Well, here it is, 3 years from my wife's diagnosis.
As with previous updates, I need to start by thanking everyone here for their dedication and compassion for all who pass through this site during their cancer journey. In the emotionally rocky path of dealing with cancer, it is indeed a blessing to have place where you can get clear and focused information from people who care so much about those affected. I remain deeply grateful to all of you.
3 years ago, as I first started to read up on Stage 4 NSCLC, I was afraid my wife might not even make it this long. Despite the persistent call that in many ways every cancer and every patient is unique, the statistics were still there, and so was the fear. Now we are in that odd place where everything seems stable and good for the moment, but the cancer is still lurking around the corner. Gemzar seems to be holding things at bay for the moment (next CT scan is next week, always apprehension w/each new CT, so keep your keyboard fingers crossed) and my wife is feeling really good (a bit of headaches and aches for a couple days after each treatment, but nothing like the Carbo). My wife has amazing strength and energy, and just completed being a co-chair for a huge fundraising Gala at our synagogue, and continues her 2x a week ESL tutoring for adults. We both continue being in a community chorus.
So, for those keeping score, we are basically at treatment line 5; 3 effective lines of treatment and 2 ineffective ones; no apparent new metastases for number of months. During these 3 years our son graduated college, our daughter got engaged and married, we've gone to Israel, the Galapagos and Quebec and taken a number of small trips to LA, Toronto and Denver. The time has also included my father's death 2 years ago, and an unfortunate falling out with a section of my family (almost exactly 1 year ago) - one of those where you have to graph who is speaking to who.
Your site remains a bright spot in a world of fog and fear.
Reply # - April 24, 2018, 06:42 AM
Hi scohn,
Hi scohn,
Thank you for the update and for sharing your experiences over the past three years. The happy events you and your wife have shared are what keep us striving to help GRACE members improve survival and quality of life. During my wife's illness, she saw the passing of her mom but also a trip to Europe with her father (a paratrooper in WWII) for a commemoration of the liberation of Holland, a gathering of a large group of her childhood friends, a visit to see her sister and niece on the East coast, and other short trips. And every day, we enjoyed each other's company and many beautiful sunsets. As you know, every moment is precious.
Since Janine and Denise and I have all been there for a loved one's fight with lung cancer, we have a good perspective on what patients and caregivers need. We are grateful to provide whatever help we can, and we appreciate your kind words.
Good results on the upcoming scan!
JimC
Forum moderator
Reply # - April 24, 2018, 09:26 AM
Mazel tov and congratulations
Mazel tov and congratulations on living life to its fullest in 'extra years' or more managing this dreadful disease. I'm amazed at the energy of your wife and wonder if you have any ideas to share about maintaining activity and energy levels through multiple treatments. Best of luck too.
Reply # - April 24, 2018, 11:41 AM
Dear Jim and onthemark,
Dear Jim and onthemark,
Thank you so much for your kind words.
onthemark, as to my wife's maintenance of energy and activity, I can mostly attribute that to her amazing spirit, focus, and resourcefulness. When she first found out about the diagnosis she looked at me and said "I plan on living for many years yet" - and I have learned that when she gets a great idea in her head you never stand in her way!
The Carboplatin hit pretty hard, plummeting the RBCs to almost (but not quite) the point of needing a transfusion, and the WBCs enough to need neulasta. But outside of the 2-3 worst days each treatment, she still pretty much did everything she normally does. The opdivo was probably most difficult - it had no effect and caused colitis. Nonetheless, she just took whatever medications she needed to, and we still traveled to Israel in the midst of the opdivo treatment. And 1.5 years later, when we went to the Galapagos, she still hiked faster than I did! (Did I mention how she is amazing).
We have been lucky (if you can call it that) in that at diagnosis it was near as early Stage 4 as one could get (based on the initial CT scan the pulmunologist thought it was Stage 1). A main lung tumor, a couple of lymph nodes, and two bone metastases. Just past calling it "oligometastatic".
But, the second effective treatment, the clinical trial drug, kept the cancer at bay for 1.5 years, and had virtually no effect on RBC or WBC, so her energy levels improved, at the expense of some neuropathy (still present but greatly reduced after she finished that drug). The Gemzar is working well, allowing the neuropathy to improve, but at the expense of phlebitis until she had a port put in (now no problem!). Basically she does whatever she needs to and then gets on with life. I am incredibly lucky to be her spouse.
And I had to take many deep breaths today. I teach cell biology, and today I talked about cell receptors (like EGFR) and how their mutation can cause cancer.
Reply # - April 24, 2018, 06:00 PM
Scohn,
Scohn,
HUGS all around. I've loved watching you and yours living life. I hate the fog and fear though, so so sorry.
Janine
Reply # - April 26, 2018, 02:03 PM
Thanks Janine!
Thanks Janine!
I really appreciate all the warm thoughts from everyone!
I'll keep everyone up on future activities - we're not sure yet exactly what's up with this summer. Possibly a road trip to Tuscon. More visits to Denver. Week with some other couples at a vacation home on Lake Michigan in Indiana some time in the next year (perhaps for some of those beautiful sunsets). You never know where life will lead you......