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Lung Cancer Checkin - Fall 2022

I know it is a few days short of the fall equinox but I couldn't resist any longer. I'm wondering how all the folks who have touched base here are doing. I know that many caregivers are following this forum so feel free to chip in. Stories don't necessarily have to be looking for pity or inspiration, I just want to know how you are doing.

Let me go first. I'm doing okay. I'm six months away from the milestone that they told me I had a 5% chance of reaching. I'm still on afatinib. And I'm still running 5K a three times a week. Headed for a date with a colonoscopy at the end of the week that I dodged three years ago after a very frank discussion about the terminal nature of my lung cancer. But since I seem to be doing okay it would not be good to be sideswiped by a different cancer. Strange thoughts.

Okay enough about me. How about the rest of you?

Angus

13 Replies
LoveMyLife
57 Posts

@WestCoastSailor

Thank you for inviting us to check in ‍Angus. At last check in my diagnosis was 3C. I have just recently progressed. There was a bit of a mental shift with this news. I went from being treated with 'curative intent' to subtle reminders of the terminal nature of my new status with each visit to the oncologist. Initially I was panicked thinking I had a nodule on the pericardium however it turned out to be near the pericardium so I no longer worry about my heart blowing up at any moment. (Yes, there are dangers in reading and interpreting one's own CT reports.) It seems hard to believe that I am ill when I feel well and look healthy but it is a fact. All of the women in my family live to be at least 88 years old and I always assumed I would be in that group but I have chosen to adjust my thinking. Now I am hoping to reach 80 :) I am ill but essentially not a lot has changed. The side effects of the afatinib I started using about a month ago were somewhat bothersome however those are easing up, so it is pretty easy to forget I have cancer much of the time or even most of the time. I am still working full time, walking an hour most days, taking fitness classes one or two times a week, organizing a high school class reunion, babysitting my two year old grand daughter as frequently as possible (we had the the first overnight recently), providing limited caretaking for my elderly mother, networking with cancer people/groups, enjoying my deck and garden, making travel plans, gathering with friends and family, and so on. I still haven't told many people that I have cancer. It seems to me to be that we are all dying day by day and in that sense I am not much different from my peers. At my age (68), friends, old classmates, co-workers, casual acquaintances, clients we are all marching in the same direction even if not at the same pace. So many of them have gone without a warning and without a chance to say goodbye or to properly organize their affairs so in a way I feel lucky and blessed. Strange eh?

Super glad to hear you are about to hit your milestone. Thank you for sharing that. It made me smile an extra time today.

BigPopi
75 Posts
Just got a call from oncologist office this a.m.CT scan indicates tumor is stable!!
Bear1
59 Posts

Like BigPopi, my tumour is also stable. 😀 Next CT scan will be in late Oct.

Bear1 (Connie)

Lianne63
13 Posts

@WestCoastSailor
Will know a little more tomorrow as I have my first appt with the radiation oncologist, however I don't get to see the medical oncologist until October 18th which is a bit disappointing.

Currently Stage 3A with only one of the 3 lymph nodes they biopsied showing cancer so that was a good thing. My mental health isn't great but today is my last day of work so I can finally stop stressing about that and concentrate on my treatment and recovery.

I'll let you know how everything goes tomorrow. We have purchased a motorhome to stay in while getting my radiation treatments as hotels are outrageously expensive, even with the medical discount and then we can go exploring in it once I have recovered :)

Kuching
436 Posts
@WestCoastSailor
Good timing, Angus, I just got the results of my latest CAT scan today. Still stable, over three years since stage 4 diagnosis. I, too, was meant to be dead by now! My oncologist says I can head south again this winter, which is a huge relief. I can almost hear the sound of the waves.... So glad to hear you are doing well too. Laissez les bon temps rouler!
BigPopi
75 Posts

@Lianne63best wishes to you

Cynthia Mac
4124 Posts
Hi, all, I’m just “driving by” to thank you all for your updates. Kuching‍ , we spent two weeks by the sea this summer, and it was lovely. I’m glad you’ll get to have some “ocean therapy.”
drassel
2 Posts

@Kuching
Thank you for sharing. I too have been diagnosed with Cat 4 lung cancer that had already metastasized to my head and cheek. But that was a little over a year ago and am on osimertinib. Lucky to be taking a pill daily from home however at first side effects were not very good but after my oncologist reduced the dosage by half, feeling much better. Had some radiation for the head and the lung and now my 3-month reviews have been stable. Just had surgery two weeks ago to remove a malignant nodule in my breast (apparently independent from the lung one) and now waiting for results and treatment plan for this newest addition to the list. I have a big support group, a husband and two devoted daughters who make me feel good and make my life easier. I am also retired but still walk one hour every day.

I appreciated your message that after a few years, you have reached the stage where you can now think of a beautiful time away close to the sea. Very reassuring for all of us. We are lucky to have access to excellent health care. Thank you for sharing

Ron 27
35 Posts

@WestCoastSailor glad you are sailing along. I finished taking opdivo last spring after 24 months. Just had my latest scans showing all stable. I'm also still around after my best before date.

Kuching
436 Posts
@drassel
Drassel, I am also on Osimertinib. I started out on Gefitinib three years ago, then got the chance to switch to Osimertinib after a few months. That’s the only treatment I’ve ever had, and I’m still living a normal life, hiking and kayaking, with stage 4 lung cancer. As you say, we are lucky to just be taking a pill a day. In case you didn’t know, there’s a Facebook page for people on Tagrisso/Osimertinib, it can be very useful for treating side effects etc. Here’s hoping that little pill keeps working for both of us!
MommyT
142 Posts

@WestCoastSailor

I was told at my last appointment (after prodding the oncologist) that my status is now “in remission” until it's not! I'll take it, for sure.

I was able to travel to visit my daughter and two grandsons in Salt Lake City this summer, and my daughter and grandson in Burnaby. It was so great to see them. However, I did end up testing positive for Covid after the Burnaby trip, but it was pretty minor - not to say that I wasn't scared to death about it. I had something similar to a cold for one day, a fever of 99.9 (a little high for me, as I'm usually about 97.2 or 97.3) but that was all. I can't say I had any more fatigue than I usually do, so I am truly blessed!

My next scan is December - I've been moved to 6 months. It's sometimes scary to wait that long, as the 3 months seemed like a bit of a security blanket. I didn't have any symptoms when I was first diagnosed with lung cancer.

I've been making quilts and cards for family and friends, walking, and I've started on the Ace exercise program again. I thought that I would be focused enough to try to follow on UTube, but I didn't so this is better - makes me more accountable!

I have had a few close friends who were diagnosed with lung cancer - one has passed away and the other is having problems trying to beat it. I actually feel pretty blessed to have managed as well as I did. However, I do feel some guilt that I am doing so well, and my friends not so much. Maybe another discussion?

Nicky01
309 Posts

@WestCoastSailor Got result of scan last week….still N.E.D 😊

Susan57*
20 Posts

@Nicky01 My last CT
showed progression. I had radiation and all is good for now.

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