I apologize for not updating sooner. Hopefully you think no news is good news, or know you can contact me anytime. I last went to Dana-Farber in September and hoped to have some follow-up info before posting. When at Dana-Farber my oncologist said my scans and MRI looked good. So, good news once again. For that we are very grateful, always.
With one of the oncologists we talked about side effects and symptoms that seem to be worsening: neuropathy, shortness of breath (since having bronchitis last spring), and increasing weight gain (contributing to shortness of breath?). Because I am an “anomaly” (as they say, because of my longevity on this drug, most have progression and change treatment, several friends have died), the oncologist said they don’t really have a sense of whether at a certain point the side effects increase, worsening again as they did at first. One thing to try is a reduction in the dosage. NO! I am not going to rock the boat. My Lady Lorlatinib has served me well, keeping the cancer contained much longer than anyone (professionals that is) thought possible. So, what other ideas might there be, especially about the breathlessness? Well, she really didn’t think it should be caused by my lung, even with the fibrosis and my left lung partially collapsed. So, she suggested asking my PCP to do a cardiologist referral. The neuropathy I continue to just deal with it. The weight gain? I just don’t know. The best part of the trip (which was actually a very unusual and crazy schedule, followed by heavy rain in the dark coming home) was that Dan was back by my side, and strong and well enough for chauffeuring and “racing” all over Boston for appointments. He’s made a remarkable recovery from his October 2025 heart attack.
But then, the next day the oncologist called again. They had received an official report on my chest CT scan. On it was noted that a pesky lymph node they’ve been watching had increased, and attention on follow-up is recommended. So, instead of staying with the 6 month appointments, I need to go back in three. Hopefully it’s nothing, something that I’d never know about if not having scans! (Kind of like Trump saying if we didn’t test, we wouldn’t have so many COVID cases back when COVID was raging…)
So, if you’re still hanging in there, here’s the heart chapter. I had an echocardiogram, and then a cardiologist appointment. I have a leaky valve (something to be watched) and slightly high right side pressure, as described by the cardiologist. Neither of these should cause the breathlessness, which is very bothersome. (I have to sit for a minute after just going to the barn, going up the stairs,…) The cardiologist ordered a home sleep study (done) and a stress test with an echocardiogram (insurance is not cooperating yet). So, stay tuned!
Oh, and to add insult to injury (whatever that means), I’m putting the nasty cancer fighting cream on pretty much my whole nose and some other spots. I was told to wait until after summer, and so… Better safe than sorry, but it is pretty ugly right now.
Our summer started with two graduations and then attending our granddaughter’s wedding (which was absolutely beautiful), and then was filled with gardening, lobstering and boating in our little outboard, and enjoying the busyness that is Dan’s retirement. So much joy, especially knowing how different things could be for us. Every day we appreciate what we CAN do. After a great summer we moved back into our home in time for hunting season. Ruby Jean (now 11 year old dachshund) and I are doing the goat chores, keeping the wood stove filled, preparing meals for and visiting Dan’s dad (who is doing very well at almost 93), and crafting while Dan is hunting on the mountainside.
My belief that we should always have hope was evident on November 3 (that’s all I’ll say about that). Trying to stay filled with hope has served me well, kept me strong, and carried me forward. That, the love of family and friends, and continuing to find joy in the everyday every day.
This is Lung Cancer Awareness month. Risk factors? Do you have lungs? Yup, that’s it. Lungs. If you would like to learn more about and support funding for ROS1 cancer research it will be much appreciated (by those living with this cancer and those in the future whose lives will be saved), here’s a link: https://ros1ders-inc.networkforgood.com/projects/111398-fund-ros1-cancer-research?fbclid=IwY2xjawVf_RVleHRuA2FlbQIxMABwZG9mBWJyaWQRMW1SZTd4VTRjM2lwdDBMdTJzcnRjBmFwcF9pZBAyMjIwMzkxNzg4MjAwODkyAAEfjba92trF4ChaWiAUscvMon2da38tmzf0wK_JZ951rNQBBJiNGkOwNepENQY_aem_wWx8dy_02hYuHgiJDa0xUQ
Photo by Dan , Our side of the Mountain
