JuneK

My mum went to a pulmonologist and oncologist in Poland about her scan and he said that everything is ok and that there's nothing in the left lung (the radiologist made a mistake about which lung it was) and in the right lung there's scarring from the radiotherapy which is normal and my mum's oncologist back at home mentioned she had scarring from the radiotherapy anyway. Such a relief! So there's no need for my mum to have a CT scan right away and she can wait until her scheduled monitoring routine CT scan at the end of November. 

I had my 3-month MRI this past Monday and saw the onc. radiologist today. There's nothing new to report-- YAY! The ring around the lesion they zapped is fading & breaking up. The little spots they are watching are so small they have a hard time finding them, but the head of the gamma knife program and my radiologist think they're probably just blood vessels. 
My pulse ox was 99! 
The conversation with her is always interesting. She says I've had a superb response to chemo rads and immunotherapy. But, I said, I had barely 25% of the protocol treatment for immunotherapy (Pacific Study.) She said they aren't terribly clear about how much immunotherapy it really takes to jumpstart the immune system. And, she also said she suspected the brain had already been seeded prior to any treatment. But, I said, it's my understanding that EGFR mutated lung cancer doesn't respond to immunotherapy. No, she said, according to Pacific Study treatment protocols, EGFR-positive patients had no difference in response than patients with non-EGFR mutated lung cancers. Which doesn't give you a complete picture because she didn't put her statement in context of total results, but it sounds nice. 
She also took a look at my most recent CT scans of the lungs The only thing to see is ongoing scarring from treatment and pneumonitis, and that may disappear or maybe it won't. 
Pretty amazing, right? I am feeling very, very grateful. 
 
 

@Strongmamaof3My chemo drugs were Carboplatin and Alimta. Yes, I don't know how they come up with all these different combos. I remember my oncologist referring to a specific study when he initially told me my treatment plan. I had a mutation for KRAS, but it was NOT the one they now have a targeted therapy for. There was another mutation I had never heard of, and I honestly can't remember the name right now. All I remember was that neither one was treatable with targeted drugs.

Hi @Strongmamaof3 and welcome. I am a non smoker also. It's surprising to me how many of us non smokers with lung cancer there are! I'm so sorry your first line of treatment did not work. That really sucks.
I would try not to be too worried about the Opdivo. My oncologist told me that Keytruda and Opdivo are similar in the way they work. So I'm guessing if you did OK with Keytruda, then hopefully you won't have any problems with the Opdivo. But of course, I'm not a doctor, so I really don't know.
I have my next Opdivo treatment this Thursday. At this point I am resigned to the initial back pain. I'm just hoping our method of stopping & waiting it out continues to work. It does make for a stressful infusion though, because I'm always worrying the pain might start back up at any moment. I will definitely keep you posted as to how it goes. Hopefully Rosie will let us know how hers goes also.
As for scans, I had my first PET scan yesterday (since treatment began). It was after completing 4 cycles of chemo & Opdivo. I forgot to ask how long it would be before I could do another one. Luckily, my lung tumor and the spot on my hip were both reduced in size, so I'm feeling very fortunate about that.
I hope and pray your next phase of treatment finds success! Please keep us posted. Wishing you all the best.
June

Hi Rosie,
I'm sorry you are still having the pain also. Your "feeling of things closing in and getting dark" sounds very scary to me! I hope you told them about that. They've been stopping my treatment as soon as I get the first twinge of pain, so I haven't experienced anything like that. For some reason, when they wait a few minutes and start it back up, the pain has (so far) not returned. I don't understand it and it makes for a very stressful infusion, as you well know.
I have my Pet scan tomorrow. I am really nervous about it. I have this dreaded feeling that nothing has been working! I'm trying my best to put it out of my mind, with limited success.
Wishing you the best on your next Opdivo treatment. I hope you can get through it pain-free! Great to know you only have one more. If the Opdivo is helping me, my oncologist wants me to take it for 2 years if I can tolerate it. (I am stage 4, so I guess that's why) 
All the best,
June
 

Hi Rosie,
We are definitely in the same boat with this for sure! I do hope & pray that you had no further problems and were able to finish your treatment.
The pain came back for me today also. But I was able to complete the infusion so we have agreed that for now we can "manage" it. We knew the last two times the pain hit me right at the 10 to 11 minute mark. So we were ready! As soon as I got the first twinges they stopped it immediately. The pain did increase a bit after stoppage, but not nearly as bad as the last two times when I waited until the pain was stronger to get them to stop it. So they monitored my vital signs while we waited for the pain to subside. They had already given me the steroids and Benadryl before starting. Once the pain was completely gone, they restarted the drip (with emergency kit at the ready just in case something worse happened). But just like the last two times, the pain never returned so I was able to finish it. I don't understand why it works this way, but it has been very consistent. So we have all agreed to continue doing it this way, being very careful, as long as we can. If more problems develop down the road he will switch to one of the other immunotherapy drugs and just hope I can tolerate one of those better. So for now I am feeling a little bit better about it.
I have a scan on October 17th to determine if any of this is even working! There will be some high anxiety that week!
I'm praying we both get through this Opdivo challenge with minimal further problems!
Best to you,
June
 
 
 
 
 

Thank you, Tom! Your vote of confidence in my physicians is very encouraging and means a lot to me. There are so many treatment options out there that I am always wondering if we are doing the right thing. I never had any idea how complicated cancer & cancer treatments were until now!
The phone thing is not a big deal. I mostly found it odd that some parts of the forum seem to be missing.

Thank you both! And thanks LouT for the link to the surgery tips. Time to start educating myself on that!
I've noticed when I access this site with my phone, I cannot see this topic, Member Updates. Does anyone know why? Or how I can see it on my phone? Thanks in advance.
June

I had my first PET Scan yesterday since beginning my treatments (4 cycles of Carboplatin, Alimta and Opdivo). I received some pretty good results this afternoon. The main tumor shrank from 3.4 x 3 cm down to 1.9 x 1.7 cm. The SUV (activity level) went from 20.6 down to 12.7. The hip spot is harder to measure because of scar tissue, but the SUV there went from 9.3 to 1.9. I can’t tell you how relieved I am that things seem to be going in the right direction. Feeling much more hopeful today!
I now have an appointment on the 28th with a thoracic surgeon. I am frankly surprised that they are considering a lobectomy since I am Stage 4. But my oncologist explained that I am what he calls Stage 4 “with an asterisk”. Since it is not in any of the lymph nodes in the middle of my chest, and is only in one other spot, the small hip lesion, they want to be aggressive and think that a lobectomy will give me the best chance. I myself, like this aggressive approach. Could there be any down side to it?
He also recommended a radiologist to meet with to plan for doing radiation treatments on the hip. This would be done after the surgery though.
I will continue monthly infusions of Opdivo, as long as I can tolerate it (up to two years). Might have to switch at some point though, since I’ve already been having a reaction to it. We’re hoping to keep it manageable as long as possible.
All in all, I'm feeling very thankful tonight. I know I still have a long way to go, but at least things seem to be going in the right direction for now.
Thanks to everyone for your support and encouragement! And especially for your messages of HOPE! 
June

Hi Rosie,
I'm sorry you are still having the pain also. Your "feeling of things closing in and getting dark" sounds very scary to me! I hope you told them about that. They've been stopping my treatment as soon as I get the first twinge of pain, so I haven't experienced anything like that. For some reason, when they wait a few minutes and start it back up, the pain has (so far) not returned. I don't understand it and it makes for a very stressful infusion, as you well know.
I have my Pet scan tomorrow. I am really nervous about it. I have this dreaded feeling that nothing has been working! I'm trying my best to put it out of my mind, with limited success.
Wishing you the best on your next Opdivo treatment. I hope you can get through it pain-free! Great to know you only have one more. If the Opdivo is helping me, my oncologist wants me to take it for 2 years if I can tolerate it. (I am stage 4, so I guess that's why) 
All the best,
June
 

I had my first PET Scan yesterday since beginning my treatments (4 cycles of Carboplatin, Alimta and Opdivo). I received some pretty good results this afternoon. The main tumor shrank from 3.4 x 3 cm down to 1.9 x 1.7 cm. The SUV (activity level) went from 20.6 down to 12.7. The hip spot is harder to measure because of scar tissue, but the SUV there went from 9.3 to 1.9. I can’t tell you how relieved I am that things seem to be going in the right direction. Feeling much more hopeful today!
I now have an appointment on the 28th with a thoracic surgeon. I am frankly surprised that they are considering a lobectomy since I am Stage 4. But my oncologist explained that I am what he calls Stage 4 “with an asterisk”. Since it is not in any of the lymph nodes in the middle of my chest, and is only in one other spot, the small hip lesion, they want to be aggressive and think that a lobectomy will give me the best chance. I myself, like this aggressive approach. Could there be any down side to it?
He also recommended a radiologist to meet with to plan for doing radiation treatments on the hip. This would be done after the surgery though.
I will continue monthly infusions of Opdivo, as long as I can tolerate it (up to two years). Might have to switch at some point though, since I’ve already been having a reaction to it. We’re hoping to keep it manageable as long as possible.
All in all, I'm feeling very thankful tonight. I know I still have a long way to go, but at least things seem to be going in the right direction for now.
Thanks to everyone for your support and encouragement! And especially for your messages of HOPE! 
June

I had my first PET Scan yesterday since beginning my treatments (4 cycles of Carboplatin, Alimta and Opdivo). I received some pretty good results this afternoon. The main tumor shrank from 3.4 x 3 cm down to 1.9 x 1.7 cm. The SUV (activity level) went from 20.6 down to 12.7. The hip spot is harder to measure because of scar tissue, but the SUV there went from 9.3 to 1.9. I can’t tell you how relieved I am that things seem to be going in the right direction. Feeling much more hopeful today!
I now have an appointment on the 28th with a thoracic surgeon. I am frankly surprised that they are considering a lobectomy since I am Stage 4. But my oncologist explained that I am what he calls Stage 4 “with an asterisk”. Since it is not in any of the lymph nodes in the middle of my chest, and is only in one other spot, the small hip lesion, they want to be aggressive and think that a lobectomy will give me the best chance. I myself, like this aggressive approach. Could there be any down side to it?
He also recommended a radiologist to meet with to plan for doing radiation treatments on the hip. This would be done after the surgery though.
I will continue monthly infusions of Opdivo, as long as I can tolerate it (up to two years). Might have to switch at some point though, since I’ve already been having a reaction to it. We’re hoping to keep it manageable as long as possible.
All in all, I'm feeling very thankful tonight. I know I still have a long way to go, but at least things seem to be going in the right direction for now.
Thanks to everyone for your support and encouragement! And especially for your messages of HOPE! 
June

Thank you, Tom! Your vote of confidence in my physicians is very encouraging and means a lot to me. There are so many treatment options out there that I am always wondering if we are doing the right thing. I never had any idea how complicated cancer & cancer treatments were until now!
The phone thing is not a big deal. I mostly found it odd that some parts of the forum seem to be missing.

Thank you both! And thanks LouT for the link to the surgery tips. Time to start educating myself on that!
I've noticed when I access this site with my phone, I cannot see this topic, Member Updates. Does anyone know why? Or how I can see it on my phone? Thanks in advance.
June

June,
Your PET results are indeed grand good news! SUV declines are dramatic so your combination chemo is working.
Kudos to your physicians for their aggressive approach. The spot on your hip can be zapped with precision radiation and taken off the table. Your sole lung tumor can be resected. You have a real chance of going from Stage IV to NED! Thank goodness you've got physicians that recognize your individual circumstances and have the courage to step away from a standard of care to give you a real shot at NED.
Assuming you have your surgery and precision radiation, continued treatment with Opdivo is prudent. Lung cancer is so dangerous because it recurs often after "successful" treatment and Opdivo, systemic therapy, will keep attacking stray cancer cells in your blood stream and lymphatic systems before they settle down and form a nodule or tumor.
I can't offer assistance on using our Forum from your phone. My fingers are way too fat and my eyes are too dim to do much more than answer a phone call. Often I screw that up.
Stay the course.
Tom

I had my first PET Scan yesterday since beginning my treatments (4 cycles of Carboplatin, Alimta and Opdivo). I received some pretty good results this afternoon. The main tumor shrank from 3.4 x 3 cm down to 1.9 x 1.7 cm. The SUV (activity level) went from 20.6 down to 12.7. The hip spot is harder to measure because of scar tissue, but the SUV there went from 9.3 to 1.9. I can’t tell you how relieved I am that things seem to be going in the right direction. Feeling much more hopeful today!
I now have an appointment on the 28th with a thoracic surgeon. I am frankly surprised that they are considering a lobectomy since I am Stage 4. But my oncologist explained that I am what he calls Stage 4 “with an asterisk”. Since it is not in any of the lymph nodes in the middle of my chest, and is only in one other spot, the small hip lesion, they want to be aggressive and think that a lobectomy will give me the best chance. I myself, like this aggressive approach. Could there be any down side to it?
He also recommended a radiologist to meet with to plan for doing radiation treatments on the hip. This would be done after the surgery though.
I will continue monthly infusions of Opdivo, as long as I can tolerate it (up to two years). Might have to switch at some point though, since I’ve already been having a reaction to it. We’re hoping to keep it manageable as long as possible.
All in all, I'm feeling very thankful tonight. I know I still have a long way to go, but at least things seem to be going in the right direction for now.
Thanks to everyone for your support and encouragement! And especially for your messages of HOPE! 
June

@Strongmamaof3My chemo drugs were Carboplatin and Alimta. Yes, I don't know how they come up with all these different combos. I remember my oncologist referring to a specific study when he initially told me my treatment plan. I had a mutation for KRAS, but it was NOT the one they now have a targeted therapy for. There was another mutation I had never heard of, and I honestly can't remember the name right now. All I remember was that neither one was treatable with targeted drugs.

Hi @Strongmamaof3 and welcome. I am a non smoker also. It's surprising to me how many of us non smokers with lung cancer there are! I'm so sorry your first line of treatment did not work. That really sucks.
I would try not to be too worried about the Opdivo. My oncologist told me that Keytruda and Opdivo are similar in the way they work. So I'm guessing if you did OK with Keytruda, then hopefully you won't have any problems with the Opdivo. But of course, I'm not a doctor, so I really don't know.
I have my next Opdivo treatment this Thursday. At this point I am resigned to the initial back pain. I'm just hoping our method of stopping & waiting it out continues to work. It does make for a stressful infusion though, because I'm always worrying the pain might start back up at any moment. I will definitely keep you posted as to how it goes. Hopefully Rosie will let us know how hers goes also.
As for scans, I had my first PET scan yesterday (since treatment began). It was after completing 4 cycles of chemo & Opdivo. I forgot to ask how long it would be before I could do another one. Luckily, my lung tumor and the spot on my hip were both reduced in size, so I'm feeling very fortunate about that.
I hope and pray your next phase of treatment finds success! Please keep us posted. Wishing you all the best.
June

JuneK,
I love the asterisk...and this is hopeful news.  I look forward to hearing about a successful surgery in your future updates.  In the meantime there is good information on "Thoracic SurgeryTips and Tricks" (read lobectomy) that will help you to prepare for, go through, and recover from the surgery.  That can be found here.  Let us know if you have any questions on the surgery, there is a lot of experience here that you can count on.
Lou

WOW. I love your new staging result: "Stage 4 with an asterisk"
Congratulations on having a care team that is going all Rambo on the stupid cancer. Can't wait to hear what happens next.

I had my first PET Scan yesterday since beginning my treatments (4 cycles of Carboplatin, Alimta and Opdivo). I received some pretty good results this afternoon. The main tumor shrank from 3.4 x 3 cm down to 1.9 x 1.7 cm. The SUV (activity level) went from 20.6 down to 12.7. The hip spot is harder to measure because of scar tissue, but the SUV there went from 9.3 to 1.9. I can’t tell you how relieved I am that things seem to be going in the right direction. Feeling much more hopeful today!
I now have an appointment on the 28th with a thoracic surgeon. I am frankly surprised that they are considering a lobectomy since I am Stage 4. But my oncologist explained that I am what he calls Stage 4 “with an asterisk”. Since it is not in any of the lymph nodes in the middle of my chest, and is only in one other spot, the small hip lesion, they want to be aggressive and think that a lobectomy will give me the best chance. I myself, like this aggressive approach. Could there be any down side to it?
He also recommended a radiologist to meet with to plan for doing radiation treatments on the hip. This would be done after the surgery though.
I will continue monthly infusions of Opdivo, as long as I can tolerate it (up to two years). Might have to switch at some point though, since I’ve already been having a reaction to it. We’re hoping to keep it manageable as long as possible.
All in all, I'm feeling very thankful tonight. I know I still have a long way to go, but at least things seem to be going in the right direction for now.
Thanks to everyone for your support and encouragement! And especially for your messages of HOPE! 
June

Hi Rosie,
I'm sorry you are still having the pain also. Your "feeling of things closing in and getting dark" sounds very scary to me! I hope you told them about that. They've been stopping my treatment as soon as I get the first twinge of pain, so I haven't experienced anything like that. For some reason, when they wait a few minutes and start it back up, the pain has (so far) not returned. I don't understand it and it makes for a very stressful infusion, as you well know.
I have my Pet scan tomorrow. I am really nervous about it. I have this dreaded feeling that nothing has been working! I'm trying my best to put it out of my mind, with limited success.
Wishing you the best on your next Opdivo treatment. I hope you can get through it pain-free! Great to know you only have one more. If the Opdivo is helping me, my oncologist wants me to take it for 2 years if I can tolerate it. (I am stage 4, so I guess that's why) 
All the best,
June
 

Guys!
I have great news! Today will be my last chemo!! After today, I will just be on keytruda :). I’m so thankful for everything and the support I’ve received from everyone here. The fight isn’t over but it seems like the light at the end of the tunnel is approaching me.
Maintaining a good attitude and just living life day to day like it doesn’t exist is truly the key to fighting this. Everyone else that’s fighting, just keep pushing and you’ll make it! Believe me, god works miracles to those who go through his trials in life. 
 
Ale 🤍

Hi Rosie,
We are definitely in the same boat with this for sure! I do hope & pray that you had no further problems and were able to finish your treatment.
The pain came back for me today also. But I was able to complete the infusion so we have agreed that for now we can "manage" it. We knew the last two times the pain hit me right at the 10 to 11 minute mark. So we were ready! As soon as I got the first twinges they stopped it immediately. The pain did increase a bit after stoppage, but not nearly as bad as the last two times when I waited until the pain was stronger to get them to stop it. So they monitored my vital signs while we waited for the pain to subside. They had already given me the steroids and Benadryl before starting. Once the pain was completely gone, they restarted the drip (with emergency kit at the ready just in case something worse happened). But just like the last two times, the pain never returned so I was able to finish it. I don't understand why it works this way, but it has been very consistent. So we have all agreed to continue doing it this way, being very careful, as long as we can. If more problems develop down the road he will switch to one of the other immunotherapy drugs and just hope I can tolerate one of those better. So for now I am feeling a little bit better about it.
I have a scan on October 17th to determine if any of this is even working! There will be some high anxiety that week!
I'm praying we both get through this Opdivo challenge with minimal further problems!
Best to you,
June
 
 
 
 
 

Hi Rosie,
We are definitely in the same boat with this for sure! I do hope & pray that you had no further problems and were able to finish your treatment.
The pain came back for me today also. But I was able to complete the infusion so we have agreed that for now we can "manage" it. We knew the last two times the pain hit me right at the 10 to 11 minute mark. So we were ready! As soon as I got the first twinges they stopped it immediately. The pain did increase a bit after stoppage, but not nearly as bad as the last two times when I waited until the pain was stronger to get them to stop it. So they monitored my vital signs while we waited for the pain to subside. They had already given me the steroids and Benadryl before starting. Once the pain was completely gone, they restarted the drip (with emergency kit at the ready just in case something worse happened). But just like the last two times, the pain never returned so I was able to finish it. I don't understand why it works this way, but it has been very consistent. So we have all agreed to continue doing it this way, being very careful, as long as we can. If more problems develop down the road he will switch to one of the other immunotherapy drugs and just hope I can tolerate one of those better. So for now I am feeling a little bit better about it.
I have a scan on October 17th to determine if any of this is even working! There will be some high anxiety that week!
I'm praying we both get through this Opdivo challenge with minimal further problems!
Best to you,
June