JuneK

I am so happy to hear this, Karen! Congrats to you!

I am so happy to hear this, Karen! Congrats to you!

I am so happy to hear this, Karen! Congrats to you!

No changes to what was there post-treatment (i.e., that pneumonitis walloped my right lung), but nothing new  is going on.
Ain’t it grand to be boring?!

Hi Rosie!
Yes, it sounds like we had almost the exact same Opdivo experience on our second infusions! I had no problems at all with the first one. Then I had my third treatment on Sept 8th. Even though they gave me both Benadryl and steroids up front, I still had the severe back pain about 10 minutes in. It was very upsetting, because I'm thinking "Now, what do we do?". So they stopped it and had a big consultation. The oncologist decided to move on to the Alimta & Carboplatin and then try the Opdivo again afterward. For some reason this worked and I was able to finish the Opdivo afterward with no more pain. But I was told that after two bad reactions it is sometimes recommended to stop that drug & try something else, possibly Keytruda.
My next infusion is this Thursday the 29th (same as yours!). A nurse called last week and told me the oncologist decided he wants to try the Opdivo once again, but this time change the order & do it after the chemo drugs. I don't really understand how that would help, but maybe it's to give more time for the Benadryl and steroids to take effect? I'm pretty sure if I have the reaction again, they will discontinue the Opdivo. 
So now I am now getting quite stressed over this next treatment. If it doesn't work and I have to change to Keytruda, I worry that I might have a similar reaction to that one, too (since I assume the drugs work in a similar manner?). Since I'm not eligible for any targeted therapy drugs, I feel like these are my only hope! This is why I was so disappointed that I did not have one of the "good" mutations.
Also, I had not ever heard that the steroids could have a negative effect on the immunotherapy. That is a little concerning, but I guess if it helps me to take it maybe it is worth it. I will have to ask about that at some point.
I certainly hope the pre-treatment Benadryl works perfectly for you. I think it usually does, as they seemed a bit surprised that it didn't work for me. So you will most likely do fine, and I sincerely wish you the best of luck! Please let us know afterward how it goes. And please cross your fingers for me also  . 
Best to all,
June
 

Hi Rosie!
Yes, it sounds like we had almost the exact same Opdivo experience on our second infusions! I had no problems at all with the first one. Then I had my third treatment on Sept 8th. Even though they gave me both Benadryl and steroids up front, I still had the severe back pain about 10 minutes in. It was very upsetting, because I'm thinking "Now, what do we do?". So they stopped it and had a big consultation. The oncologist decided to move on to the Alimta & Carboplatin and then try the Opdivo again afterward. For some reason this worked and I was able to finish the Opdivo afterward with no more pain. But I was told that after two bad reactions it is sometimes recommended to stop that drug & try something else, possibly Keytruda.
My next infusion is this Thursday the 29th (same as yours!). A nurse called last week and told me the oncologist decided he wants to try the Opdivo once again, but this time change the order & do it after the chemo drugs. I don't really understand how that would help, but maybe it's to give more time for the Benadryl and steroids to take effect? I'm pretty sure if I have the reaction again, they will discontinue the Opdivo. 
So now I am now getting quite stressed over this next treatment. If it doesn't work and I have to change to Keytruda, I worry that I might have a similar reaction to that one, too (since I assume the drugs work in a similar manner?). Since I'm not eligible for any targeted therapy drugs, I feel like these are my only hope! This is why I was so disappointed that I did not have one of the "good" mutations.
Also, I had not ever heard that the steroids could have a negative effect on the immunotherapy. That is a little concerning, but I guess if it helps me to take it maybe it is worth it. I will have to ask about that at some point.
I certainly hope the pre-treatment Benadryl works perfectly for you. I think it usually does, as they seemed a bit surprised that it didn't work for me. So you will most likely do fine, and I sincerely wish you the best of luck! Please let us know afterward how it goes. And please cross your fingers for me also  . 
Best to all,
June
 

Hi June! 
 
I’m Rosie, diagnosed with stage 3 squamous cell NSCLC. My oncologist suggested Opdivo and Yervoy for my specific cancer because the cells that make up my tumors are similar to the ones found in melanoma patients. 
 
Similar to your situation, I had my second infusion of Opdivo on Sept. 8th.  Five minutes into the treatment, I also felt the sharp pain on my lower back. I had to request to pause the infusion. The nurse said this was unusual, she said maybe I just needed to adjust my position. She put a pillow behind me and continued my treatment. A few minutes in, and the pain returned, it made me curl on my seat. The doctor on the floor ordered a dose of steroid iv which helped. I decided to finish the treatment. 
 
I did some research and found out this was a common side effect from immunotherapy, particularly Opdivo. I found this on the Mayo Clinic site when I looked up Nivolumab (Opdivo) and back pain was first on the list of common side effects. 
 
For my next infusion on Sept. 29, my oncologist prescribed an IV of Benadryl before my treatment to prevent this. He did not want to give me steroids because it would affect the effectiveness of the immunotherapy.
I hope your next infusion goes well, maybe they’ll give you the same pre-treatment to reduce any side effects. Hopefully our Opdivo treatments work well to rid us of this cancer, that the pain we felt was just a bump on the road to our healing/recovery.

Hi june
Sorry to hear you had a bad time with the chemotherapy I'm glad it got better quickly for you , I had a couple of bad moments while going through it last year but it did get easier, I wish you all the best and goodluck with everything 
Take care Justin x 

I had my 2nd chemo treatment yesterday. It didn't go quite as well as the first but thankfully everything turned out OK.
About 10 minutes into the Opdivo I started having severe lower back pain. It went from nothing to very bad in about 20 seconds! They stopped the drip immediately, then gave me an injection of Benadryl and a big dose of more steroids of some kind, I forget the name. The pain stopped almost immediately. They called the oncologist to see if treatment should continue (he's usually there but just had a baby so had a fill-in today & she wanted to check with him). He wanted to try again ("challenge it" is how they put it) and I was glad of that. I didn't want to have to give up on this drug so soon! So they waited another 30 minutes and started the infusion again with a reduced drip rate. Everyone held their breath to see if the pain returned, but it did not and I did fine. Everything went smoothly after that. What a relief! They said from now on they would start with the Benadryl & use the slower drip rate. It still worries me a bit because the hope was to be on the immunotherapy (Opdivo) for a long time. I wonder if since I already had an issue are there more likely to be problems in the future? Has anyone else has had an experience with this? 
I've also noticed most people on here talk about Keytruda or Imfizi when given immunotherapy. Makes me wonder why they are using a different one for me. Future questions for the oncologist I guess. I do remember him talking about some recent study when we first went over my treatment plan.
Best to all,
June
 
 

I had my 2nd chemo treatment yesterday. It didn't go quite as well as the first but thankfully everything turned out OK.
About 10 minutes into the Opdivo I started having severe lower back pain. It went from nothing to very bad in about 20 seconds! They stopped the drip immediately, then gave me an injection of Benadryl and a big dose of more steroids of some kind, I forget the name. The pain stopped almost immediately. They called the oncologist to see if treatment should continue (he's usually there but just had a baby so had a fill-in today & she wanted to check with him). He wanted to try again ("challenge it" is how they put it) and I was glad of that. I didn't want to have to give up on this drug so soon! So they waited another 30 minutes and started the infusion again with a reduced drip rate. Everyone held their breath to see if the pain returned, but it did not and I did fine. Everything went smoothly after that. What a relief! They said from now on they would start with the Benadryl & use the slower drip rate. It still worries me a bit because the hope was to be on the immunotherapy (Opdivo) for a long time. I wonder if since I already had an issue are there more likely to be problems in the future? Has anyone else has had an experience with this? 
I've also noticed most people on here talk about Keytruda or Imfizi when given immunotherapy. Makes me wonder why they are using a different one for me. Future questions for the oncologist I guess. I do remember him talking about some recent study when we first went over my treatment plan.
Best to all,
June
 
 

Hi Mike,
I hope you are doing well. I don't know if you have had your second treatment yet, but if so I sure hope everything went better than the first. Such a scary situation you experienced!
I had a small problem with my 2nd treatment yesterday and they had to give me an extra dose of steroids. Now, after reading your story, I'm wondering if the steroid crash you experienced is a possibility for me. So I want to thank you for posting about it. If it DOES happen at least I will have an idea of what is going on. That is what is so good about sharing our experiences. 
Thank you and take care. Please give us an update when you can.
June
 

Hi Mike,
I hope you are doing well. I don't know if you have had your second treatment yet, but if so I sure hope everything went better than the first. Such a scary situation you experienced!
I had a small problem with my 2nd treatment yesterday and they had to give me an extra dose of steroids. Now, after reading your story, I'm wondering if the steroid crash you experienced is a possibility for me. So I want to thank you for posting about it. If it DOES happen at least I will have an idea of what is going on. That is what is so good about sharing our experiences. 
Thank you and take care. Please give us an update when you can.
June
 

I had my 2nd chemo treatment yesterday. It didn't go quite as well as the first but thankfully everything turned out OK.
About 10 minutes into the Opdivo I started having severe lower back pain. It went from nothing to very bad in about 20 seconds! They stopped the drip immediately, then gave me an injection of Benadryl and a big dose of more steroids of some kind, I forget the name. The pain stopped almost immediately. They called the oncologist to see if treatment should continue (he's usually there but just had a baby so had a fill-in today & she wanted to check with him). He wanted to try again ("challenge it" is how they put it) and I was glad of that. I didn't want to have to give up on this drug so soon! So they waited another 30 minutes and started the infusion again with a reduced drip rate. Everyone held their breath to see if the pain returned, but it did not and I did fine. Everything went smoothly after that. What a relief! They said from now on they would start with the Benadryl & use the slower drip rate. It still worries me a bit because the hope was to be on the immunotherapy (Opdivo) for a long time. I wonder if since I already had an issue are there more likely to be problems in the future? Has anyone else has had an experience with this? 
I've also noticed most people on here talk about Keytruda or Imfizi when given immunotherapy. Makes me wonder why they are using a different one for me. Future questions for the oncologist I guess. I do remember him talking about some recent study when we first went over my treatment plan.
Best to all,
June
 
 

HI Michelle,
Thank you for the encouraging words. I certainly hope you are right! I have this fear that my treatments won't work for whatever reason. And I don't have any of the targeted mutations, so it worries me to not have that backup line of defense! But I am trying hard to stay positive.
I am very happy for you that everything is going so well! That is certainly encouraging. It's so frustrating when I look back on all the times this thing should have been caught earlier. I'm sure it was for you as well. Over 18 months ago I was complaining to my doctor about loss of stamina on the hiking trails. I was referred to a cardiologist. We did a stress test, echo, etc. and they proclaimed my heart was fine. I had a clear chest x-ray, so no one considered to look any further. I keep wondering why no one ever suggested a simple CT scan? I had no idea that you couldn't always see cancer on a chest x-ray, but surely the doctors knew that. I know I shouldn't worry about what "could have been", but it does bother me a bit. I blame myself, too, for not pushing back more. I sort of convinced myself it was just an age thing. I should have listened to my body, it was trying to tell me!
Hi Chuck,
Thank you also! I actually grew up in Mississippi and still have tons of family there. I'm from up around the Starkville area. But I lived in Gulfport for a few years way back in the 80's as a college co-op student with MS Power. Anyway, I am very glad you are doing well also. There are so many encouraging stories here and it does help a lot to hear them.
Take care all,
June
 

Thank you, Justin and Tom, for your support and for the good advice.

HI Michelle,
Thank you for the encouraging words. I certainly hope you are right! I have this fear that my treatments won't work for whatever reason. And I don't have any of the targeted mutations, so it worries me to not have that backup line of defense! But I am trying hard to stay positive.
I am very happy for you that everything is going so well! That is certainly encouraging. It's so frustrating when I look back on all the times this thing should have been caught earlier. I'm sure it was for you as well. Over 18 months ago I was complaining to my doctor about loss of stamina on the hiking trails. I was referred to a cardiologist. We did a stress test, echo, etc. and they proclaimed my heart was fine. I had a clear chest x-ray, so no one considered to look any further. I keep wondering why no one ever suggested a simple CT scan? I had no idea that you couldn't always see cancer on a chest x-ray, but surely the doctors knew that. I know I shouldn't worry about what "could have been", but it does bother me a bit. I blame myself, too, for not pushing back more. I sort of convinced myself it was just an age thing. I should have listened to my body, it was trying to tell me!
Hi Chuck,
Thank you also! I actually grew up in Mississippi and still have tons of family there. I'm from up around the Starkville area. But I lived in Gulfport for a few years way back in the 80's as a college co-op student with MS Power. Anyway, I am very glad you are doing well also. There are so many encouraging stories here and it does help a lot to hear them.
Take care all,
June
 

HI Michelle,
Thank you for the encouraging words. I certainly hope you are right! I have this fear that my treatments won't work for whatever reason. And I don't have any of the targeted mutations, so it worries me to not have that backup line of defense! But I am trying hard to stay positive.
I am very happy for you that everything is going so well! That is certainly encouraging. It's so frustrating when I look back on all the times this thing should have been caught earlier. I'm sure it was for you as well. Over 18 months ago I was complaining to my doctor about loss of stamina on the hiking trails. I was referred to a cardiologist. We did a stress test, echo, etc. and they proclaimed my heart was fine. I had a clear chest x-ray, so no one considered to look any further. I keep wondering why no one ever suggested a simple CT scan? I had no idea that you couldn't always see cancer on a chest x-ray, but surely the doctors knew that. I know I shouldn't worry about what "could have been", but it does bother me a bit. I blame myself, too, for not pushing back more. I sort of convinced myself it was just an age thing. I should have listened to my body, it was trying to tell me!
Hi Chuck,
Thank you also! I actually grew up in Mississippi and still have tons of family there. I'm from up around the Starkville area. But I lived in Gulfport for a few years way back in the 80's as a college co-op student with MS Power. Anyway, I am very glad you are doing well also. There are so many encouraging stories here and it does help a lot to hear them.
Take care all,
June
 

HI Michelle,
Thank you for the encouraging words. I certainly hope you are right! I have this fear that my treatments won't work for whatever reason. And I don't have any of the targeted mutations, so it worries me to not have that backup line of defense! But I am trying hard to stay positive.
I am very happy for you that everything is going so well! That is certainly encouraging. It's so frustrating when I look back on all the times this thing should have been caught earlier. I'm sure it was for you as well. Over 18 months ago I was complaining to my doctor about loss of stamina on the hiking trails. I was referred to a cardiologist. We did a stress test, echo, etc. and they proclaimed my heart was fine. I had a clear chest x-ray, so no one considered to look any further. I keep wondering why no one ever suggested a simple CT scan? I had no idea that you couldn't always see cancer on a chest x-ray, but surely the doctors knew that. I know I shouldn't worry about what "could have been", but it does bother me a bit. I blame myself, too, for not pushing back more. I sort of convinced myself it was just an age thing. I should have listened to my body, it was trying to tell me!
Hi Chuck,
Thank you also! I actually grew up in Mississippi and still have tons of family there. I'm from up around the Starkville area. But I lived in Gulfport for a few years way back in the 80's as a college co-op student with MS Power. Anyway, I am very glad you are doing well also. There are so many encouraging stories here and it does help a lot to hear them.
Take care all,
June
 

Hi from me too June-
Your story is so similar to mine- I had an undiagnosed cough that went on for months with multiple physicians and treatment plans.  Two chest X-rays, two CTs, before we finally got around to the shocking diagnosis.  We hoped the biopsy would identify a fungal infection.  No one was looking for lung cancer in a competitive athlete who was 51 years old.  
 
In a few weeks I will be celebrating my 55th birthday, a milestone that I didn’t think was possible when I was diagnosed in 2018.  
 
Nothing about this disease is easy but we’re here to say you can do this.  Life will eventually settle into a new normal.  Believe it or not there will be a time when you’ll be able to say you didn’t even think about your cancer.   Brighter days are coming. 
Michelle

Karen, I can see that you are much more into fitness than me - I just love to walk and be in nature. But I love reading about all you are able to do. Maybe there can still be a few adventures left in my future. I love Zion and Bryce - I hope you enjoy your hiking there. Bryce is high elevation though - tough on breathing! We spent a week in Moab this past April. It was wonderful and I will always treasure that trip. So many great hikes in that area. I struggled with breathing on some of them, but assumed it was because of my recent bout with pneumonia. If I had only known! But in a way I'm glad we were able to enjoy that trip without the knowledge of what was lurking in my future.
A week ago Thursday, I had my first infusions. Opdivo/Alimta/Carboplatin. A strange calmness came over me that day. I have to say that from a mental standpoint, that is probably the best day I have had since this whole nightmare began. I think it was purely because we were finally DOING something, instead of all the waiting around and agonizing over different test results, etc. I actually felt better physically that day, too, I assume simply because some action was finally being taken. I think for the first time I became fully aware of just what a devastating effect the anxiety I've been experiencing was having on my body.
The infusions went quite well that day with no ill effects. I felt good on Thursday and Friday. I messed up a bit on the weekend, by waiting a little too long to start taking the Zofran they prescribed. So I got a little behind on the nausea on Saturday and Sunday. I never did throw up, but could not eat so was worried a little about that. But by Monday morning I was feeling much better and by Tuesday all nausea was gone. I will definitely be more proactive with the Zofran next time. But overall I have had a very good week. I am able to eat pretty well and am not having any weird side effects. I do have to admit I feel an overall “strangeness”. It’s hard to describe, but just a little off with some weird head pressure now and then. And of course I get tired very easily. But feeling fortunate so far.  
For now I’m just trying to focus on my treatments and not think too much about the future. That is when the overwhelming sadness hits, so I am choosing to ignore it as much as I can for now. Of course the tears still manage to creep in more than I’d like, but doing the best I can. I know at some point I will have to face it all, but I’m just not ready. I'm starting to think I will eventually need some professional help, not sure I’m strong enough on my own…

Hi June
I was in your shoes about ten months ago my Oncologist told me I was stage 4. Depression and anxiety was consuming me couldn't talk about the cancer without tearing up. I did meet with a therapist a few times but what helps me most is checking out this group daily. Family and friends are there for us but communicating with other people fighting this disease helps me move forward. 
Stay with us
Chuck

June,
There may be some that are strong enough to face a lung cancer diagnosis alone, but in 18-years of hanging around in life after diagnosis, I've not met anyone.
If you think you eventually will need professional help, then it is highly likely you do. Don't wait like I did until I was severely depressed and then enduring depression on top of treatment. 
Stay the course.
Tom

Hi june 
This journey is filled with overwhelming sadness unfortunately, but your not going through it alone,  we're all with you along with your family and we'll all get through this, please try and stay strong take care Justin x 

Karen, I can see that you are much more into fitness than me - I just love to walk and be in nature. But I love reading about all you are able to do. Maybe there can still be a few adventures left in my future. I love Zion and Bryce - I hope you enjoy your hiking there. Bryce is high elevation though - tough on breathing! We spent a week in Moab this past April. It was wonderful and I will always treasure that trip. So many great hikes in that area. I struggled with breathing on some of them, but assumed it was because of my recent bout with pneumonia. If I had only known! But in a way I'm glad we were able to enjoy that trip without the knowledge of what was lurking in my future.
A week ago Thursday, I had my first infusions. Opdivo/Alimta/Carboplatin. A strange calmness came over me that day. I have to say that from a mental standpoint, that is probably the best day I have had since this whole nightmare began. I think it was purely because we were finally DOING something, instead of all the waiting around and agonizing over different test results, etc. I actually felt better physically that day, too, I assume simply because some action was finally being taken. I think for the first time I became fully aware of just what a devastating effect the anxiety I've been experiencing was having on my body.
The infusions went quite well that day with no ill effects. I felt good on Thursday and Friday. I messed up a bit on the weekend, by waiting a little too long to start taking the Zofran they prescribed. So I got a little behind on the nausea on Saturday and Sunday. I never did throw up, but could not eat so was worried a little about that. But by Monday morning I was feeling much better and by Tuesday all nausea was gone. I will definitely be more proactive with the Zofran next time. But overall I have had a very good week. I am able to eat pretty well and am not having any weird side effects. I do have to admit I feel an overall “strangeness”. It’s hard to describe, but just a little off with some weird head pressure now and then. And of course I get tired very easily. But feeling fortunate so far.  
For now I’m just trying to focus on my treatments and not think too much about the future. That is when the overwhelming sadness hits, so I am choosing to ignore it as much as I can for now. Of course the tears still manage to creep in more than I’d like, but doing the best I can. I know at some point I will have to face it all, but I’m just not ready. I'm starting to think I will eventually need some professional help, not sure I’m strong enough on my own…

Karen, I can see that you are much more into fitness than me - I just love to walk and be in nature. But I love reading about all you are able to do. Maybe there can still be a few adventures left in my future. I love Zion and Bryce - I hope you enjoy your hiking there. Bryce is high elevation though - tough on breathing! We spent a week in Moab this past April. It was wonderful and I will always treasure that trip. So many great hikes in that area. I struggled with breathing on some of them, but assumed it was because of my recent bout with pneumonia. If I had only known! But in a way I'm glad we were able to enjoy that trip without the knowledge of what was lurking in my future.
A week ago Thursday, I had my first infusions. Opdivo/Alimta/Carboplatin. A strange calmness came over me that day. I have to say that from a mental standpoint, that is probably the best day I have had since this whole nightmare began. I think it was purely because we were finally DOING something, instead of all the waiting around and agonizing over different test results, etc. I actually felt better physically that day, too, I assume simply because some action was finally being taken. I think for the first time I became fully aware of just what a devastating effect the anxiety I've been experiencing was having on my body.
The infusions went quite well that day with no ill effects. I felt good on Thursday and Friday. I messed up a bit on the weekend, by waiting a little too long to start taking the Zofran they prescribed. So I got a little behind on the nausea on Saturday and Sunday. I never did throw up, but could not eat so was worried a little about that. But by Monday morning I was feeling much better and by Tuesday all nausea was gone. I will definitely be more proactive with the Zofran next time. But overall I have had a very good week. I am able to eat pretty well and am not having any weird side effects. I do have to admit I feel an overall “strangeness”. It’s hard to describe, but just a little off with some weird head pressure now and then. And of course I get tired very easily. But feeling fortunate so far.  
For now I’m just trying to focus on my treatments and not think too much about the future. That is when the overwhelming sadness hits, so I am choosing to ignore it as much as I can for now. Of course the tears still manage to creep in more than I’d like, but doing the best I can. I know at some point I will have to face it all, but I’m just not ready. I'm starting to think I will eventually need some professional help, not sure I’m strong enough on my own…