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I'm still in remission after 5 years!
I want to share some good news with my fellow cancer survivors. After five years of living from week to week and CT scan to CT scan, at my recent appointment my oncologist told me that my next CT scan would be in six months instead of three to four months. It’s hard to express what this means to me.
Five years ago, I woke from a nightmare ICU delirium to be told I had Stage 4 lung cancer and that without treatment they gave me 3 to 4 months to live. I was fortunate to have an outstanding oncologist who prescribed a targeted new chemo that had just been approved by the FDA. The first 6 months were horrible. I was struggling with the lingering delirium, with a new cancer diet complicated by kidney issues and the life altering side effects of the chemo (entrectenib) which for me turned out to be weakness, fatigue, diarrhea, mood swings. I still have all of that, plus a new tumor that showed up on last June’s CT scan and turned my summer into an exhausting whirlwind of 200-mile round trips for biopsies, doctor visits, blood draws and ultimately, a second chemo on top of the first one.
The lung cancer is still in remission, the tumor under control and suddenly, amazingly, I have 6 months of my life without CTs and blood draws. 6 months to enjoy summer, to plant and watch the seedlings I started indoors flower, to play with my dogs, relax with my devoted husband. I still have a hard time believing it!
Thank you for listening.
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@lycisca Damn, I'm so sorry to hear that you have 2 different types of cancers. Geezus, you must've been so shocked after everything you went through with the lung cancer.
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1 Reaction@mamajite Ah man....I was hoping as the years (if I get there) went on, the targeted therapy meds would be easier to deal with. Sevabertinib is giving me major acneiform, hair thinning, diarrhea and more.... it's like I'm grateful to breathe better and be alive, but at the same time, I'm not exactly excited about social events...
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1 Reaction@nadine78 right? they use a lot of words to make them seem innocuous, but my experience sounds like yours. I was taking a daily imodium which helped control the diarrhea, so that I wasn't afraid to leave the house. but I think my quality of life took a major hit when my face rash was pretty bad and I lost most of my hair. there's a really good essay a patient from EGFR Resisters wrote on this topic. "Manageable toxicity is not a label - it is an oxymoron"
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1 Reaction@nadine78 It was a shock, while the ros 1 lung cancer is still under control, the giant cell tumor in my shoulder needs watching. I have a CT scan on it coming up.
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2 Reactions@mamajite It seems to me that the people who define "manageable toxicity" are not those suffering the side effects. Like you, if I want to leave the house for any length of time, I load up on imodium. And now I have side effects from the romvimza for the tumor, as well. Swollen, puffy eyes and more fatigue--like I didn't already have that from the entrectinib. I only go out when I have to and hope the puffiness isn't too conspicuous!
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2 Reactions@mamajite Wow, this is so true. Sorry if you've answered this question already - but I'm guessing you are still on a TKI because you need to be for life, right? The thing that gets me so emotional about this type of cancer is not having a light at the end of the tunnel.... people will say things to me like "well, when your treatment is over..." It's never over. This is my life, I can't live without meds. (My lung cancer is HER2, exon 20 and my drug is sevabertinib). So you lost your hair and it never grew back? I went from feeling amazing for 48 years, never even getting a headache.... now I'm this person with stage 4 lung cancer dealing with all kinds of side effects. I know I "should" be grateful that I can breathe better and my tumors are shrinking - but....
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1 Reaction@nadine78 cancer and cancer treatment are difficult. being grateful to be alive doesn't negate the losses. 🫂 my situation is I was born with the T790M EGFR mutation, which makes it very easy to develop lung cancer (out of the small number of us that have been studied, more than half ended up with lung cancer.) it's similar to having the BRCA mutation and genetic risk for breast cancer. the 2 tumor boards in Seattle (where I live) said I had too many nodules to be a surgical candidate and their plan was osimertinib indefinitely. that became increasingly difficult - so I sought out a specialist oncologist at Dana Farber in Boston who is willing to try to help me surgically. so now I'm off medication and waiting for my nodules to be large enough for surgery. it's a strange reprieve, like being in the eye of a hurricane.
I empathize with how difficult it is to come to terms with a new normal that you didn't choose. my hair dresser kept asking me when I would finish my treatment - which was depressing. I think most lay people have the 4-6 cycles of chemo model in mind when they try to offer support and it can feel discouraging when they don't get it. I'm so thankful for this community where I feel understood.
I have a dermatologist oncologist that has been trying to help me mitigate the side effects. do you have someone like that to help? I've been off of osimertinib since June and my hair and nails are slowly growing back. she has me on oral minoxidil to help with my hair. I also saw a functional medicine physician's assistant - and she had helpful suggestions about diet, exercise and supplements.
@lycisca one hundred percent agree. does anything help alleviate the eye issues for you? that sounds really uncomfy. I certainly relate to you about fatigue. I make a to do list with the most essential things at the top - knowing I can't always complete the list.