CLM Posted July 16, 2020 Share Posted July 16, 2020 Hi All, I will be starting tagrisso on Saturday or Sunday for stage 4 adenocarcinoma. Excited to be getting started but nervous, too. If you have any tips for side effects or positive news, I would love to hear it! Link to comment Share on other sites More sharing options...
Jennedy Posted July 18, 2020 Share Posted July 18, 2020 CLM, I start Tagrisso on 7/27 also stage IV adenocarcinoma. I feel the same way. I want to really start the fight but nervous about dealing with side effects. Link to comment Share on other sites More sharing options...
CLM Posted July 19, 2020 Author Share Posted July 19, 2020 Hi, Jennedy, I’m on day 2 of Tagrisso. I swear I can already feel a difference. It seems crazy to me that it would be working that quickly, but I’ll take it! I’m still coughing but it feels lighter and breathing feels easier. I randomly feel a twinge of mild pain but less pain than I previously felt. It’s truly incredible. I keep telling my cells, “this is it, fight off this cancer beast.” 😃 Please touch base when you start! I can’t wait to hear about your experience. ❤️ Christy Link to comment Share on other sites More sharing options...
Jennedy Posted July 22, 2020 Share Posted July 22, 2020 @CLM That is great news! What time of day are you taking it? We are heading for a lake trip with 6 other couples the Friday after I start. Worried if the side effects will ruin the trip. I'm already going to tell them, if you have to share a room with me, I cough a lot. During radiation I pictured Superman with his xray vision zapping those tumors. I'll keep in touch. Jenny Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 22, 2020 Share Posted July 22, 2020 Christy, I’m taking a different inhibitor for ALK + but wanted to let you know I had a similar experience after one dose my months long cough stopped and after two days I felt so much better. It’s not your imagination. Have a great trip Jenny! Be sure to bring any information about Tagrisso with you while you’re away. Although the risk of side effects is pretty low, best to be prepared. I ran a fever about a week into my meds and landed in the ED. The attending had never heard of the drug and I had to tell her what labs to run. The hospital staff was really grateful that I had the drug fact sheet. Carry on ladies! Link to comment Share on other sites More sharing options...
CLM Posted July 26, 2020 Author Share Posted July 26, 2020 Hi! @Jennedy @Rower Michelle I’ve had a few side effects this first week. Weird red mark on my face, mouth sores, and an upset stomach. I called the dr and they were really reassuring. Cortizone for my face and baking soda, sea salt, water to rinse my mouth. The dr also ran labs to make sure my blood was good—white blood cell count a little high. But, I feel fine, a little tired sometimes but mostly better than I’ve felt in months! I hope you have a wonderful trip, Jennedy! ❤️Christy Link to comment Share on other sites More sharing options...
CLM Posted July 26, 2020 Author Share Posted July 26, 2020 @Jennedy I forgot to mention that I take mine in the morning. I wanted to see what side effects I had. It seems to be working fine for me in the am! Link to comment Share on other sites More sharing options...
Jennedy Posted July 27, 2020 Share Posted July 27, 2020 @CLM, Thanks for the update. I decided on evening for mine. I start tomorrow. Jenny Link to comment Share on other sites More sharing options...
CLM Posted July 27, 2020 Author Share Posted July 27, 2020 @Jennedy Yay! Let me know how it goes! Link to comment Share on other sites More sharing options...
Jennedy Posted July 31, 2020 Share Posted July 31, 2020 @CLM so far so good. Well, the diarrhea hit today. I've noticed some flushing. Essentially hot flashes, but they haven't been bad. I guess its Immodium before the 4 1/2 hr drive to TN tomorrow. Link to comment Share on other sites More sharing options...
CLM Posted August 1, 2020 Author Share Posted August 1, 2020 @Jennedy Yes, that’s a fun side effect. I made rice pudding, and I have that with a banana for breakfast every day. It has really helped. I also try to have rice with dinner sometimes. I’m starting to get sensitive finger tips now. It seems like there’s a new side effect every few days—some abate some don’t. Have a wonderful trip! ❤️Christy Link to comment Share on other sites More sharing options...
Jennedy Posted August 4, 2020 Share Posted August 4, 2020 @CLM I am officially one week in. I started with dull headaches over the weekend. I wonder what the new one will be later this week..... But my cough is almost gone! Jenny Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 4, 2020 Share Posted August 4, 2020 Hooray for almost gone cough! Link to comment Share on other sites More sharing options...
CLM Posted August 4, 2020 Author Share Posted August 4, 2020 @Jennedy Hooray for No cough! I hope your headaches are manageable and abate quickly! I was just thinking that I can’t believe I’m on my third week! I’ve been walking a mile every day, up and down hills. My husband noticed today that I’m not breathing very hard walking up hill while talking. Woo hoo! So now I’m going to work on talking going up the biggest hills in my neighborhood. Go tagrisso go! Or maybe I’ll chant that! Lol! I hope you’re enjoying TN! ❤️Christy Link to comment Share on other sites More sharing options...
CLM Posted August 4, 2020 Author Share Posted August 4, 2020 On 7/21/2020 at 11:00 PM, Rower Michelle said: Christy, I’m taking a different inhibitor for ALK + but wanted to let you know I had a similar experience after one dose my months long cough stopped and after two days I felt so much better. It’s not your imagination. Have a great trip Jenny! Be sure to bring any information about Tagrisso with you while you’re away. Although the risk of side effects is pretty low, best to be prepared. I ran a fever about a week into my meds and landed in the ED. The attending had never heard of the drug and I had to tell her what labs to run. The hospital staff was really grateful that I had the drug fact sheet. Carry on ladies! @Rower Michelle Hi! I wanted to thank you for the book recommendation of Something More Than Hope. I think I’ve written down or ordered at least three more books the author talks about. I’m really liking Dr Weil’s breathing exercises in Spontaneous Healing that she recommended. Thanks again! If you have any other recommendations, would you mind sharing? ❤️Christy Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 4, 2020 Share Posted August 4, 2020 Sure thing! My other favorite is Anti Cancer Living by Lorenzo Cohen at MD Anderson. That’s where I learned about Diana Lindsay. Greg Anderson’s Cancer 50 things to do is also an excellent resource. I would not recommend How to Starve Cancer by Jane McClelland. Personally I found it far too technical to follow and the DIY Cancer strategy is risky. I do Dr Weill’s 4-7-8 breathing exercises twice a day and every once in a while “fire breathing”. Check it out on YouTube. I also see an Integrative Doctor that completed Dr Weill’s fellowship. She’s been very helpful getting my supplements and diets organized. Sounds like your making great progress!!! I’m thrilled for you!!! Michelle Link to comment Share on other sites More sharing options...
CLM Posted August 4, 2020 Author Share Posted August 4, 2020 Thank you so much! I’m seeing a nutritionist next week so asking about Dr Weil’s program is a great question! I can’t wait to check out these books. Thanks again! ❤️Christy Link to comment Share on other sites More sharing options...
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