Cheryl T Posted October 25, 2021 Share Posted October 25, 2021 Was a moderate, on and off smoker for about 10 years, but that was over 40 years ago. At 70 I still played pickleball, enjoyed line dancing and played lawn bowls and was generally very fit for my age. After many visits to my GP over a 15 month period for an intermittent cough, I was diagnosed with NSCLC Adenocarcinoma in March 2021 - 34mm in upper right lobe. Unfortunately, by that time it was stage IV with metastasis to lymph nodes in lung and neck, tumours in left femur and L12 in spine. I had no other symptoms and my doctors were surprised I was not experiencing any pain, particularly from my femur and spine. While awaiting the biopsy results to come through my Onc referred me to an orthopaedic surgeon as the tumour in my femur had eaten well into the bone and the odds of a break within the next 6 months were very high. In May I had a 32 cm titanium nail inserted to shore up my femur. My biopsy results came through just days before my operation and they showed my cells have the EGFR marker. The day after I left hospital I started on Tagrisso 80mg....woohoo, one pill per day! I feel very blessed with such luck. No pain, very fast recovery from operation and very few side effects from Tagrisso. I look in the mirror and find it hard to believe I have lung cancer, I feel great. All very surreal. After 4 months of taking Tagrisso the primary tumour measured 18mm. It is not known how the other tumours are going, but my Onc sees no reason that they should not be shrinking, also. As I said, I feel very blessed. I do meditate daily, which I find leaves me feeling relaxed and very positive. I see my "well-being" cells as hungry little pac men eating up my cancer. Going to give this thing the hardest kick up the khyber I can! I am still line dancing and looking forward to playing bowls when the weather warms up here in Australia. I have not returned to pickleball, but only because I would often overreach and take a tumble and, now, knowing I have a fragile femur....but I want to play again. Maybe one day. My husband is very supportive with a positive attitude. But I am pleased I have found this forum where I can chat with and learn from other people undergoing a similar experience. Cheers and positive vibes to all. Link to comment Share on other sites More sharing options...
LouT Posted October 25, 2021 Share Posted October 25, 2021 Cheryl, Welcome to the club that nobody wants to be a member of. We're glad you found us. First of all, is sounds like you have mutations that some of our never smokers here have shown as well, so there is a good chance that your brief interlude with cigarettes may have had nothing to do with the cancer. Aside from that I'm also glad to hear that you are still active and that you are responding very well to Tagrisso. Sorry to hear about the 15cm support in your leg, but it was done for a good reason. Your attitude is so important in your recovery and you'll find some very strong people here to share your journey with as you go down this path. Another thing; you used the word "surreal" and that is so appropriate to the way all of us felt when diagnosed. We have a forum dedicated to EFGR and you can find it here. I believe we also have a Facebook page on this as well. I'm also sure that you'll be hearing from other folks with that trait very soon. In the meantime, please keep us updated and we look forward to traveling with you on your recovery journey. I look forward to a day where I read that you are back on the pickle ball court. Lou Link to comment Share on other sites More sharing options...
Judy M2 Posted October 25, 2021 Share Posted October 25, 2021 Hi Cheryl, welcome from this EGFR "expert"! I'm sorry it took you so long to be diagnosed. This isn't unusual for healthy people who are considered low risk. I was misdiagnosed for several months after I lost my voice. I've been on Tagrisso since March 2020 (after chemo and radiation). I was diagnosed Stage IIIB at age 66 two years ago and am NED today. I have a few minor Tag side effects that come and go. Most recent is new shortness of breath (a common Tag side effect), for which I will see my pulmonologist tomorrow in case I need a newer, long-lasting inhaler. You might be interested in the private LUNGevity Facebook group "Tagrisso (osimertinib) Patients & Caregivers Group", where we discuss everything related to Tag, its side effects and ongoing research for the next wonder drug. My husband is a pickleball instructor in our community group. My best advice to you is to never go backwards to make a shot. That only invites injury! I hope you can get back to your usual activities soon. It's good to keep active. Any questions, ask away! Link to comment Share on other sites More sharing options...
Cheryl T Posted October 26, 2021 Author Share Posted October 26, 2021 Thank you, Lou and Judy, lovely to meet you. I agree with you, Lou, re smoking, all indications are that there is no connection. I have been through a lot over the years including brain surgery for the removal of a benign tumour. It has never fazed me, just have to get on and deal with it. I sometimes think there is something lacking in me emotionally, but it is just the way I handle things. I have never wondered "why me", it's just another hurdle in life to jump over. Thanks for the heads up re the EGFR forum. My FB days are behind me so I won't be able to follow them there, unfortunately. The side effects from Tag are odd, Judy. Yes they seem to come and go. But I have to say the only noticeable ones I have are the occasional pimple (as a teen I remember saying that I will be the only 80 year old on the block with pimples 😄). I also suffer intervals of very dry skin, but that is easy to deal with with cream and oil. I thought side effects would occur in the first month or so, but it appears they can occur at any time. Best of luck with your breathing, I hope you get it sorted in short time. Yes, the first rule in pickleball is not to go backwards. Embarrassingly, I learned that early on, even after being told. Didn't know bruises could be so colourful. Most of the time I crash when I'm diving at the net for sneaky dinks. Will have to tone down my competitive streak if I want to stay in one piece. My next CT scan is at the end of November, which I look forward to. Sometime I expect a bone scan or PET to see how the other tumours are going. Because of my previous brain tumour I have an annual MRI, so my neuro-surgeon will be monitoring that. So, all's good! Link to comment Share on other sites More sharing options...
Judy M2 Posted October 26, 2021 Share Posted October 26, 2021 Thanks, Cheryl. Ah, the skin problems are a common side effect. The acne can be treated, so your dermatologist should be able to prescribe something. Use a good moisturizer and moisturizing body wash for dry skin, and if you get a red, itchy rash (eczema), use an ointment that carries the seal of the National Eczema Association, at least here in the U.S. Your dermatologist can also prescribe a topical steroid. Luckily my derm is very familiar with TKI side effects. You have a great attitude and it should serve you well. I've never had the "why me" thoughts either. I figure I could have it so much worse. Link to comment Share on other sites More sharing options...
BridgetO Posted October 26, 2021 Share Posted October 26, 2021 I'm not an EGFR expert, but I, too , want to welcome you here. It's great that your treament is working and that you feel well. Best wishes for this to continue! Keep posting. Link to comment Share on other sites More sharing options...
Cheryl T Posted October 26, 2021 Author Share Posted October 26, 2021 47 minutes ago, Judy M2 said: Thanks, Cheryl. Ah, the skin problems are a common side effect. The acne can be treated, so your dermatologist should be able to prescribe something. Use a good moisturizer and moisturizing body wash for dry skin, and if you get a red, itchy rash (eczema), use an ointment that carries the seal of the National Eczema Association, at least here in the U.S. Your dermatologist can also prescribe a topical steroid. Luckily my derm is very familiar with TKI side effects. You have a great attitude and it should serve you well. I've never had the "why me" thoughts either. I figure I could have it so much worse. I haven't seen a dermatologist, but my Onc has given me good advice. Managing the skin problems, so far. Fortunately, the pimples only come up now and then and not in big clusters. I just use a soapless cleanser, Cetaphil, and they clear in a couple of days. Judy, I so agree. I worked in disabilities and with clients with acquired brain injuries and always thought, but for the grace of God.... No, I count my blessings. Link to comment Share on other sites More sharing options...
Cheryl T Posted October 26, 2021 Author Share Posted October 26, 2021 25 minutes ago, BridgetO said: I'm not an EGFR expert, but I, too , want to welcome you here. It's great that your treament is working and that you feel well. Best wishes for this to continue! Keep posting. Thanks, Bridget, nice to meet you. I did lurk for a few weeks before joining and felt very comfortable coming here. I live in a regional town and though I couldn't ask for a more supportive husband and friends I still felt alone with my cancer. We only have one support group in town and that is for young women with breast cancer. I believe I am the first in town to even be prescribed Tagrisso. So, it is nice to be able to just chat with others who are likewise facing this challenge. Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 26, 2021 Share Posted October 26, 2021 Hi Cheryl, I see you’ve met some of the regulars, including your new EGFR sister Judy. I have a mutation too (of a different sort). Like you I spent months in and out of various doctors offices. The bottom line is 15-20 years ago it wasn’t included in their medical training. Here in the US the young medical professionals are learning- if they are paying attention. I have similar challenges with targeted therapy and found a combination of organic essential oils with lavender and tea tree oil work well too when you need a change up from the creams. I’m a big believer in acupuncture as well. I’m glad you found us. Welcome. Michelle Link to comment Share on other sites More sharing options...
Cheryl T Posted October 27, 2021 Author Share Posted October 27, 2021 11 hours ago, Rower Michelle said: Hi Cheryl, I see you’ve met some of the regulars, including your new EGFR sister Judy. I have a mutation too (of a different sort). Like you I spent months in and out of various doctors offices. The bottom line is 15-20 years ago it wasn’t included in their medical training. Here in the US the young medical professionals are learning- if they are paying attention. I have similar challenges with targeted therapy and found a combination of organic essential oils with lavender and tea tree oil work well too when you need a change up from the creams. I’m a big believer in acupuncture as well. I’m glad you found us. Welcome. Michelle 11 hours ago, Rower Michelle said: Hi Cheryl, I see you’ve met some of the regulars, including your new EGFR sister Judy. I have a mutation too (of a different sort). Like you I spent months in and out of various doctors offices. The bottom line is 15-20 years ago it wasn’t included in their medical training. Here in the US the young medical professionals are learning- if they are paying attention. I have similar challenges with targeted therapy and found a combination of organic essential oils with lavender and tea tree oil work well too when you need a change up from the creams. I’m a big believer in acupuncture as well. I’m glad you found us. Welcome. Michelle Thank you and nice to meet you, Michelle. Oddly enough, a few weeks ago our local news on TV advised doctors in regional Victoria not to ignore people presenting with a cough that has gone on for 3 weeks or more. Apparently there has been a rise in lung cancer in regional Victoria, particularly in young people. The story centred around a young woman, I would say about 30, who had never smoked nor been around people who smoke, but who was diagnosed at stage 1. Makes you wonder what we maybe breathing in from nearby farms?? Thanks for the tip re organic essential oils, I am nearing the end of my cream and was thinking of trying something else. I also use Bio Oil, but something a bit more scented would not go astray. So happy I have found fellow travellers to chat with. Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 27, 2021 Share Posted October 27, 2021 We’ve got lots of tips and tricks- for those who can not tolerate essential oils, some people try CBD oil as an alternative. I guess the point is don’t give up because different things work with no rhyme or reason. One of the gals in my LC support group who also has EGFR grew up on a farm in south west Kansas. She wonders too about what type of exposure she had too. There are any number of theories that may have caused my ALK mutation, including a spontaneous DNA rearrangement resulting from viral overload. Either way the bottom line is no one really knows so it’s almost not worth our time speculating. The good news here is people are finally starting to get that a persistent cough should not be ignored. Really glad you found us! Link to comment Share on other sites More sharing options...
Cheryl T Posted October 27, 2021 Author Share Posted October 27, 2021 Agree with you about speculating. It is not going to change anything, just got to get on and play the hand you have been dealt. Link to comment Share on other sites More sharing options...
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