Steff

Brace yourselves... Dawn's PET scan showed 100% remission in her lymph nodes, 50% shrinkage in her lungs and sacral tumors. We are winning.

Anna,
If you and your husband are wanting to pursue the surgery option, I suggest a second opinion. My mom has similar health issues and her surgeon did not even blink at the idea of a lobectomy. And she did fine with the surgery.
In most cases, you can start the 1st recommended treatment while you await a second opinion,  but you will want to double check with the docs.
I  assume your husband had a biopsy??? If so, was his cancer tested for any mutations or other biomarkers? Some immunotherapies are now considered to be first line treatment for those who meet the criteria.

Anna,
If you and your husband are wanting to pursue the surgery option, I suggest a second opinion. My mom has similar health issues and her surgeon did not even blink at the idea of a lobectomy. And she did fine with the surgery.
In most cases, you can start the 1st recommended treatment while you await a second opinion,  but you will want to double check with the docs.
I  assume your husband had a biopsy??? If so, was his cancer tested for any mutations or other biomarkers? Some immunotherapies are now considered to be first line treatment for those who meet the criteria.

Anna,
If you and your husband are wanting to pursue the surgery option, I suggest a second opinion. My mom has similar health issues and her surgeon did not even blink at the idea of a lobectomy. And she did fine with the surgery.
In most cases, you can start the 1st recommended treatment while you await a second opinion,  but you will want to double check with the docs.
I  assume your husband had a biopsy??? If so, was his cancer tested for any mutations or other biomarkers? Some immunotherapies are now considered to be first line treatment for those who meet the criteria.

Hi Jane,
I am sorry to hear that you and your husband are having to travel along the scary journey called lung cancer.  I too, am a caregiver - for my mother with a recurrence of lung cancer.  She is currently on chemo and Keytruda.  I know how you are feeling and many others on these forums do as well.  I reached out to this group a few months ago and they have been a great help, both for increased knowledge and hope.  There are many survivors on here as well.
Please know that you and your husband are not alone in this - we are here for you.  This site is not only helpful with all the discussion forums, there is also a great amount of information about the different kinds of lung cancers and treatments that are easy to read and understand.  Is there any specific help/support you are looking for?
Thinking of you,
Steff

I'm honored to have been asked to become a moderator for LCSC.  I'm a survivor of 3 primary cancers. I  had a Stage 1 breast cancer in 2008 with a lunpectomy and radiation. Then in 2011, a Stage 3 cervical cancer, a  rare and aggressive type of cervical. I had  a radical surgery, then concurrent chemo and radiation and additional chemo. I had a long recovery with a lot of late occurring treatment side effects, some of which are permanent. During a routine surveillance CT scan for that cancer, a nodule was found in my right lung. In November last year I had a right lower lobectomy, and was diagnosed, as Lauren said, with stage 1 adenocarcinoma, KRAS mutation. I'm now NED on all 3 cancers. Whoo! 
I've learned a lot about lung cancer in the last year, much of it from the Lungevity website and this forum. And I've really appreciated the support and hope I've gotten  from forum members. I've been in a gynecologic cancer support group here in Portland, which has been great. I was hoping to find a lung cancer support group here, but surprisingly for a big city with a big cancer center, there doesn't seem to be one. So this forum has been especially important to me. 
About me: I'm 72 years old. I was a case manager working mostly with adults with intellectual and developmental disabilities. I retired, sort of, at age 57. Since t then, I've been working at a variety of jobs, when not traveling or having cancer treatment. I spent a year teaching English in Poland. I've worked both as a volunteer and paid staff  with homeless and recently homeless people. Most recently, I was back working part time as a case manager. I decided to "retire" again a year ago when I began having tests for what turned out to be lung cancer.  I travel when opportunities arise, and I'm always looking for opportunities. I just got back from a women's cancer retreat in Montana. No trips planned right now, but I'm looking for something for spring. I read a lot, do water aerobics 2 or 3 times a week, walk usually daily, do beadwork, and volunteer with a  non-profit group for tree-related activities such as pruning small trees. I'm a member of my Neighborhood Emergency Team (NET, these are called CERTs in most parts of the country.) and I'm working with neighbors on my block to prepare for disasters- the most likely one in Portland is a devastating earthquake. It would be as bad as one of the big hurricanes and maybe worse since there would be no warning. So, as you can see I'm busy. I'm determined not to waste my "rare and precious life" ( I think that's from a poem by Mary Oliver), but to do things that I love and that have meaning to me. I try not to worry about the cancers, but of course I do anyway,  Generally, I am able not to use up too much energy on worrying.
So, Forum folks, please post often. I love to hear what's going on with you and to learn from  all of you.  
Bridget O

Went to my cancer dr yesterday for results of latest CT Scan and breathing tests - breathing in great- breathing out - not so great - CT Scan - only thing left is a scar!  Now I wait five years before I can say "Cancer Free"
 

Fabulous news Tom!  Your continued good news gives us all continued hope!

Happy dance!! Great news!!!

JephKay,
Your question is a good one and quite valid.  My mom is on Keytruda + Chemo for a recurrence of NSCLC.  She's completed her 3rd dose.  I've learned quite a bit along the way, but your wife's situation may be a bit different since it sounds like she is receiving Keytruda as a first line of treatment.  Like Tom said, using Keytruda as a first line treatment is fairly new.  Research shows that Keytruda is usually less harsh on the person and often times more effective than chemo.  The fact that your wife has 100% PDl-1 expression gives her a really great chance that Keytruda will work. Should Keytruda not work for my mom, she will have the traditional methods of treatment available to her - Chemo + radiation.  I would imagine your wife will be no different in that there will be another treatment option available for her - possibly the traditional chemo and radiation.  But with the quick advancements of new lung cancer treatments, there may be an entirely new treatment option if/when Keytruda stops working for your wife.
 
 
 

My first 5k, post surgery. Felt great, scared, nervous, excited all at the same time.Didn't do too shabby, Finished 10th out of 26 in my age group. Main goal was to start upright and finish upright. Love this race, cheerleaders at the start and finish line. Time 49:07 for a pace of 15:51, so happy. I am in the white shirt headed for the finish line. Thanks to everyone for the kind words of support.

Fabulous news Tom!  Your continued good news gives us all continued hope!

Fabulous news Tom!  Your continued good news gives us all continued hope!

I had my annual CT scan with contrast on August 22nd and my consultation with my medical oncologist today (Aug 28th), and the result: clean scans and continued NED.
Yes I am a long tenured survivor but during today's consultation we spoke of how persistent lung cancer is.  Moreover, I learned that one cancer diagnosis often begets another.  So there is good reason for me to keep the twice yearly oncology consultations and the annual CT.
We also spend a lot of time reminiscing my time in active treatment.  Doc has a superb memory and he filled in my gaps and provided additional insight into how and why he suggested stereotactic radiation after my third line chemotherapy failure.  We also discussed the radio oncologist's aggressive treatment of Stage IV tumors in multiple locations of the body using SBRT and IMRT techniques.  This new approach is moving the survival needle for late stage diagnosed survivors to the right! 
So I'm celebrating clean scans and declare an end to scanziety for 11 months!
Stay the course.
Tom

Hi all-
Sorry it's been so long since I posted. Since my original posting I had two biopsies, one of the armpit/breast area and another of my lung. Luckily they both came back normal! I was so relieved to find this out. My oncologist says I am now in maintenance/monitoring scanning. Since I found this out I have been very busy spending time with family and friends, going back to a "normal" lifestyle. Now I just need to focus on building up my lung function so I can get back to an active lifestyle again. Thanks all for your thoughts and posts, it means a lot to know there's a community out there to turn to. I hope others are having luck and getting some good news as well!

I know I've not posted in a while. Thought I'd let some time pass and see how I felt about sharing.
Dawn had an MRI yesterday. The tumors in her brain have nearly vanished. Her doctor suggests that the shadows we see may be dead cancer cells that haven't been washed away just yet. Next up is a CT scan to look into the cancers in her lungs, lymph nodes and sacrum.
My baby is going to be okay.

They called today with the results of my PET Scan and said they believe the nodule is benign. 

Hello again, its been a while since I have been here. Just wanted to let the great folks here on Lungevity know I am recovering about as normal as possible after the removal of my upper right lobe surgery on May 18th. Hey! exactly 3 months to the day. The pain in the chest and back are pretty much healed, still have the daily zingers, which I understand are normal, but other than that life is good.  For those who might be having some  of the normal worries and concerns facing a lung surgery, I will be honest its not a walk in the park, but it is very much doable. Mine was open surgery and I was blessed with clear margins and no other sign of Mets at all, and with the Lords grace no chemo or radiation needed at this time. My first 3 month doctors visit is coming up the first of September and I CAN NOT tell  a lie I am pretty nervous. But praying that all will go well, and NED will be my new motto. I will keep everyone here in my thoughts and prayers as well, and those who feel as though this might be to much to bare, don't try to take on this trial on your own, ask the Lord for his help. Understanding Grace is the key. We do all we can with adversity, we do our part, and he will make up the difference. Wish you all well, I will let you know the out come of my up coming procedure.
 JWH... 
 
 
 
 
 
 
 
 
 
 
 
 
 

Hi there,
I am happy that your mom is allowing you to go with her to the doctor.  One important question to ask is if more than 50% of her cancer cells test positive for PD-L1.  If so, Keytruda has become the recommended 1st line treatment for NSCLC with PD-L1 mutation, at least for early stages.  Perhaps the doc is waiting to see how she responds to Keytruda before making a suggestion for lobectomy.  Another question would be why only Keytruda and not Keytruda and Chemo together for the first 8 sessions - the latter increases the effectiveness of the overall treatment.  And as Pegi said, there are no dumb questions and be sure to take a notebook to write everything down. 
I used these lists of questions to give me ideas of other questions to ask (there is a tab specifically for immunotherapy) https://www.lungevity.org/for-patients-caregivers/asking-right-questions/questions
When my mom was initially told her cancer recurrence was inoperable and that she would be treated with Keytruda/Chemo, she felt she was just buying time. Her ocologist (which doesn't have the most compassion) said that she was indeed buying time. But she would be buying months and maybe even years.  I personally do not feel you are giving your mom false hope.  The more I study Keytruda and see the amazing help it is giving people (including a relative that has used it for the past 2 years for advanced stage melanoma), it is easier to feel optimistic.  The fact that your mom is already healthy is good for her.  I also feel that when we believe something, it can either help us or hinder us.  Helping her to get over the idea that she has a 2 year expiration date may help her health-wise in the long-term.
I'm so very sorry you are having to travel on this journey with your mom.  No matter how old we are, it's still our momma who is sick and fighting for her life - it's not easy.  Take Care
 

Hi there,
I am happy that your mom is allowing you to go with her to the doctor.  One important question to ask is if more than 50% of her cancer cells test positive for PD-L1.  If so, Keytruda has become the recommended 1st line treatment for NSCLC with PD-L1 mutation, at least for early stages.  Perhaps the doc is waiting to see how she responds to Keytruda before making a suggestion for lobectomy.  Another question would be why only Keytruda and not Keytruda and Chemo together for the first 8 sessions - the latter increases the effectiveness of the overall treatment.  And as Pegi said, there are no dumb questions and be sure to take a notebook to write everything down. 
I used these lists of questions to give me ideas of other questions to ask (there is a tab specifically for immunotherapy) https://www.lungevity.org/for-patients-caregivers/asking-right-questions/questions
When my mom was initially told her cancer recurrence was inoperable and that she would be treated with Keytruda/Chemo, she felt she was just buying time. Her ocologist (which doesn't have the most compassion) said that she was indeed buying time. But she would be buying months and maybe even years.  I personally do not feel you are giving your mom false hope.  The more I study Keytruda and see the amazing help it is giving people (including a relative that has used it for the past 2 years for advanced stage melanoma), it is easier to feel optimistic.  The fact that your mom is already healthy is good for her.  I also feel that when we believe something, it can either help us or hinder us.  Helping her to get over the idea that she has a 2 year expiration date may help her health-wise in the long-term.
I'm so very sorry you are having to travel on this journey with your mom.  No matter how old we are, it's still our momma who is sick and fighting for her life - it's not easy.  Take Care
 

Hi there,
I am happy that your mom is allowing you to go with her to the doctor.  One important question to ask is if more than 50% of her cancer cells test positive for PD-L1.  If so, Keytruda has become the recommended 1st line treatment for NSCLC with PD-L1 mutation, at least for early stages.  Perhaps the doc is waiting to see how she responds to Keytruda before making a suggestion for lobectomy.  Another question would be why only Keytruda and not Keytruda and Chemo together for the first 8 sessions - the latter increases the effectiveness of the overall treatment.  And as Pegi said, there are no dumb questions and be sure to take a notebook to write everything down. 
I used these lists of questions to give me ideas of other questions to ask (there is a tab specifically for immunotherapy) https://www.lungevity.org/for-patients-caregivers/asking-right-questions/questions
When my mom was initially told her cancer recurrence was inoperable and that she would be treated with Keytruda/Chemo, she felt she was just buying time. Her ocologist (which doesn't have the most compassion) said that she was indeed buying time. But she would be buying months and maybe even years.  I personally do not feel you are giving your mom false hope.  The more I study Keytruda and see the amazing help it is giving people (including a relative that has used it for the past 2 years for advanced stage melanoma), it is easier to feel optimistic.  The fact that your mom is already healthy is good for her.  I also feel that when we believe something, it can either help us or hinder us.  Helping her to get over the idea that she has a 2 year expiration date may help her health-wise in the long-term.
I'm so very sorry you are having to travel on this journey with your mom.  No matter how old we are, it's still our momma who is sick and fighting for her life - it's not easy.  Take Care
 

Hi there,
I am happy that your mom is allowing you to go with her to the doctor.  One important question to ask is if more than 50% of her cancer cells test positive for PD-L1.  If so, Keytruda has become the recommended 1st line treatment for NSCLC with PD-L1 mutation, at least for early stages.  Perhaps the doc is waiting to see how she responds to Keytruda before making a suggestion for lobectomy.  Another question would be why only Keytruda and not Keytruda and Chemo together for the first 8 sessions - the latter increases the effectiveness of the overall treatment.  And as Pegi said, there are no dumb questions and be sure to take a notebook to write everything down. 
I used these lists of questions to give me ideas of other questions to ask (there is a tab specifically for immunotherapy) https://www.lungevity.org/for-patients-caregivers/asking-right-questions/questions
When my mom was initially told her cancer recurrence was inoperable and that she would be treated with Keytruda/Chemo, she felt she was just buying time. Her ocologist (which doesn't have the most compassion) said that she was indeed buying time. But she would be buying months and maybe even years.  I personally do not feel you are giving your mom false hope.  The more I study Keytruda and see the amazing help it is giving people (including a relative that has used it for the past 2 years for advanced stage melanoma), it is easier to feel optimistic.  The fact that your mom is already healthy is good for her.  I also feel that when we believe something, it can either help us or hinder us.  Helping her to get over the idea that she has a 2 year expiration date may help her health-wise in the long-term.
I'm so very sorry you are having to travel on this journey with your mom.  No matter how old we are, it's still our momma who is sick and fighting for her life - it's not easy.  Take Care
 

Hi there,
I am happy that your mom is allowing you to go with her to the doctor.  One important question to ask is if more than 50% of her cancer cells test positive for PD-L1.  If so, Keytruda has become the recommended 1st line treatment for NSCLC with PD-L1 mutation, at least for early stages.  Perhaps the doc is waiting to see how she responds to Keytruda before making a suggestion for lobectomy.  Another question would be why only Keytruda and not Keytruda and Chemo together for the first 8 sessions - the latter increases the effectiveness of the overall treatment.  And as Pegi said, there are no dumb questions and be sure to take a notebook to write everything down. 
I used these lists of questions to give me ideas of other questions to ask (there is a tab specifically for immunotherapy) https://www.lungevity.org/for-patients-caregivers/asking-right-questions/questions
When my mom was initially told her cancer recurrence was inoperable and that she would be treated with Keytruda/Chemo, she felt she was just buying time. Her ocologist (which doesn't have the most compassion) said that she was indeed buying time. But she would be buying months and maybe even years.  I personally do not feel you are giving your mom false hope.  The more I study Keytruda and see the amazing help it is giving people (including a relative that has used it for the past 2 years for advanced stage melanoma), it is easier to feel optimistic.  The fact that your mom is already healthy is good for her.  I also feel that when we believe something, it can either help us or hinder us.  Helping her to get over the idea that she has a 2 year expiration date may help her health-wise in the long-term.
I'm so very sorry you are having to travel on this journey with your mom.  No matter how old we are, it's still our momma who is sick and fighting for her life - it's not easy.  Take Care
 

Bernie,
I am very happy to hear Opdivo is working so well for you! My mom just began Keytruda and we are hoping to have positive results too!  I'm sure some other folks will soon chime in on your post that either have personal experience with Opdivo or can point you in the right direction.  Take care!

Hi there,
I am glad you found the Lungevity forums...I too am an advocate for my mother who is fighting a recurrence of NSCLC and this community has been a big help in giving me hope and helpful information.  Although my mom has not had experience with Opdivo (she's on her 2nd does of Keytruda/Chemo) I feel your pain and worry.  It's exhausting sitting in the hospital, I hope you are taking reasonable care of yourself so you can continue the fight with your mom.  I am happy to hear your mom is off the ventilator...one step forward!! Take care!