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I'm still in remission after 5 years!
Lung Cancer | Last Active: 1 day ago | Replies (52)Comment receiving replies
@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.
Replies to "@nadine78 cancer and cancer treatment are difficult. being grateful to be alive doesn't negate the losses...."
@mamajite I'm so sorry you were born with that mutation. I live in Montreal, Quebec (Canada) and I wish they screened for lung cancer earlier. I had no idea that lung cancer is the leading cause of cancer death in Canada and the USA and it's affecting younger women more and more!
I hope you can get the surgery, get everything removed and live cancer-free and drug side effect free (hopefully)! I do have an oncologist dermatologist - but he's super unempathetic and says stuff like "well, acneiform and itchy scalp is a small price to pay." I feel like if there were a light at the end of the tunnel, I'd be like - ok, I got this. But for life? That still boggles my mind and I just can't grasp how I'm going to manage this... I'm 48 years old. Nobody understands me - I don't know ANYONE with terminal cancer in real life.
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@mamajite That's a tough spot to be in but I'm glad you've found a surgeon in Boston who's willing to help.
I agree that most lay people think of the 4-6 cycles of chemo model for cancer treatment. Sadly, I've even encountered that same attitude in other cancer support groups, which is why I'm so grateful to have found this community.
I'm glad you have a doctor able to help mitigate the side effects of the osimertinib. The triage nurse at my cancer center has recommended over the counter medications like Cortisone 10 to help mitigate itchy skin--one side effect of the Romvimza, which also gives me the puffy eyes. To be honest, I haven't pursued trying to reduce the swelling (it isn't uncomfortable--just ugly) because I have so many other side effects to cope with. Also, I live about 100 miles from the nearest moderately large city (Santa Fe). All but one of my doctors are there, making every medical appointment an exhausting trip that wears me out for several days.
You and I are alike regarding the to do list. I try--but don't always succeed--in completing my chores.