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I'm still in remission after 5 years!

Posted by lycisca @lycisca, Apr 1 11:36am

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.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

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nadine78 | @nadine78 | Sep 30 6:37pm
In reply to @mamajite "@nadine78 cancer and cancer treatment are difficult. being grateful to be alive doesn't negate the losses...." + (show)
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@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.

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@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 | @mamajite | Sep 30 9:41pm
In reply to @nadine78 "@mamajite I'm so sorry you were born with that mutation. I live in Montreal, Quebec (Canada)..." + (show)
Profile picture for nadine78 @nadine78

@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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@nadine78 thank goodness you found us! so sorry your oncologist dermatologist is lacking in bedside manner. I don't suppose you could switch to another one. 🫣 I was feeling the same way heading into year 3 on osimertinib. it should not be hard for doctors to acknowledge that it’s difficult and life changing to need these medications.

I'm a little older than you at 54, but I know what you mean about peers not being able to relate to a serious medical diagnosis. In case it might interest you, Dana Farber has a Young Lung Cancer Program - and they have their first ever (free) virtual forum coming up in November.
https://www.dana-farber.org/cancer-care/treatment/thoracic-lung-cancer/programs/young-lung/support-and-resources

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nadine78 | @nadine78 | Oct 2 4:05pm
In reply to @mamajite "@nadine78 thank goodness you found us! so sorry your oncologist dermatologist is lacking in bedside manner...." + (show)
Profile picture for mamajite @mamajite

@nadine78 thank goodness you found us! so sorry your oncologist dermatologist is lacking in bedside manner. I don't suppose you could switch to another one. 🫣 I was feeling the same way heading into year 3 on osimertinib. it should not be hard for doctors to acknowledge that it’s difficult and life changing to need these medications.

I'm a little older than you at 54, but I know what you mean about peers not being able to relate to a serious medical diagnosis. In case it might interest you, Dana Farber has a Young Lung Cancer Program - and they have their first ever (free) virtual forum coming up in November.
https://www.dana-farber.org/cancer-care/treatment/thoracic-lung-cancer/programs/young-lung/support-and-resources

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@mamajite My oncologist is sending me to a different dermatologist next week.... but I looked at his reviews online and seems I'm in for the same thing, sigh. I honestly think the best skin advice might come from "lung cancer influencers" online! lol Thank you for the link to that program, I'll check it out.

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mamajite | @mamajite | Oct 2 8:18pm
In reply to @nadine78 "@mamajite My oncologist is sending me to a different dermatologist next week.... but I looked at..." + (show)
Profile picture for nadine78 @nadine78

@mamajite My oncologist is sending me to a different dermatologist next week.... but I looked at his reviews online and seems I'm in for the same thing, sigh. I honestly think the best skin advice might come from "lung cancer influencers" online! lol Thank you for the link to that program, I'll check it out.

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@nadine78 you are most welcome! fingers crossed for an improved dermatology experience. and yes - the most helpful skin related advice I've received has come from other lung cancer patients (and a friend with Sjogrens). I found the thread below when I was first on meds and it was incredibly validating.
https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/tki-side-effect-busters-tarceva-gilotrif-tagriss-iressa/

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lycisca | @lycisca | Oct 3 12:33pm
In reply to @mamajite "@nadine78 you are most welcome! fingers crossed for an improved dermatology experience. and yes - the..." + (show)
Profile picture for mamajite @mamajite

@nadine78 you are most welcome! fingers crossed for an improved dermatology experience. and yes - the most helpful skin related advice I've received has come from other lung cancer patients (and a friend with Sjogrens). I found the thread below when I was first on meds and it was incredibly validating.
https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/tki-side-effect-busters-tarceva-gilotrif-tagriss-iressa/

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@mamajite Thank you for posting the link for dealing with side effects. I read through it and found it informative although my present targeted chemos don't have those side effects.
Even at my age (78) people can't cope with what "I'm stuck with this for the rest of my life." looks like.

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mamajite | @mamajite | Oct 3 2:26pm
In reply to @lycisca "@mamajite Thank you for posting the link for dealing with side effects. I read through it..." + (show)
Profile picture for lycisca @lycisca

@mamajite Thank you for posting the link for dealing with side effects. I read through it and found it informative although my present targeted chemos don't have those side effects.
Even at my age (78) people can't cope with what "I'm stuck with this for the rest of my life." looks like.

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@lycisca you are welcome. for me, that long listed validated all of the day to day life changing aspects of being on targeted therapy. it wasn't just me. it's tough to make treatment choices when all of the options aren't great. I think it's still worth a conversation with your oncologist about your treatment goals/options and the impacts on your quality of life. hugs!

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