JuneK

@Sallysh I am so sorry to read about your situation. It appears we may be in the same boat. I hope not, because it is beginning to feel like my boat is sinking! I just found out I have brain mets. 😔 I meet with the radiologist on Thursday. I assume this probably means gamma knife, but will know more after my appointment. Another PET scan is scheduled for next week to see if there are other progressions in the body. I'm honestly more afraid of the PET scan results than the brain met treatment. 
I sincerely hope the U of Michigan can come up with more treatment options for you. I have met with Emory Cancer center and they are helping me look for clinical trials. It is overwhelming. I know lung cancer treatment has come a long way, but I sure wish they could figure out why immunotherapy fails so often. I even had a favorable PDL-1 score! I recently read an article suggesting gut health can play a roll. Now I wonder if something as simple as taking the right probiotic could have made a difference. All the 2nd guessing can drive you crazy and I know it is pointless. I try not to do it, but can't help it at times. Can't help but wonder, what went wrong? Is there something I could have done differently?
Praying for both of us! And all others on this site, of course. Please let us know what you find out. 
{Hugs} June

JuneK and Sally,
Hang in there, both of you!  It's definitely worth looking for clinical trials. You're in my thoughts.
 

You're both in my prayers.
Lou

@Sallysh I am so sorry to read about your situation. It appears we may be in the same boat. I hope not, because it is beginning to feel like my boat is sinking! I just found out I have brain mets. 😔 I meet with the radiologist on Thursday. I assume this probably means gamma knife, but will know more after my appointment. Another PET scan is scheduled for next week to see if there are other progressions in the body. I'm honestly more afraid of the PET scan results than the brain met treatment. 
I sincerely hope the U of Michigan can come up with more treatment options for you. I have met with Emory Cancer center and they are helping me look for clinical trials. It is overwhelming. I know lung cancer treatment has come a long way, but I sure wish they could figure out why immunotherapy fails so often. I even had a favorable PDL-1 score! I recently read an article suggesting gut health can play a roll. Now I wonder if something as simple as taking the right probiotic could have made a difference. All the 2nd guessing can drive you crazy and I know it is pointless. I try not to do it, but can't help it at times. Can't help but wonder, what went wrong? Is there something I could have done differently?
Praying for both of us! And all others on this site, of course. Please let us know what you find out. 
{Hugs} June

In researching clinical trials, I came upon some interesting info regarding BMF-219. It has shown great results for leukemia, and now they are looking at trials for lung cancers with any KRAS mutation. This is hopeful for me as I have one of the lesser known types - KRAS A146V.
Here are a couple of links I hope some will find interesting:
https://www.targetedonc.com/view/treatment-with-novel-kras-inhibitor-commences-in-phase-1-1b-study-covalent-10
https://aacrjournals.org/cancerres/article/82/12_Supplement/2665/699885/Abstract-2665-Irreversible-menin-inhibitor-BMF-219
Best to all, June

I was getting ready to post a very similar post. I had very good results from the chemo radiation. Tumor shrunk to almost nothing at end of April and no progression   Started on durvalumab in May. After three months a Ct scan showed lots f progression. A follow up PET scan indicated many lymph nodes, mass in right lung and spot on liver and spleen cyst now lighting up. Now on gemzar and carboplatin and basically told OS average 8-12 months. Stunned.  I have an appointment at U of Michigan this week and hope there is some other option. I still feel good, except emotionally.   

In researching clinical trials, I came upon some interesting info regarding BMF-219. It has shown great results for leukemia, and now they are looking at trials for lung cancers with any KRAS mutation. This is hopeful for me as I have one of the lesser known types - KRAS A146V.
Here are a couple of links I hope some will find interesting:
https://www.targetedonc.com/view/treatment-with-novel-kras-inhibitor-commences-in-phase-1-1b-study-covalent-10
https://aacrjournals.org/cancerres/article/82/12_Supplement/2665/699885/Abstract-2665-Irreversible-menin-inhibitor-BMF-219
Best to all, June

Struggling mightily here with some bad news from my recent PET scan. I think it’s all the harder because our hopes have been so high recently. After chemo & nivolumab last year, an upper right lobectomy in December, and continued nivolumab every 4 weeks since, things seemed to be going well. My surgery recovery was quite difficult, much more painful & drawn out than I expected, due to what they think is extensive nerve damage. I still have major discomfort from it, but have been doing my best to learn to deal with it. Had a CT scan in late February where nothing abnormal was noted other than a small pleural effusion. Went into this PET scan a couple of weeks ago with high hopes.
Blam, now the bad news. A completely new area of cancer, now on my left hip. Even worse, there are “areas of concern” in my right chest. Nothing definitive, but some areas of SUV uptake between 3 & 4, which they say could possibly be leftover inflammation from the surgery, but taking into account the new mets to the hip, most likely the start of new progression. I am beyond devastated. I felt like the immunotherapy was my one chance for a miracle, and now it seems to be failing. Even if not a cure, I had hoped to be able to get a few good years out of it like so many do. I have no targetable mutations to fall back on. Really struggling to fight off the despair I am feeling.
Of course my oncologist says not to give up hope. The tumor board reviewed my case on Tuesday & recommends to radiate the hip lesion as sometimes there can be “one-off” breakthrough mets. Because of the small chance that the other readings could be inflammation they want to wait another few weeks, then do another scan. They want to be absolutely sure before abandoning the Opdivo. But if there is truly more growth it will mean discontinuing Opdivo, then on to more chemo, a different kind this time.
In the meantime I have an appointment with Emory Winship Cancer Institute next Friday for a second opinion. My oncologist also suggested we start researching clinical trials.
I've waited a while to post this, in hopes that I could rally some courage and be more upbeat, but that hasn't worked out, lol. I don't even know what advice I am seeking. Searching for courage but having a harder time finding it this time around. 😔

In researching clinical trials, I came upon some interesting info regarding BMF-219. It has shown great results for leukemia, and now they are looking at trials for lung cancers with any KRAS mutation. This is hopeful for me as I have one of the lesser known types - KRAS A146V.
Here are a couple of links I hope some will find interesting:
https://www.targetedonc.com/view/treatment-with-novel-kras-inhibitor-commences-in-phase-1-1b-study-covalent-10
https://aacrjournals.org/cancerres/article/82/12_Supplement/2665/699885/Abstract-2665-Irreversible-menin-inhibitor-BMF-219
Best to all, June

Congratulations Lou! Always so nice to read good news.😊

All the best to you, Rikke! I'll be sending many prayers and good vibes for a successful surgery. Just think how awesome it will be to get the last of the cancer out. I don't want to minimize your concerns, but I would happily trade a lifetime of steroids for no cancer in my body!
Best,
June

All the best to you, Rikke! I'll be sending many prayers and good vibes for a successful surgery. Just think how awesome it will be to get the last of the cancer out. I don't want to minimize your concerns, but I would happily trade a lifetime of steroids for no cancer in my body!
Best,
June

A few more days to go. Had a lovely trip to Denmark - bit of seaside, cocktails in the harbour and a banging Depeche Mode concert. Also had a good chat with a beautiful and vivacious old friend who I discovered has lived on steroids for 20+ years and I had no idea - so that was encouraging. I am as ready as I will ever be, although nervous about cancellation like last time. Will try to fill up my days with golf and gardening. Send me good vibes please x

Thank you both, Lou & Tom. I especially appreciate your thoughts about courage, Tom. Sometimes I feel as though I'm some sort of "failure" in that regard. I do try to fake it in front of others, mostly for my family's sake, lol. I feel a little better today - I think just the act of writing out my post helped me in some small way. I guess sharing the burden lightens it a wee bit...
Thanks for listening. I have a feeling I will have many questions in the coming weeks.
Best to all,
June

Thank you both, Lou & Tom. I especially appreciate your thoughts about courage, Tom. Sometimes I feel as though I'm some sort of "failure" in that regard. I do try to fake it in front of others, mostly for my family's sake, lol. I feel a little better today - I think just the act of writing out my post helped me in some small way. I guess sharing the burden lightens it a wee bit...
Thanks for listening. I have a feeling I will have many questions in the coming weeks.
Best to all,
June

Thank you both, Lou & Tom. I especially appreciate your thoughts about courage, Tom. Sometimes I feel as though I'm some sort of "failure" in that regard. I do try to fake it in front of others, mostly for my family's sake, lol. I feel a little better today - I think just the act of writing out my post helped me in some small way. I guess sharing the burden lightens it a wee bit...
Thanks for listening. I have a feeling I will have many questions in the coming weeks.
Best to all,
June

June,
I traveled your path but my recurrence was 3 tumors in my remaining lung after surgery. And this was well before immunotherapy was a thing. I had precision radiation to zap the recurrent disease and was "one and done" after that. So I'm a sure-kill precision radiation advocate!
I've found there is no noble cause fighting lung cancer. All the courage in the world is not going to change outcomes. You are doing the right thing. Precision radiation and a second opinion are the best next steps. You don't need courage; you've received cogent treatment recommendations. Hang in there and...
Stay the course.
Tom

June,
I'm sorry to hear about your scan, but let's take a step back and wait for there to be a clear and defined diagnosis.  I personally have not had any radiation therapy, but I've heard many here rave about results particularly for mets throughout the body.  Once the hip lesion is gone the next thing is to continue the watch on the areas they believe may be inflammation.  I'm glad you will get a second opinion, but this is not the time to become despondent.  I was the king of "catastrophizing" when I found out I had cancer (2010-colorectal, 2019-lung RLL) so I fully understand how easily our emotions can take a hold of us.  Please hold on and do your best to stay focused on the tasks at hand...radiation of the met...monitor the abnormality...confirm a diagnosis (which may even be inflammation) and then proceed from there.  Surely this is a recurrent disease, but let's not put you back at square one until you have all the data and your second opinion.
There are some good questions to ask your doctor(s) about the radiation therapy and even the immunotherapy and they can be found here.
Lou

I am so very sad to hear this. Justin was one of the first people to offer sympathy and support when I first joined this group last year. He was always so kind and empathetic. Izzy, my heart aches for you. I can't imagine the pain you are feeling. I hope you can take some comfort in knowing he is now at peace and also in knowing how much he meant to so many people. He will never be forgotten.

I am so very sad to hear this. Justin was one of the first people to offer sympathy and support when I first joined this group last year. He was always so kind and empathetic. Izzy, my heart aches for you. I can't imagine the pain you are feeling. I hope you can take some comfort in knowing he is now at peace and also in knowing how much he meant to so many people. He will never be forgotten.

Thanks Karen, yes - getting to a point where surgery is even recommended is actually great news. When I was first diagnosed, the medical team didn’t think there was any point since the cancer had spread to my lymph nodes. So yay to that!
I am still awaiting an appointment with the surgeon, so don’t know anything yet. From what I can gather, I shouldn’t need medication, at least in the medium/long term, although some cortisol might be required while the other adrenal gland learns to do the job.

Thank you everyone for those lovely messages, just doesn't seem real, he was such a huge force in this world and in our lives that it'll take a lifetime to get over this, he was a one off with his wicked sense of humour and his incredible story telling that my life will never be the same again, thanks again for your support xxx love Izzy xxx

Hi Justin,
Last August thru October I had 4 cycles of Carboplatin & Pemetrexed (Alimta) & Nivolumab (Opdivo) infusions taken every 3 weeks. My main issue was nausea. It would usually start 2 days after treatment and be bad for about 3 or 4 days. Then I would be so weak from the nausea days it would take another few days to eat enough to start getting my strength back. By the third week I would be feeling much better. Just in time for the next treatment! So for me the symptoms were worse days 3 through 5 & gradually improved after that. I’m not sure why your peak would be day 14. Maybe my dosages were different from yours? Fortunately, I never got mouth sores, but they told me about a special mouth wash if that happened. I did get terrible dry mouth from some of the anti-nausea drugs. They always told me to drink as much water as possible. I got so tired of drinking water but I do think it helps to flush out some of the bad stuff. It is so hard to drink it though when you have nausea. My goal was around 84 ounces per day & I usually made it.
Zofran helped a bit with my nausea but was just not enough. They added Compazine and then later we tried Olanzapine. The Olanzapine helped the nausea but made my blood pressure go so low I passed out twice & had to stop taking it. I woke up once on the floor & my poor husband was so freaked out he had called the paramedics. They almost made me go to the ER due to the low blood pressure, but it gradually started coming back after drinking a big electrolyte drink. So we never did find a perfect solution for the nausea - the Zofran made it just bearable & I basically toughed it out because I gave up on the other drugs by then with their weird side effects. Luckily it only lasted a few days of each cycle, but those were miserable days. I learned to take Miralax as soon as I took any nausea meds and that helped prevent the terrible constipation. (It only takes one failure to learn that lesson, oof!) The rest of the time was just dealing with fatigue, etc. Of course the overall anxiety of everything also wears you down. 
Sorry, that's probably not really much help. I do hope you improve in the next week. Just remember it's all the price for a good result and in the end will be worth it! Looking back on the treatment it just seems like an unpleasant dream. All the best to you, Justin!
Take care,
June

Hi Justin,
Last August thru October I had 4 cycles of Carboplatin & Pemetrexed (Alimta) & Nivolumab (Opdivo) infusions taken every 3 weeks. My main issue was nausea. It would usually start 2 days after treatment and be bad for about 3 or 4 days. Then I would be so weak from the nausea days it would take another few days to eat enough to start getting my strength back. By the third week I would be feeling much better. Just in time for the next treatment! So for me the symptoms were worse days 3 through 5 & gradually improved after that. I’m not sure why your peak would be day 14. Maybe my dosages were different from yours? Fortunately, I never got mouth sores, but they told me about a special mouth wash if that happened. I did get terrible dry mouth from some of the anti-nausea drugs. They always told me to drink as much water as possible. I got so tired of drinking water but I do think it helps to flush out some of the bad stuff. It is so hard to drink it though when you have nausea. My goal was around 84 ounces per day & I usually made it.
Zofran helped a bit with my nausea but was just not enough. They added Compazine and then later we tried Olanzapine. The Olanzapine helped the nausea but made my blood pressure go so low I passed out twice & had to stop taking it. I woke up once on the floor & my poor husband was so freaked out he had called the paramedics. They almost made me go to the ER due to the low blood pressure, but it gradually started coming back after drinking a big electrolyte drink. So we never did find a perfect solution for the nausea - the Zofran made it just bearable & I basically toughed it out because I gave up on the other drugs by then with their weird side effects. Luckily it only lasted a few days of each cycle, but those were miserable days. I learned to take Miralax as soon as I took any nausea meds and that helped prevent the terrible constipation. (It only takes one failure to learn that lesson, oof!) The rest of the time was just dealing with fatigue, etc. Of course the overall anxiety of everything also wears you down. 
Sorry, that's probably not really much help. I do hope you improve in the next week. Just remember it's all the price for a good result and in the end will be worth it! Looking back on the treatment it just seems like an unpleasant dream. All the best to you, Justin!
Take care,
June

Hi Justin,
Last August thru October I had 4 cycles of Carboplatin & Pemetrexed (Alimta) & Nivolumab (Opdivo) infusions taken every 3 weeks. My main issue was nausea. It would usually start 2 days after treatment and be bad for about 3 or 4 days. Then I would be so weak from the nausea days it would take another few days to eat enough to start getting my strength back. By the third week I would be feeling much better. Just in time for the next treatment! So for me the symptoms were worse days 3 through 5 & gradually improved after that. I’m not sure why your peak would be day 14. Maybe my dosages were different from yours? Fortunately, I never got mouth sores, but they told me about a special mouth wash if that happened. I did get terrible dry mouth from some of the anti-nausea drugs. They always told me to drink as much water as possible. I got so tired of drinking water but I do think it helps to flush out some of the bad stuff. It is so hard to drink it though when you have nausea. My goal was around 84 ounces per day & I usually made it.
Zofran helped a bit with my nausea but was just not enough. They added Compazine and then later we tried Olanzapine. The Olanzapine helped the nausea but made my blood pressure go so low I passed out twice & had to stop taking it. I woke up once on the floor & my poor husband was so freaked out he had called the paramedics. They almost made me go to the ER due to the low blood pressure, but it gradually started coming back after drinking a big electrolyte drink. So we never did find a perfect solution for the nausea - the Zofran made it just bearable & I basically toughed it out because I gave up on the other drugs by then with their weird side effects. Luckily it only lasted a few days of each cycle, but those were miserable days. I learned to take Miralax as soon as I took any nausea meds and that helped prevent the terrible constipation. (It only takes one failure to learn that lesson, oof!) The rest of the time was just dealing with fatigue, etc. Of course the overall anxiety of everything also wears you down. 
Sorry, that's probably not really much help. I do hope you improve in the next week. Just remember it's all the price for a good result and in the end will be worth it! Looking back on the treatment it just seems like an unpleasant dream. All the best to you, Justin!
Take care,
June