LisaWyo Posted October 30, 2018 Share Posted October 30, 2018 Hi everyone. In February of this year my husband was diagnosed with stage 3 non small cell lung cancer. One lymph node was involved. He underwent 7 weeks of radiation and 7 chemo treatments, finishing the end of April. In July be began a year’s worth of immunotherapy every other week-Imfinsi or Infinsi? I guess its brand new at least in our area of the country. He just had a PET scan and its back in both the lung and the lymph node-smaller than before (20-30% of what it was at diagnosis), but back only 6 months later. I just dont know what to think now. After all the treatment its back in 6 months? Does anyone else have any similar experiences? Any information or help is greatly appreciated. Link to comment Share on other sites More sharing options...
Susan Cornett Posted October 30, 2018 Share Posted October 30, 2018 Lisa, This cancer is persistent to say the least and recurrences are not unusual. I had surgery and chemo in 2016 - finished treatment in June of that year. By February 2017, I had a recurrence in a lymph node. I went through chemo and radiation and finished that in July 2017. By January 2018, I had a new nodule in my lung. I finished treatment for that in September. All that to say that I understand the frustration. Unfortunately, it's what becomes our "new" normal after diagnosis for quite a few of us. There are some who catch it early and never have a recurrence. But quite a few of us deal with at least one recurrence. Hang in there and let us know how we can help you. Link to comment Share on other sites More sharing options...
Tom Galli Posted October 30, 2018 Share Posted October 30, 2018 Lisa, Like Susan, I battled recurrence -- 4 in total. Here is information on the frequency of lung cancer recurrence after "successful" treatment. Many of us have a similar experience and the only solution I'm aware of is additional treatment. The fact that the tumors are appearing smaller than initial discovery may mean the immunotherapy treatment had an effect. Let's hope additional immunotherapy does the trick. Stay the course. Tom Link to comment Share on other sites More sharing options...
LisaWyo Posted October 31, 2018 Author Share Posted October 31, 2018 Thank you, Susan and Tom, for taking the time to reply. My husband got some relief from knowing that his condition isn’t unusual. I’m wondering if either of you got any course of immunotherapy? I guess we thought it was supposed to help the recurrence rates but it didnt seem to work that way for him. Thanks again, Lisa Link to comment Share on other sites More sharing options...
LaurenH Posted November 8, 2018 Share Posted November 8, 2018 Hi, Lisa, I'm glad to see that you've connected with Susan and Tom. I'll also reach out to some more of our members who have taken immunotherapy and ask them to share their insight and experience in this thread. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Kleo Posted November 8, 2018 Share Posted November 8, 2018 Hi Lisa! I have just started on this immunotherapy drug myself. It's so new not many people have experience with it. It is a PDL1 inhibitor so perhaps if your hubby has low PDL1 markers, it may not work as fast for him? Just speculation on my part. What has the oncologist suggested? Continue with immuno? Link to comment Share on other sites More sharing options...
Lisa Haines Posted November 10, 2018 Share Posted November 10, 2018 HI Lisa, I am Lisa too and I am also a Stage IV NSCLC patient diagnosed in March 2015. I also had a brain met and pulmonary embolism and was very ill very suddenly with only two days warning and that was vertigo like symptoms - Never had any cough and clue I had Lung Cancer, so it came as a quick a shock. They found the brain tumor first and I was immediately hospitalized and that's when we also learned I had a tumor in lung Right Lung and lymph node involvement. My treatment after Cyberknife for the Brian met, was with with Chemo (Carbo and Pemetrexed) this was before Immunotherapy had been FDA approved. I did very well with Chemo and actually reached NED that first summer and then was put on Maintenance. By October the Cancer was back and the lung tumor was larger and more aggressive then it had been at diagnosis, so YES I was pretty upset and discouraged, but I still had more treatment options, so we moved forward. Next I had Radiation followed by Immunotherapy "Opdivo" which by then had been FDA approved as a second line treatment for Stage IV Patients. It worked quite well for me and I'm now "thankful" to be stable and off all treatment. Imfinzi is still new and was only FDA approved last February. Tgere are quite a few people who post on "Inspire" that are on this drug. This is a link they started where they all share their experiences https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/duravalumab-imfinzi-patients-support-group/ - You may also want to join Inspire and check out the thread. Imfinzi is also known as Durvalumab, so searching under the name may help you find more on it. It's the first Immunotherapy for Stage III, as you know. I know Stage IV patients who had what is known as "Pseudo Progression" when the first started Immunotherapy, but they stayed on it and on their next scans had better results and continued to do so. I'm not as familiar with Imfinzi and whether or not it too can cause this type of "Pseudo Progression" which in some cases was actually inflammation. It's something to talk to his Oncology team about and see if they plan to keep him on it to give it more time? Lung Cancer is a very tough illness and progresses quite often -- try no to be discouraged and continue to "think positive" and hope he'll have better results soon and/or that he can move on to another treatment that may work better for him. Wishing you both the very best.... Lisa Link to comment Share on other sites More sharing options...
Susan Cornett Posted November 11, 2018 Share Posted November 11, 2018 Lisa, I have not had any immunotherapy. My cancer doesn't have any markers, and my PDL1 number is low. Link to comment Share on other sites More sharing options...
Hbcollins64 Posted December 30, 2018 Share Posted December 30, 2018 I am new to this forum. My husband was diagnosed Feb 2018 with stage IV non-small cell lung ca. He had a large tumor in the right and 2 small ones in left with mediastinal lymph involvement. After the initial rounds of chemo/ radiation his scans were completely clear. He was started on Imfimzi as well even without the marker the Oncologist felt it would help recurrence. His last PET scan was completely clear and we were very optimistic. However, his CEA was all over and slowly climbing. Brain MRI was done and sure enough there’s a tumor in the right middle lobe. We will treat with radiation SRS. So we feel the frustration and fear and not really sure if the Imfimzi is worth it. Hoping this forum will help give us hope and good information from others in the same situation. Link to comment Share on other sites More sharing options...
Tom Galli Posted December 30, 2018 Share Posted December 30, 2018 Hb, Welcome here. I do hope the precision radiation fries the brain met. I had a form of stereotactic radiation (SBRT) for a persistent lung tumor that proved resistant to chemo. It likely saved my life. I know many who’ve had successful SRS for brain mets. I understand both your frustration and fear. Many here have the same feeling. We give each other encouragement and understanding and of course we believe that “hope is maybe the best of things.” Stay the course. Tom Link to comment Share on other sites More sharing options...
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