JuneK

I'm so happy to read your good news Justin! I hope you continue to recover quickly and that you continue to get good news from your team. It is especially good to hear that your spirits are higher, but please don't apologize for feeling down before - we all go through that at times. I will keep you in my thoughts and continue to hope and pray for the best!
Take care - June

Hi Rosie,
I just wanted to check in and see if you have been able to continue with the Opdivo & Yervoy treatments? I hope and pray treatments are going well and will bring you some positive results. I have my 6th Opdivo treatment this Thursday. I don't dread it as much now that we have dropped the chemo, but there is always some anxiety about the possible pain reaction and the worries as to how long the treatments can be tolerated.
Please give us an update when you have the time.
Sending love & prayers - June

Hi Rosie,
I just wanted to check in and see if you have been able to continue with the Opdivo & Yervoy treatments? I hope and pray treatments are going well and will bring you some positive results. I have my 6th Opdivo treatment this Thursday. I don't dread it as much now that we have dropped the chemo, but there is always some anxiety about the possible pain reaction and the worries as to how long the treatments can be tolerated.
Please give us an update when you have the time.
Sending love & prayers - June

I'm so happy to read your good news Justin! I hope you continue to recover quickly and that you continue to get good news from your team. It is especially good to hear that your spirits are higher, but please don't apologize for feeling down before - we all go through that at times. I will keep you in my thoughts and continue to hope and pray for the best!
Take care - June

June - 
It's great to see that doctors are finally taking aggressive steps for stage IV patients. I'm stage IV, diagnosed 6.5 years ago and NED for 4 years. I was fortunate (??) that my biopsy was negative and plans were made for me to have a lobectomy. Super Doc said that had they known I was stage IV, they likely would not have performed the surgery. I feel like I'm the exception, not the rule. Surgery followed by chemo, radiation, and SBRT gave me a fighting chance.
Please ask us anything. We're here to support you.
 
 

Hi everyone 
Sorry I haven't updated yet I wanted to get as much info as possible before I did, I had the procedure done on Friday and it was a great success they got the tumor out and now my right side has come back to life within 3 days I can now move around, the coordination is getting better too, there is some swelling and bleeding but they are really pleased with the results, I have no pain because they only cut through the scalp and skull and not much muscle I had a headache on and off Saturday and Sunday but nothing bad, the dexamethasone steroids are much worse than the operation itself I hate taking them lol, 
They said they will send the tumor away for biopsy tests and see what it actually is but they're pretty sure it is the lung cancer I just hope there is something I can take if or  when it grows back but right now I feel a lot better in myself about it all, I am really sorry I was down last week I feel like I let everyone down and made my family and all of you down with me I try to be supportive and wasn't, 
My friend has just been diagnosed with throat cancer and in his neck, I will support him through this the best way possible, 
I hope everyone is well and thankyou again for all the love and support I really couldn't have done this without you all and my family and friends and my puppy bonnie has been an absolute angel through this journey almost like she was sent from heaven to help me I love her so much and now hopefully can get back to walking her ,
All the best Take care Justin x 

I decided that I needed some help emotionally with all this cancer crap and contacted a therapist who specializes in counseling people with cancer. The therapist had leukemia 9 or 10 years ago and decided to focus her career on helping people with cancer. I am a retired clinical social worker and, of course, thought I knew all the skills. It became clear to me that I haven’t been using these skills - knowing what to do and actually doing that are two different things altogether.  So, I now have someone to keep me accountable. The first thing I realized was that I have been doing a mind f*** by believing everything I think and the second is that I have been giving the negative thoughts way too much weight.  I was so miserable that I was sleeping my afternoons away just to get away from myself. I have a “joy” list and have to do something from that list every day.  My next scan is early December to follow a new nodule. It could just as easily be gone entirely in contrast to my previously held conviction that it was growing, growing, growing. I think a huge blessing about getting cancer is that it helps us learn the power of “letting go” something that we mortals all have to grow towards with or without cancer. And, yes, I still have fear. 

Hi Justin, I am so sorry you are going through this! I don't really know any advice other than please do not give up! Please know we are all sending our prayers and best wishes for you. You mean so much to this forum! I haven't been here all that long, but I really appreciate how you are always there with a kind word of support for everyone. You have really helped people and we all want to help you in return. I wish I knew some way to help, but all I know to do is to let you know I am thinking about you and wishing you all the best to get through this scary bump in your journey. 

Hi everyone,
Thank you so much for all of your messages and support you have given to my Dad during this dreadful time, it's been a difficult time recently, with dad losing his use of his right side, and with the Brain Met aggressively coming back, but Dad you are doing amazingly, you might not think you are, but you honestly are! this forum is to express how you are feeling, its here to help you through Depression, and treatment worries, and to share Cancer journeys. Your not the doom and gloom of this Forum, you've been one hell of a helper to everyone, and everyone knows that, even when you are at your lowest you still think of ways to help others who need your help, the same way everyone on here has helped you. 
You'll never be a burden dad, your ill and you need help.
Dad there going to sort you out a treatment plan, there not going to do nothing, youve reacted to past treatment fantastically! Look at your lung and your lymph nodes, all stable, and 1 Brain Met eradicated, it goes to prove that your stronger than you think, that this cancer can be beat, your beating it now! That one Brain Met will easily be eradicated. 
Once your treatment has been done, i definitely think you need to change Oncologist teams, they've been no good to you at all. This is your life and they have got your life in there hands, and if you don't feel safe and confident in that, then we need to get you transferred, because they've been sloppy, ever since last August. I think the way they have treated you, it certainly comes across as Patient Negligence.
Your my Best Friend dad, always have been, and you always will be, we will get through this Dad, you will get better, we just got to keep fighting for what we deserve, thank you for everything Dad. I love you Dad, always and forever.
Thank you to everyone for there support. 
Take care, many thanks Cody Xx

Hi Justin, I am so sorry you are going through this! I don't really know any advice other than please do not give up! Please know we are all sending our prayers and best wishes for you. You mean so much to this forum! I haven't been here all that long, but I really appreciate how you are always there with a kind word of support for everyone. You have really helped people and we all want to help you in return. I wish I knew some way to help, but all I know to do is to let you know I am thinking about you and wishing you all the best to get through this scary bump in your journey. 

Hi Justin, I am so sorry you are going through this! I don't really know any advice other than please do not give up! Please know we are all sending our prayers and best wishes for you. You mean so much to this forum! I haven't been here all that long, but I really appreciate how you are always there with a kind word of support for everyone. You have really helped people and we all want to help you in return. I wish I knew some way to help, but all I know to do is to let you know I am thinking about you and wishing you all the best to get through this scary bump in your journey. 

Hi Justin, I am so sorry you are going through this! I don't really know any advice other than please do not give up! Please know we are all sending our prayers and best wishes for you. You mean so much to this forum! I haven't been here all that long, but I really appreciate how you are always there with a kind word of support for everyone. You have really helped people and we all want to help you in return. I wish I knew some way to help, but all I know to do is to let you know I am thinking about you and wishing you all the best to get through this scary bump in your journey. 

Hi Justin, I am so sorry you are going through this! I don't really know any advice other than please do not give up! Please know we are all sending our prayers and best wishes for you. You mean so much to this forum! I haven't been here all that long, but I really appreciate how you are always there with a kind word of support for everyone. You have really helped people and we all want to help you in return. I wish I knew some way to help, but all I know to do is to let you know I am thinking about you and wishing you all the best to get through this scary bump in your journey. 

So happy to hear your awesome news, Karen! Looks like we both had a good week! 

Hi Rosie, good to hear from you. How did your treatment go yesterday? I sincerely hope all went well.
It was the strangest thing yesterday with my Opdivo treatment - I never got any pain at all this time! This, after 3 treatments in a row where the pain hit like clockwork. I am truly having the luckiest week ever. The only thing I did differently, was this time I chose one of the heated chairs. I turned the back heat up as far as it would go and got my back really warm. Then when treatment started, I closed my eyes and pretended I was lying on a beach somewhere with the sun warming my back. I really zoned out and almost felt like I was there! I have no idea if this helped at all or if it was just a coincidence, but I plan on doing this again next time, just in case. The way our bodies work is the strangest thing sometimes.
Best to all,
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

So happy for your good news June.

Hi Rosie, good to hear from you. How did your treatment go yesterday? I sincerely hope all went well.
It was the strangest thing yesterday with my Opdivo treatment - I never got any pain at all this time! This, after 3 treatments in a row where the pain hit like clockwork. I am truly having the luckiest week ever. The only thing I did differently, was this time I chose one of the heated chairs. I turned the back heat up as far as it would go and got my back really warm. Then when treatment started, I closed my eyes and pretended I was lying on a beach somewhere with the sun warming my back. I really zoned out and almost felt like I was there! I have no idea if this helped at all or if it was just a coincidence, but I plan on doing this again next time, just in case. The way our bodies work is the strangest thing sometimes.
Best to all,
June

Hi Rosie, good to hear from you. How did your treatment go yesterday? I sincerely hope all went well.
It was the strangest thing yesterday with my Opdivo treatment - I never got any pain at all this time! This, after 3 treatments in a row where the pain hit like clockwork. I am truly having the luckiest week ever. The only thing I did differently, was this time I chose one of the heated chairs. I turned the back heat up as far as it would go and got my back really warm. Then when treatment started, I closed my eyes and pretended I was lying on a beach somewhere with the sun warming my back. I really zoned out and almost felt like I was there! I have no idea if this helped at all or if it was just a coincidence, but I plan on doing this again next time, just in case. The way our bodies work is the strangest thing sometimes.
Best to all,
June

That is great news! What a scare, though. I'm so glad everything turned out OK!

Hi Rosie, good to hear from you. How did your treatment go yesterday? I sincerely hope all went well.
It was the strangest thing yesterday with my Opdivo treatment - I never got any pain at all this time! This, after 3 treatments in a row where the pain hit like clockwork. I am truly having the luckiest week ever. The only thing I did differently, was this time I chose one of the heated chairs. I turned the back heat up as far as it would go and got my back really warm. Then when treatment started, I closed my eyes and pretended I was lying on a beach somewhere with the sun warming my back. I really zoned out and almost felt like I was there! I have no idea if this helped at all or if it was just a coincidence, but I plan on doing this again next time, just in case. The way our bodies work is the strangest thing sometimes.
Best to all,
June

That is great news! What a scare, though. I'm so glad everything turned out OK!

Karen,
Wow! This is superb news. Of course, you might know I am a big fan of precision radiation and am so happy your treatment blasted those troubling mets.
I don't think any of us has a complete picture on immunotherapy treatment, especially duration of treatment. I've heard there is an emerging standard that suggests 2 years of therapy, then screening. Missing when discussing duration is the fact that immunotherapy works and many late stage lung cancer survivors are leading productive lives because of this treatment. My radiation scarring cleared up and yours will likely clear also.
Stay the course.
Tom

So happy to hear your awesome news, Karen! Looks like we both had a good week! 

Hi June,
Thank you for your updates, I’m so glad your scans came out with really positive results! It’s good news that even through the painful side effects of Opdivo, your chemo combo treatment works. 
 
I’m going in for my 4th treatment of Opdivo tomorrow morning.  And even though I know I will be feeling some pain as a side effect, I’m not as fearful ‘cause there are people like you for whom the treatment works, as well as the many survivors and their stories.  It encourages me to focus on the big picture, hoping there’s a treatment that’ll work for me too. 
 
Wishing you wellness,
Rosie