mam12198 Posted February 27, 2020 Author Share Posted February 27, 2020 My Dr told me today but I forgot to ask. I will try and remember to ask as chemo brain is real! carbo/alimta/keytruda shrunk my tumor on the first treatment, then it stopped working. 5 treatments, last one alimta/keytruda only. Tumor is stable didn’t grow but is still showing that it’s active. Hopefully the new treatment does something as it’s used for BC also. Nice to meet you!!! Link to comment Share on other sites More sharing options...
Lin wilki Posted February 28, 2020 Share Posted February 28, 2020 Keep us posted. I know it’s hard to remember everything the docs tell us. After 6 months of immunotherapy trial PET scan showed progression. I was so freaked out! At least my onc wrote down my mutation and the targeted chemo I will eventually get. I had to go home and look it up. My mutation is pretty rare in lung cancer but they are now finding it more. So there’s the hope that there will be clinical trials down the road. Good luck with your new plan and please keep up posted Link to comment Share on other sites More sharing options...
mam12198 Posted February 29, 2020 Author Share Posted February 29, 2020 I am looking at the reports and I think it's the CK-7. Not sure but that and TTF-1 showed positive. Don't quote me. Link to comment Share on other sites More sharing options...
Lin wilki Posted February 29, 2020 Share Posted February 29, 2020 I would confirm with your oncologist. Then you might get more info on your particular mutation. Usually found in breast cancer is some form of HER 2 Link to comment Share on other sites More sharing options...
Lin wilki Posted April 14, 2020 Share Posted April 14, 2020 Follow up please! I have a HER2 amplification and so far nothing is stopping my cancer from growing. I did 4 rounds of Carboplatin and Alimta then 3 rounds of Alimta alone. A couple of tumors keep increasing in size Doc finally decided to try my targeted chemo which is Kadcyla. Approved for breast cancer but she may have to fight with Medicare to get approval for lung She also mentioned Docetaxel if this doesn’t work. What treatment are you on and how’s it going? Link to comment Share on other sites More sharing options...
mam12198 Posted April 14, 2020 Author Share Posted April 14, 2020 I keep forgetting to ask but I will. carboplatin/alimta/keytruda shrank my tumor a bit on the first treatment but then did nothing. I’m now on Docetaxel/Cyramza. Docetaxel is for lung and breast and Cyramza is a targeted chemo. Docetaxel is hard with s/e. I will learn next Friday the 24th if it’s doing anything as I’m getting a pet scan which I’m nervous about. take care!!! Link to comment Share on other sites More sharing options...
Lin wilki Posted April 14, 2020 Share Posted April 14, 2020 Docetaxel was mentioned by my doc. What’s s/e? It sounds like a harder chemo than the Carboplatin Alimta cocktail. How are you feeling on your current plan? Good luck with your PET scan. That does give you the most information. Please follow up after that I and everyone here at LUNGevity are here for you! Link to comment Share on other sites More sharing options...
mam12198 Posted April 14, 2020 Author Share Posted April 14, 2020 Docetaxel is hard I won’t lie. Each day is different, some lousy and some ok. More fatigue than carboplatin but this all me, you could be different and have minimal. S/e are for me, yeast infection, diarrhea, fatigue, dizziness, some nausea, weak. Pet scans are the best but I’m always nervous for any test now. Keep me posted on your situation. Link to comment Share on other sites More sharing options...
Lin wilki Posted April 14, 2020 Share Posted April 14, 2020 I will. Hoping to start my new targeted chemo -Kadcycla - by next week. That has easier side effects, but again, there's a chance that it doesn't work. I have had lots of failure = immunotherapy was a complete bust, lots of progression. Then chemo, which for my cancer stable, except one tumor kept getting slightly bigger. Now, from maintenance of just Alimta, more growth. So, can't say I am supremely confident in any treatment so far. The Docetaxel sounds hard - my oncologist is holding that hopefully for later. If I get the Kadcyla and it works, that would buy me some time I think in feeling better. Of course, I HATE scans, they always show something for me. I am hoping for you - a fabulous scan! Prayers and best wishes Link to comment Share on other sites More sharing options...
mam12198 Posted April 14, 2020 Author Share Posted April 14, 2020 I’m so sorry that you’re not having luck with treatments. My Drs are aggressive and I like that. If the Kadcyla is doing nothing I would tell them to get aggressive. You want success not letting it grow. Keep me posted and try to stay positive. I’m home now so I’m going to rest on the couch....lol not like I did anything today but sit in a recliner. Link to comment Share on other sites More sharing options...
Lin wilki Posted April 19, 2020 Share Posted April 19, 2020 So finally ct report uploaded in my online chart. I had to get Covid test (negative) because of ground glass opacities. Also some pleural effusion which is all new in 6 weeks. Wow! And more broken ribs from steroids probably. I’m getting more unfunctional as treatment continues. Will address osteoporosis when I can go to doctor. Appointment canceled last month This Covid thing has messed up so many things! So get echocardiogram Tuesday and new targeted therapy Wednesday. I’m ready to get some positive results. Good luck on your scan! Link to comment Share on other sites More sharing options...
mam12198 Posted April 23, 2020 Author Share Posted April 23, 2020 So sorry it’s taken me so long to get back to you. My chemo is strong and I haven’t felt good since I got my last treatment. My Petscan is tomorrow and I’m not looking forward to it. Did you start on targeted therapy? I’m on Cyramza. How is your heart test. Link to comment Share on other sites More sharing options...
Lin wilki Posted April 23, 2020 Share Posted April 23, 2020 Yes I started yesterday. Kadcyla. Praying that this works! Very different drug. For chemo pre infusion was anti nausea and steroids. For new drug- benedryl and Tylenol! I still have anti nausea med just in case. My echo was fine. She said pleural effusion so tiny she’s not worried. I’ll be thinking about you tomorrow. Good luck on your scan. If that chemo is so strong it has to be effective! Link to comment Share on other sites More sharing options...
mam12198 Posted April 23, 2020 Author Share Posted April 23, 2020 I’ve heard of that one. Praying it works for you!!!! Happy the Dr is ok with your heart. I get Benadryl, anti nausea, steroids as my premeds. Wish I could sleep with the IV Benadryl but I can’t. When do you start? Link to comment Share on other sites More sharing options...
Lin wilki Posted April 23, 2020 Share Posted April 23, 2020 First infusion was yesterday. 90 minutes, I tolerated it well -- they look for allergic reaction, chills, etc. I was ok. So next time 60 minute infusion, then I don't know how long after that. Another CT scan in 6 weeks to see if it's working. I can only hope and pray!!! Link to comment Share on other sites More sharing options...
mam12198 Posted April 23, 2020 Author Share Posted April 23, 2020 My treatments were a little quicker this time because no allergic reaction. I pray it works for you!!! Ok nap time is calling, what else is new! This has been treatment from hell!!! If tomorrow’s scan is good, then I’ll stop complaining. Link to comment Share on other sites More sharing options...
Lin wilki Posted April 27, 2020 Share Posted April 27, 2020 When do you get results? Also do you know if you have a HER2 mutation? Link to comment Share on other sites More sharing options...
mam12198 Posted April 27, 2020 Author Share Posted April 27, 2020 I’m a nervous wreck waiting. Haven’t heard yet. I will ask when I talk to my Dr about the mutation. How are you doing? Link to comment Share on other sites More sharing options...
Lin wilki Posted April 28, 2020 Share Posted April 28, 2020 Finished steroids that I took for 5 days cuz of ground glass opacities. So no nausea but it might be due to steroids. I definitely crashed last nite and still fatigued today Tomorrow I should be feeling better. Thinking of you and sending good vibes! Link to comment Share on other sites More sharing options...
mam12198 Posted April 29, 2020 Author Share Posted April 29, 2020 I pray you feel better today!!! I heard today, good news. My Dr said treatment is working. My treatment kills the cancer floating around my body which it did. Now it will attack my lung tumor. My mutation is CDK2NA. I know nothing about it just that it’s found in breast cancer they said. Chemo Tuesday and I’ll be down for almost 2 weeks but now I know it’s working, I will get strength again to handle it. Link to comment Share on other sites More sharing options...
Lin wilki Posted April 29, 2020 Share Posted April 29, 2020 So happy for you. You should sit back and relax! How many rounds do you have left? Giving you strength to get through it Link to comment Share on other sites More sharing options...
Lin wilki Posted April 29, 2020 Share Posted April 29, 2020 I never heard of that mutation. There are so many, but hopefully it helps to find the right treatment Sounds like you did! Link to comment Share on other sites More sharing options...
mam12198 Posted April 30, 2020 Author Share Posted April 30, 2020 I will relax when the lung tumor starts to shrink or show signs of being nonactive. I will continue my treatments and my Dr said they are working on a trial at my hospital using people with lung cancer that have the breast mutation. Hopefully that comes soon and I can try that trial if needed. How are you doing. Link to comment Share on other sites More sharing options...
Lin wilki Posted April 30, 2020 Share Posted April 30, 2020 I have some good days and bad days. Yesterday, I was very fatigued! Today, feeling better, I will get just one more 60 minute treatment of Kadcyla, then we visit our son and 6 kids in Arizona for a week. Not going to be able to do much there either - with the virus all around! But, Arizona has less cases, and of course, the airports are not busy, so my doctor gave the OK to go. It was planned originally for granddaughter's high school graduation. However, that and all school has been canceled. But, we decided to get out of Illinois and get into some sun and warm (hot) weather. Early June when we get back, I will probably have another scan to see if Kadcyla is working. I'm not going to think about it for now. Good luck after your treatment. Link to comment Share on other sites More sharing options...
Lin wilki Posted May 30, 2020 Share Posted May 30, 2020 So scans today- results this Tuesday. We just got back from visiting grandkids in Arizona. I felt I could breathe better there! But after a lot of walking so tired. Just a reminder I have lung cancer! Praying new treatment is working How are you feeling? Link to comment Share on other sites More sharing options...
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