I'm a recently diagnosed Stage IV 4B NSCLC patient (24 years old) with the KRAS G13D genetic mutation identified in my genetic screening. I've been in 2 rounds of chemo with Cisplatin + Pexemetred with plans to add Keytruda to round 3 and 4. However, my cancer is not responding to my 2nd rounds of chemo and I have new spots in my body. The scans are "concerning" according to my doctor. The new plan is to combination of dual immunotherapy with two immunotherapy drugs nivolumab and ipilimumab.
Has anyone gone through a similar journey when 1st line treatment didn't work and pivoted? I am fairly new to the immunotherapy drugs and my genetic mutation and wanted to see if anyone who had experience with either can help educate me? Thank you in advance for your time and help.
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CuteLabrador123
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Good morning, sorry to hear about your diagnosis. You can get a lot of help and support from this group, it has helped us a lot. My husband was diagnosed 4 yrs ago with stage 4 nsclc with a prognosis of 18-24 months. He has been having chemotherapy and immunotherapy for approx 3 months on and 3 months off treatment to give his body a break. There has been some shrinkage shown and he is stable at present. I will confirm the names of treatment used later to get it right. It has been a bit of a tough journey but nothing too serious and he is coping well. Wishing you all the best on your journey, you will be in my prayers. Stay positive as best you can. If I can be of any use you feel free to ask anytime 🙏🙏🙏
Hi Jando 2021, thank you for your detailed response. If you can provide the names of the treatment, that'd be great! Congrats to your husband and praying for his continued remission!
The treatment was Pernitumunab and Cisplatin. At first he suffered with mouth ulcers and couldn’t eat, got that sorted with caphosol and Gelclair, worked really well. The immunotherapy can badly affect your skin, for that we use Clindamycin, very good too. There can be highs and lows but stay strong positive and eat well. Sending you big hugs 🙏🙏🙏Hope this helps, stay in touch x
I have KRAS g12V - Stage IV NSCLC and am now close to an 8 year survivor--currently NED thanks to Immunotherapy Nivolumab (Opdivo) which was my second line treatment back in 2015 shortly after it was FDA approved. I started with Chemo (Carboplatin and Pemetrexed) after stereotactic radiation for a brain met. I would like to recommend you join the KRAS Kickers Group where you can reach out to others with the KRAS mutation. As you may know currently there is not a targeted treatment specific to 13D. The triplet you are on is currently the standard of care. The KRAS Kickers are a wonderful additional support system and have very active group on Facebook. I wish you the very best and hope your treatment will be very effective. ~ Lisa
Thank you for your detailed response! Out of curiosity, did you switch to immunotherapy after your 1st line of chemo didn't work? Or did you switch just to try something different? I'm asking because my cancer actually grew during my 1st line treatment (new spots) and feeling a bit dejected.
When I was first on Chemo it's because that was the standard treatment, Immunotherapy had not yet been FDA approved. After I had progression, I did then go on Nivolumab which at that time has been FDA approved as a second line treatment. Now it's often used First line or in combo with another immunotherapy. I wish you the very best and HOPE you will find the best possible treatment.
You mentioned elsewhere that you have shared your story with the KRAS Kickers. Thank you for that. Would you be able to help further research into identifying risk factors that lead to lung cancer in younger (under 40 yo) adults?
The Go2 Foundation that sponsors this webpage also sponsors a study that seeks to find answers. You can learn more about it and the link to participate here: go2.org/research/our-resear...
I am so sorry to hear about your diagnosis. My story is similar to Lisa The Purple Place who replied above. I was diagnosed Stage IV NSCLC in April2015. At the time, the standard of care was chemotherapy. I had Carboplatin and pemetrexed at first and then dropped the carboplatin after eight doses and continued with pemetrexed until my lungs were no longer stable. (I have had metastases to my brain that was treated with surgery and later with stereotactic radiation). So, my first line was successful for quite a while before it failed. Oct 31, 2019 my scans showed growth of lesions in my lungs. I had Sterotactic Body radiation Treatment. December 2019, I started a new treatment protocol since the first line was no longer holding the cancer in my chest stable. I received the doublet that was on the cusp of FDA approval but was made available to me: Yervoy and Opdivo (ipilimumab and nivolumab). After the standard number of treatments, we discontinued the Yervoy, and I continue with monthly Opdivo. My cancer in brain and body have remained stable. I also have a KRAS G12D and MSH2 (this doublet was FDA approved at that time for MSH2). My initial response to Yervoy plus Opdivo included a “flare,” which created ascites in my abdomen that was very uncomfortable and scary, but it went away after a few weeks.
You will find many people on this site who have had to move from first line to the next after the cancer progressed. I was 44 at diagnosis, and my hope has been-and continues to be-that my cancer will stay stable long enough on the current treatment for researchers to make another breakthrough, and then do that again for a very long time. Yes, lung cancer is on the rise in young, healthy women like you and me; cancer research continues to make amazing progress, too. LungMatch at GO2foundation may be able to help you learn about treatment options, too.
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