is chemo, but I also don't want to get too deep into a google search because I'm sure at some point I'll find an article giving me worst case scenarios and I'm trying to avoid panic. Thank you for any and all info you guys are willing to share with me.
This is obviously a bit of a gut punch to us all, especially since about 2-3 months ago he got the news on one of his last scans that he was officially in partial remission. So we kind of thought the fear was going to be abated for at least a little while...
Reply #1 - February 6, 2023, 02:44 PM
Hi JGromo, Welcome to Grace…
Hi JGromo, Welcome to Grace. I'm so sorry your dad and by extension, you are going through this. If it helps, I know how you feel. My husband is going through a new workup after 10 years of no treatment/remission, or it's a new cancer or it's no cancer. The waiting is so so difficult. I can't say why your dad's onc is waiting, you would need to ask the onc. It might be because he wants to know if the progression is widespread which would mean the tagrisso has really stopped working. Sometimes just one or so tumors create resistance to a TKI like tagrisso while other tumors remain controlled by the TKI. It's known a oligoprogression and is treated with local treatment like radiation and tagrisso is continued as normal. Or maybe he has an infection or... Whatever it may be or not be you can't get an understanding until you give it time to show itself.
I'm going to ask one of our faculty to comment on the waiting period.
As for the new onc not answering questions. Not all good oncologists are good communicators. Maybe there is a way to get him to be more responsive. It's difficult for an onc to explain details to someone about this extremely complicated situation...where do you start. You can learn a lot from our content, ask us questions, get to understand what is going on with your dad so you can ask specific questions to his onc. Our faculty have talked about this and suggested it can help an otherwise good onc open up quite a bit. On the other hand, he may just be a jerk but trying to get him to open up is easier than changing oncologists.
This is a link to our EGFR-specific videos from the 2022 Targeted Therapies Patient Forum. This is our youtube channel's playlist that includes all the videos from the 2022 Targeted Therapies forum (note that the 2022 targeted therapies forum videos have the same icon pic). Don't miss the ones about caring for yourself...I need the refreshers as well.
I hope this is helpful,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply #2 - February 7, 2023, 06:21 PM
I agree that not all docs…
Operations Director, GRACE
I agree that not all docs are good communicators! Remember they are people just like us, filling a very important role. I echo Janine's comment to ask questions here -- our goal is to educate and communicate on a layperson's level, as much as we can. Use us as a sounding board so you are confident with your questions moving forward. Knowing what questions to ask is half of the battle.
Good luck, and welcome to GRACE
Denise
Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009. Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education.
Reply #3 - February 7, 2023, 07:02 PM
This is the response via…
While no one can give advice or recommend treatments on a forum our faculty can be invaluable when talking about current thought and practices.
This is the response via email from Dr. Fernando Diaz,
"These are my thoughts: I agree that effective communication from the physician to the patient and their loved ones are indispensable; providing sufficient time to have all your questions fully explained is important to ensure that the next steps in the patient's care are in alignment with the patient's stated values. It would not be unreasonable to request changing oncologists if there is a pattern of broken communication between the physician and the patient that is causing distress. Regarding the growth seen on recent imaging, it is difficult to give an accurate recommendation without knowing the details of the new lesions in the context of a formal evaluation. I will say that the size of the lesions/masses and the location are all valuable pieces of information that help craft the most appropriate treatment plan for oligoprogression. It's important to clarify that the belief is that there are cancer cells that are still being controlled by Tagrisso and only limited spots that have become resistant (i.e. the new lesions and the growing mass). There is not a better TKI, like Tagrisso, currently available. The next option would be chemotherapy or a clinical trial. Depending on the site and the size of the lesions, a combination of radiotherapy and/or surgery could potentially be used to treat these sites where resistance is occurring to maximize the use of Tagrisso for as long as possible. An appointment with a radiation oncologist and/or a thoracic surgical oncologist may be appropriate in this regard."
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply #4 - February 7, 2023, 07:49 PM
From Dr. West, He reminds us…
From Dr. West, He reminds us, "The principle is not to over-react to minimal change." and suggests this article and the ones on oligoprogression linked in the above post. "Note in this article that this principle applies not just to BAC (or the subtype of lung cancer formerly known as BAC) but for any indolent/generally controlled process." Remember you want each treatment to last a long a possible.
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply #5 - February 13, 2023, 01:40 PM
Thank you!
Thank you for all the recomendations and getting back to me! I really appreciate it!
Reply #6 - February 14, 2023, 09:28 AM
Hello JGromo and welcome to…
Hello JGromo and welcome to the GRACE forum. We encourage you to keep the conversation open with our staff as much as you'd like to as your father's treatment continues. We have a large video library as well as articles, etc. that Janine can help you to navigate which can help to educate you and your family about different options as well as the ability to get real-time information from our world-class faculty who are dedicated to educating patients and caregivers about their treatments. No question is too big or too small; we are simply here to help you and your family.
Executive Director of GRACE since 2017. Joined GRACE to ensure that all patients and caregivers are empowered to obtain equal access to education about treatment options.