Introduction

[Justin]

Hi everyone,

My name is Justin and I was recently diagnosed with Stage IV NSCLC with EGFR mutation. I am a 20 year veteran and believe that my disease is a result of my service. I just started treatment last week and am participating in a clinical trial up in Boston. If there are any vets in the New England area on this forum that want to connect please let me know.

[Jesse L.]

Hey there...I too am a veteran, 34 yrs in the Army Reserve. Retired out at age 60 as a First Sergeant in the Army Engineer Corp out of Darien, IL. I know what you mean about service connected disease. I was deployed over 4 years; twice to Iraq and once to Afghanistan. I remember well the forever burning dump at Balad and the Poo Pond at Kandahar; both of which were designated environmental hazards. I am 64 now...

After initially being a stage 1a, I was finally staged at 3a after the surgery to remove my RLL also revealed two affected lymph nodes as well. The surgery completely removed the cancerous nodule and the affected lymph nodes but a stage 3a required more be done. Currently I'm just past the first course in a four course adjuvant chemotherapy treatment to take care of any possible cancer that may escape via my lymphatic system. I'm getting my care through the VA and for the most part I've been satisfied, but I do have some complaints. After reading other people's experiences with their care on these forums though, my VA care is probably not any worse or better than others.

These forums are great with the knowledge and support that you can receive from all the different kinds of people and situations that are on here. We may not be medical professionals, but we concentrate more on comparing stories, recognizing the human aspect, and throwing out tips and tricks to handle difficult treatment side effects. So, stay in touch and talk about anything you like here. We'll be here to answer you...

[LexieCat]

Hi, Justin, and welcome! What kind of treatment are you on--targeted therapy/chemo/radiation/immunotherapy, or a combo? 

I'm also Stage IV but without any targetable mutations. I had a lobectomy for Stage 1b a few years ago, and last summer, almost three years exactly from my surgery, there was cancer in the other lung (a recurrence or a new cancer--docs can't say which). My only metastasis is a tiny bone met on my sacrum, and after a 4-cycle course of platinum-based chemo and immunotherapy, plus a few maintenance cycles (Alimta and Keytruda), the met is virtually gone and I've had a great response to the tumors in my lungs. I've had relatively mild side effects, thankfully.

I see you've found our Veterans' forum, and you've been greeted by Jesse. We also have at least one other active member who's a vet--Tom Galli. He'll be along to greet you before too long. We also have a forum for folks with EGFR mutations, here: https://forums.lungevity.org/forum/54-egfr/

Glad you found us!

 

[Justin]

19 minutes ago, LexieCat said:

Hi, Justin, and welcome! What kind of treatment are you on--targeted therapy/chemo/radiation/immunotherapy, or a combo? 

I'm also Stage IV but without any targetable mutations. I had a lobectomy for Stage 1b a few years ago, and last summer, almost three years exactly from my surgery, there was cancer in the other lung (a recurrence or a new cancer--docs can't say which). My only metastasis is a tiny bone met on my sacrum, and after a 4-cycle course of platinum-based chemo and immunotherapy, plus a few maintenance cycles (Alimta and Keytruda), the met is virtually gone and I've had a great response to the tumors in my lungs. I've had relatively mild side effects, thankfully.

I see you've found our Veterans' forum, and you've been greeted by Jesse. We also have at least one other active member who's a vet--Tom Galli. He'll be along to greet you before too long. We also have a forum for folks with EGFR mutations, here: https://forums.lungevity.org/forum/54-egfr/

Glad you found us!

 

Hi Lexie,

Glad that you're responding well to treatment!

I'm on Tagrisso combined with carboplatin and permetrexed chemotherapies every three weeks as part of a clinical trial. The theory is that the chemo will delay resistance to Tagrisso. I just started treatment on Friday.I also tested 100% for PD-L1 so I've got options down the road. It's been a long road with all the delays at the VA for my diagnosis and testing for the trial but I'm relieved to finally get started. I'm fortunate to live near one of the top cancer centers in the country so I'm in good hands.

Thanks for the info. I've been looking around at the different forums and it's great to see all the different topics and discussions.

[LexieCat]

Oh, great! There are LOTS of us on what we call the triplet--carbo, Alimta (pemetrexed), and Keytruda. After the first four cycles they eliminated the carbo for me and I'm now just on the other two for maintenance. The high PD-L1 should be promising for you for immunotherapy down the line. 

I always say the secret to surviving lung cancer is to stay alive long enough for the next new discovery!

I forgot to thank you for your service--my dad was a 20+ year AF vet. I'm sorry you were exposed to all those chemicals. 

[Justin]

7 hours ago, Jesse L. said:

Hey there...I too am a veteran, 34 yrs in the Army Reserve. Retired out at age 60 as a First Sergeant in the Army Engineer Corp out of Darien, IL. I know what you mean about service connected disease. I was deployed over 4 years; twice to Iraq and once to Afghanistan. I remember well the forever burning dump at Balad and the Poo Pond at Kandahar; both of which were designated environmental hazards. I am 64 now...

After initially being a stage 1a, I was finally staged at 3a after the surgery to remove my RLL also revealed two affected lymph nodes as well. The surgery completely removed the cancerous nodule and the affected lymph nodes but a stage 3a required more be done. Currently I'm just past the first course in a four course adjuvant chemotherapy treatment to take care of any possible cancer that may escape via my lymphatic system. I'm getting my care through the VA and for the most part I've been satisfied, but I do have some complaints. After reading other people's experiences with their care on these forums though, my VA care is probably not any worse or better than others.

These forums are great with the knowledge and support that you can receive from all the different kinds of people and situations that are on here. We may not be medical professionals, but we concentrate more on comparing stories, recognizing the human aspect, and throwing out tips and tricks to handle difficult treatment side effects. So, stay in touch and talk about anything you like here. We'll be here to answer you...

Hi Jesse,

Thank you for your service! Glad that you're doing well with your treatment.

I lived about 50 yeards from the burn pit in Taji. At night the wind would shift and our living area would be enveloped in a fog of what smelled like burning plastic. I had no complaints with my local VA until this diagnosis. It took them 7 weeks just to schedule a CT scan to find the nodule in my lung and the oncologist there did not follow all the necessary steps to confirm my stage diagnosis. I'm fortunate to have private insurance so I elected to get treated at Dana Farber while at the same time asking for the VA to cover my treatment there. There is a VA program called Community Care where they will do that but you need to make a case that the VA is unable to adequately care for you. If you have complaints and with your treatment at the VA you may want to consider that option.

[Justin]

1 minute ago, LexieCat said:

Oh, great! There are LOTS of us on what we call the triplet--carbo, Alimta (pemetrexed), and Keytruda. After the first four cycles they eliminated the carbo for me and I'm now just on the other two for maintenance. The high PD-L1 should be promising for you for immunotherapy down the line. 

I always say the secret to surviving lung cancer is to stay alive long enough for the next new discovery!

I forgot to thank you for your service--my dad was a 20+ year AF vet. I'm sorry you were exposed to all those chemicals. 

That's exactly what I've been thinking! They continue to make a lot of progress on treatments so who knows what will be available in a few years? I'm on a similar cycle. Carbo + Alimta for four, three week cycles and then Alimta only from then on. I'm hoping that not only will the chemo delay resistance but also attack my cancer a second way.

[Judy M2]

Welcome, Justin. I am also EGFR+, diagnosed at Stage IIIB in October 2019, and on Tagrisso for 13 months as a second-line treatment. First line was carboplatin/taxol and 30x radiation. 

You might be interested in the private Facebook groups below. I believe some people are on the same regimen as you, but only after progression. I know that others will be interested in your experience. 

LUNGevity Tagrisso (osimertinib) Patients & Caregivers Group,

LUNGevity EGFR Group, 

LUNGevity Targeted Therapies Group, and

also LUNGevity EGFR Resisters Lung Cancer Patient Group (this group is for people who have developed resistance to Tagrisso and are on the next phase of treatments). 

I do find that belonging to these groups is a double-edged sword. When members have progression or don't survive, it can be upsetting and sometimes I have to step away. But overall, they are a great source of knowledge and support, like this site.

[Justin]

Thanks Judy! I already found EGFR Resistors and connected with a support person. I also appreciate the warning as I'm finding out exactly what you mean.

[Jesse L.]

Hey Justin, in 05/06 I was in Balad and yes they had burn pits there too in which everything was thrown in and it was left to burn 24/7. That was truly some acrid and sickening smoke that, given the winds, could be smelled all over the base. 

Even though I went through that I don't have a lot of faith that the DOD is ever going to fully recognize the dangers they put their Soldiers through. I have vivid memories of the crap they gave Vietnam War Veterans... My significant other's Dad was in the Navy during the Vietnam War and his ship delivered leaking barrels of Agent Orange to that country. He was diagnosed with severe lung issues later in life and by the time an under pressure Congress told the VA to quit denying benefits to veterans adversely affected, he was nearly dead. The VA had rather just kept insisting over and over that his lung problems were as a result of his smoking and had nothing to do with his handling of poisonous  chemicals. In the end the one and only compensation check he received had to be sent back because in that month he died.