KarenR Posted June 5, 2021 Share Posted June 5, 2021 Hello all, I have adenocarcinoma, stage III b NSCLC lung cancer, inoperable because one lymph node is near my collarbone. The oncologists are recommending radiation therapy (IMTR) 5 days a week for 6 weeks and chemo treatments once every 3 weeks(2-3 rounds) which will be Carboplatin and Pemetrexed. After radiation and chemo, the plan is that I will go on Durvalumab.(Imfinzi) If anyone has had experience with any of the treatments, please let me know. Also, any feedback is appreciated. Thank you. Link to comment Share on other sites More sharing options...
TJM Posted June 5, 2021 Share Posted June 5, 2021 Sounds like a sound approach. Dont fear the Chemo. Not pleasant but for many it's very tolerable. Others will chime in soon. Peace Tom Link to comment Share on other sites More sharing options...
Susan Cornett Posted June 5, 2021 Share Posted June 5, 2021 Hi Karen. I took Carboplatin and Pemetrexed but not together. I took another platinum-based chemo with pemetrexed. I highly recommend this site for chemo information. It has great information about possible side effects and ways to manage them. The most important thing to remember is to tell your medical team if you're having side effects. There are really good prescription options to manage nausea if it becomes an issue. Radiation wasn't too bad for me other than some minor difficulties swallowing. Others made it through with zero issues. Someone should chime in on the Durvalumab - I haven't taken it. Please keep us posted. Link to comment Share on other sites More sharing options...
LexieCat Posted June 5, 2021 Share Posted June 5, 2021 Here's a VERY long thread on Durvalumab. I haven't taken it, either. https://forums.lungevity.org/topic/44842-durvalumab/ I DID have four rounds of Carboplatin and Alimta, along with Keytruda. I had very few side effects, which were pretty tolerable. I did get hit with fatigue; any nausea was easily managed with the anti-nausea meds (I recommend you take them ONLY when you start to feel queasy--I took them regularly the first time and had the worst, most painful constipation in my life); and brain fog that bothered me only while I was working. I had a legal job that required a lot of complex analysis and just couldn't keep up with it. Sounds like they are planning pretty standard treatment for you. I didn't have radiation--the location of the tumor was such that the docs felt it would cause too much damage to my esophagus. Link to comment Share on other sites More sharing options...
KarenR Posted June 5, 2021 Author Share Posted June 5, 2021 Hi Lexie, The radiation oncologist said that the radiation was right on the edge of what they could do because the lymph nodes were fairly far from the tumor and they have to be able to get them all. They are going to do 4d imaging of the area next week and then radiation starts the 17th and chemo on the 18th. He said that I will most likely have some irritation to my esophagus due to proximity of the lymph nodes, but should be manageable. Thank you for the link to the Durma blog. Very informative! I’m so glad I found this site. You are all wonderful :) Best, Karen Link to comment Share on other sites More sharing options...
TerryB Posted June 5, 2021 Share Posted June 5, 2021 Hi Karen, Welcome. I have stage 3 also and they did not operate since they would have to remove whole lung and it spread to my bronchia(sp?). My chemo was etopiside and cisplatin. Radiation was for 33 sessions. Had etopisde days 1-5 and then three weeks later. Had cisplatin day 1 and also day 8 then three weeks later. I had two bad days with chemo the first round and should have asked for more nausea medication. The second round was not bad at all with nausea medication. The radiation was no problem. Only side effect was a week after it ended I had trouble swallowing and they prescribed Magic mouth wash that worked great. First post chemo scan Doctor thought was good since cancer shrunk a little and he thought just scarring/cancer debris that showed. The left lower lung was still partially collapsed that was from weight of mass I was told. Developed blood clots in my good lung and went on blood thinner. I then went on Durvalumab which I'm getting every two weeks for a year. Second scan two months later showed a little shrinkage and lower left lung was starting to inflate and blood clots gone. I developed pneumonia between 1st and 2nd scans. Not a big deal. Third scan showed that my lung deflated a little and something down there where my cancer is/was. Doctor told me it could be from radiation that ended a while ago, still inflammation from lingering effects on pneumonia or cancer is back/growing. He gave me options of getting another CT scan is 6 weeks or getting a Bronchoscopy/biopsy. I chose to get biopsy since the lung deflating made me a little nervous. Will be getting that on the 18th. I have had no side effects from Durvalumab at all and feel good. The frustrating part for my wife and I is that everything seems to be grey and not black/white. I'm sure you'll do well with your treatment and request nausea medication whenever you need. Link to comment Share on other sites More sharing options...
DAC Posted June 6, 2021 Share Posted June 6, 2021 Hi Karen, My oncologist prescribe a similar treatment for my stage 3 inoperable cancer - it was contained on my left lung and left hilar lymph nodes. I was given Carbo and Taxol on a weekly basis and radiation therapy daily for 6 weeks - currently I receive Durvalumab (imfizmi) once every 30 days for a year - I am part of a 10 year clinical study. My CAT scans show that everything is shrinking. I was a fatigued, constipated and bit nauseous from chemo, and did lose a lot of hair -my doctor prescribed mediations for nausea at the start of my treatment which I only took them when needed. Additionally I developed an intolerance to certain odors and my taste buds went a bit wacky. All of these symptoms have subsided and my hair is growing again. FYI a friend suggested I try warm prune juice for the constipation - yes, it tastes as bad as it sounds, but it worked better for me than over the counter laxatives. Since the radiation was so near to my esophagus I did have a difficult time eating or drinking after my last session - since it was over the holidays I was foolish and did not call my Doctors for help and suffered the consequences - lower potassium and dizziness and dropped 25 lbs in two weeks- this might have all be avoided if I'd called for help - so I advise you - don't hesitate ask for help when needed. Currently I have an itchy rash and hyper thyroid as side effects from the Durvalumab- my dermatologist prescribe a topical steroid for the rash and it works if I combine it with a moisturizer and don't towel dry before I apply. I just started thyroid medication. Not everyone will experience side effects from Durvalumab -your Dr. should keep tabs on your levels and prescribe treatments when necessary. The only medications I am taking is the thyroid medicine, the topical cream, Durvalumab and a multi-vitamin. The good news is that I feel better now and have more energy than I did before my diagnosis - I just turned 70 years old and I feel good about my treatment and my future. Every day is a gift and both of us can be around a long time because of science. You came to the right place for understanding. Good luck to you. Warm regards, Delia Link to comment Share on other sites More sharing options...
KarenR Posted June 6, 2021 Author Share Posted June 6, 2021 7 minutes ago, DAC said: Hi Karen, My oncologist prescribe a similar treatment for my stage 3 inoperable cancer - it was contained on my left lung and left hilar lymph nodes. I was given Carbo and Taxol on a weekly basis and radiation therapy daily for 6 weeks - currently I receive Durvalumab (imfizmi) once every 30 days for a year - I am part of a 10 year clinical study. My CAT scans show that everything is shrinking. I was a fatigued, constipated and bit nauseous from chemo, and did lose a lot of hair -my doctor prescribed mediations for nausea at the start of my treatment which I only took them when needed. Additionally I developed an intolerance to certain odors and my taste buds went a bit wacky. All of these symptoms have subsided and my hair is growing again. FYI a friend suggested I try warm prune juice for the constipation - yes, it tastes as bad as it sounds, but it worked better for me than over the counter laxatives. Since the radiation was so near to my esophagus I did have a difficult time eating or drinking after my last session - since it was over the holidays I was foolish and did not call my Doctors for help and suffered the consequences - lower potassium and dizziness and dropped 25 lbs in two weeks- this might have all be avoided if I'd called for help - so I advise you - don't hesitate ask for help when needed. Currently I have an itchy rash and hyper thyroid as side effects from the Durvalumab- my dermatologist prescribe a topical steroid for the rash and it works if I combine it with a moisturizer and don't towel dry before I apply. I just started thyroid medication. Not everyone will experience side effects from Durvalumab -your Dr. should keep tabs on your levels and prescribe treatments when necessary. The only medications I am taking is the thyroid medicine, the topical cream, Durvalumab and a multi-vitamin. The good news is that I feel better now and have more energy than I did before my diagnosis - I just turned 70 years old and I feel good about my treatment and my future. Every day is a gift and both of us can be around a long time because of science. You came to the right place for understanding. Good luck to you. Warm regards, Delia Thank you Delia for your insight and suggestions. I’m so happy to have found this site with people like you and all who have shared with me. Good luck to you as well! Best, Karen Link to comment Share on other sites More sharing options...
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