Monica7 Posted September 8, 2016 Share Posted September 8, 2016 Hello everyone. I am about to begin a clinical trail with the use of Nivolumab along with the introduction of Ipilimumab. I have Stage 4 adenocarcinoma which has spread to my bones and brain. Does anyone have any input on this trial? Quote Link to comment Share on other sites More sharing options...
Martin Posted September 11, 2016 Share Posted September 11, 2016 Hi Monica, i was diagnosed stage 4 adenocarcinoma about five weeks ago. Initially it was thought to be stage 1, but during surgery it was discovered that there was spread to the pleura and so I am now stage 4 as well. I am waiting for genetic testing in my cancer to come back so I can pick the treatment approach. If I have the applicable mutation, I am leaning towards targeted therapy. But, like you, I am also considering a clinical trial involving the two immunotherapy drugs you mentioned. Not sure what to do myself, but if targeted therapy is not a match for me, I am thinking of trying the combo of immune therapies. If you get any good info, please let me know and I will do the same for you if I hear of something. All the best to you. Let's fight this thing. Martin Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Monica7 Posted September 13, 2016 Author Share Posted September 13, 2016 Hello Martin I'm glad to know there is someone else out there who has heard of this particular clinical trial. I am nervous yet excited all at once. Nervous that I may have wasted precious time if my body does not respond like the more conventional treatments yet excited that if the results are heading in a positive direction I can live without all the nasty side effects. Please do let me know if this is the course of treatment you have chosen. Best wishes in your fight. Tom Galli and Merilee 2 Quote Link to comment Share on other sites More sharing options...
Dirma Posted September 14, 2016 Share Posted September 14, 2016 My husband was diagnosed with stage 4 adinocarcinoma. He will likely start chemo next week. Because he is 76, his treatment will be to extend his quality of life for as long as possible. Has anyone had other treatments which offer more hope? Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted September 15, 2016 Share Posted September 15, 2016 Dirma, Welcome here and you've started by asking a very tough question indeed. Unfortunately, for most of us, even those diagnosed at an early stage, when it comes to treatment with chemotherapy alone, we are in either an extend life or extend quality of life situation. Are there treatments that offer more hope? I'm assuming a biopsy was performed and your husband was screened for suitability for targeted treatment. Here is some information about these and you might ask if your husband's type of adenocarcinoma is treatable with these new forms of chemotherapy - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy Are there complicating health problems that his doctor is concerned about that limit his treatment options? I guess we need to know more about your husband's disease to give fuller answer to your important question. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
Dirma Posted September 20, 2016 Share Posted September 20, 2016 He does not have a genetic mutation. Has a pacemaker for afib. Has excrutiating groin pain which has not been diagnosed as yet. They think unrealted to the stage 4 lung cancer. They do not want to start chemo until the pain is alleviated as he istoo weak. He is now on painkillers oxycondin and oxycotin and is getting even weaker. Seeing a rheumatolgist this week to see if he can identify the pain. While in some bones, not in the left pelvic bone. It is. Very frustrating that noone is able to identify this pain. He only was diagnosed with lung cancer because i insisted he be screened with a lung CT. Quote Link to comment Share on other sites More sharing options...
Martin Posted September 20, 2016 Share Posted September 20, 2016 Hello again, i am starting the screening process for the clinical trial of the combination of opdivo and yervoy this week. The trial aspect for nsclc is the combo and the fact that it's being used as first line treatment. I'm not sure how long the screening process will take, but I hope to get started very soon. It's been 7 weeks since my initial diagnosis and I don't want to wait a any longer. I'll keep you guys updated to see how it goes. I'm nervous about it, but hopeful that it will work for me. Genetic testing of my tumor finally came back and I was disappointed that I had no mutations that would work for targeted therapy. Everyone please keep your chins up and let's stay in touch. All the best, Martin Quote Link to comment Share on other sites More sharing options...
Dirma Posted September 20, 2016 Share Posted September 20, 2016 Good luck to both of you with this treatment. Do you know if it is being offered I the NY or CT region? diane Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted September 20, 2016 Share Posted September 20, 2016 Diane, No mutations and pain from undiagnosed cause, he is in the hard row to hoe. The pacemaker ought to control AFIB so that is not limiting but the pain is. I wish I had a magic wand you could wave to calm the storm. I can't tell you what to do, but here is what I would do if I was in your husband's row. Having experienced pain and in fact living with chronic pain, I'd find an answer to that first. There is no way to enjoy anything in life with pain. Then once a pain strategy is found, perhaps a palliative treatment, that minimizes it, I'd make a treatment decision. The treatment decision will involve you and your husband asking and answering three questions: do we treat, do we try curative treatment, or do we seek palliative treatment. These are hard questions to ask and answer and almost without exception, each late stage diagnosed lung cancer survivor is presented with these three questions. And, unique to cancer, having made a choice, you may need to revisit each of these three questions again in the future. But, for now I'd press for a solution to his pain. Stay connected with us Diane. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
Dirma Posted September 21, 2016 Share Posted September 21, 2016 Thanks Tom. Saw oncologist at MSK last evening and decided to start treatment with him. While stage 4 he felt treatment would work to give quality of life as it is not in his organs he believes pain is from the cancer and chemo will address it. Not curable but manageable *ss it is not in that many areas. Hope he is right. One step at a time! Giving steroids for inflammation and to improve appetite. Thanks, Diane Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Monica7 Posted September 30, 2016 Author Share Posted September 30, 2016 On September 7, 2016 at 9:06 PM, Monica7 said: Hello everyone. I am about to begin a clinical trail with the use of Nivolumab along with the introduction of Ipilimumab. I have Stage 4 adenocarcinoma which has spread to my bones and brain. Does anyone have any input on this trial? Hi everyone I really promise to work on learning this blog lol. Well anyhow July 23rd was the big day for me I started the trial. So far so go with side effects just alittle dizziness and a slight new cough. Oh and alittle more sleep than normal but that could be all in my head. Hope everyone is doing great. And good luck with the screening Martin Quote Link to comment Share on other sites More sharing options...
Martin Posted October 14, 2016 Share Posted October 14, 2016 Hi Monica, I received my first treatment in the clinical trial last week. Doing ok so far, main side effects are lack of energy and increased coughing/ hoarseness. Please keep me updated on how you are doing. Take care. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Monica7 Posted November 2, 2016 Author Share Posted November 2, 2016 Hello Everyone Well here we go Friday is the big day my first CT scan since I have started this trial. I am so nervous, worried like crazy this isn't the correct treatment for me. Don't get me wrong I love being on this trial due to the limited side effects I am just concerned about this not working for me and all the time wasted ugh. Friday can't come soon enough. Can you tell this is the first treatment and scan I have received since I was diagnosed as a stage 4 in July. Just nervous and rambling. Quote Link to comment Share on other sites More sharing options...
RuthieThomas Posted November 2, 2016 Share Posted November 2, 2016 Hi Monica, As usual, I don't have any actual useful information, but just wanted to wish you the best & join you in hurrying Friday along. Prayers & peaceful thoughts going your way. Ruthie Monica7 1 Quote Link to comment Share on other sites More sharing options...
Monica7 Posted November 2, 2016 Author Share Posted November 2, 2016 Thank you Ruthie. Hoping for the best or at the very least stable. Just wondering how often do people typically get a PET scan during treatment to ensure the cancer has not spread? Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted November 2, 2016 Share Posted November 2, 2016 Monica, To your questions about the frequency of PET scans during treatment, during my chemo I had a CT scan halfway through the infusion period and a PET after. That was when I was working and had a feature-rich health insurance policy. Now having graduated to medicare, I may not have a PET scan again in my life. But, after 3 years of treatment, my oncologist developed a sense about my lung cancer and that sense told him it would remain in my lung and if it were to re-occur, it would re-occur in my lung. So now I receive semi-annual CT scans to the chest prior to my oncology consultation. One thing to make clear, however: you'll see an oncologist regularly for the rest of your life. This is because our disease has a nasty habit of returning. Stay the course. Tom Martin and Monica7 2 Quote Link to comment Share on other sites More sharing options...
Martin Posted November 2, 2016 Share Posted November 2, 2016 Hi Monica, I'll be thinking about you on Friday. I hope all goes well. I'll be getting my third treatment that same day and hoping for good results as well. Please keep us updated and keep your chin up. From what I've been told, the first scans are often not the most informative as it may take a while for the treatment we've selected to show results. But I know exactly how you feel believe me. Take care and stay in touch, Martin Monica7 1 Quote Link to comment Share on other sites More sharing options...
Monica7 Posted November 3, 2016 Author Share Posted November 3, 2016 Thank you guys. Tom I too don't have the greatest health insurance I guess I should have been more selective had I known. Martin thank you for the heads up on not to expect to much. I'm just hoping at the very least I'm stable so I can stay on the trial. I have had minor side effects and would love to keep it that way. Keeping all of you in my thoughts thank you ? Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
LaurenH Posted November 8, 2016 Share Posted November 8, 2016 You're in our thoughts too, Monica! Stay positive! Quote Link to comment Share on other sites More sharing options...
Monica7 Posted November 8, 2016 Author Share Posted November 8, 2016 Hello everyone, sorry for not posting sooner I have just been overwhelmed with joy and happiness! Walking into my first scan last Friday after completing only three rounds of treatment I was hoping at best for stability to be able to remain in the trial. Well needless to say my Doctor could barely maintain his composure as he spun the computer around showing a 50% reduction in a 6 cm tumor in my right lung and the smaller one was completely gone. Even the tumor in my L2 vertebrae shows significant signs of improvement. Based on the fact the my Doctor heads up the trial at Dana Farber I honesty couldn't tell you who was more excited! My thoughts and prayers are with everyone undergoing some form of treatment on this site I'm also excited and very fortunate to be apart of cutting edge technology to not only help myself but others as well. Good luck Martin I'm pulling for you! Martin, LaurenH and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
Dirma Posted November 9, 2016 Share Posted November 9, 2016 I am very excited for you. My husband had his results from two chemo and immunotherapy treatments and his tumors have shrunk considerably. We will revisit after todays and the next treatment in 3 weeks. He is being treated at Sloan Kettering. I am thinking the fight is worth it now that we have had so e pisitive results. Tom Galli, Monica7, Martin and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 9, 2016 Share Posted November 9, 2016 Monica what great news. Thanks so much for sharing it with us. I am so happy for you. I pray you bring us even more great news in the future ! Donna G Monica7 1 Quote Link to comment Share on other sites More sharing options...
Martin Posted November 9, 2016 Share Posted November 9, 2016 Way to go Monica and Dirma!!! I am so happy for both of you! Keep fighting this thing- we're all in this together! All the best, Martin Monica7 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted November 9, 2016 Share Posted November 9, 2016 Monica, My oh my! I am speechless! I have no words. Well maybe one: JOY. That is not enough, so JOY, JOY, JOY, & JOY. Maybe that is still not enough so I'll add some more: awesome, spectacular, astounding, and how about just plain good stuff! Drive on and. Stay the course. Tom Monica7 and Martin 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted November 10, 2016 Share Posted November 10, 2016 Dirma, All the election drama caused me to miss your superb report on your husband's treatment. Tumors have shrunk considerably! What fantastic news! Do something special to celebrate. During my chemo and because of all the steroids I had to take before infusion and during the infusion, I'd get as hungry as a hibernating bear. Martha and I would go to Denny's and I'd order two Grand Slam breakfasts, one right after another! It was a little thing but it was our little celebration of life. I know you now understand that undergoing treatment often yields extra life. This is exactly the situation you've reported -- tumors on the decline. Don't forget to celebrate. Don't forget to live. Find joy in living. Stay the course. Tom LaurenH and Monica7 2 Quote Link to comment Share on other sites More sharing options...
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