Newly diagnosed

[GaryG]

I am glad I found this site. Sad to say it: Déjà Vu. In 2005 I lost my first wife of 30 years to colon cancer. We spend two and half years battling the beast day in and day out when we were given only 6 months.

I am 74 year old male just diagnosed with Adenocarcinoma stage 3 B. Unfortunately my PD-L1 level is zero so Immunotherapy as only treatment is not an option. My cancer is quite large so radiation therapy is also not an option for now. The doctor wants to start me on carboplatin/keytruda/alimta.

He mentioned that the PD-L1 level is not a true indicator of success/failure and that he saw many positive numbers not respond to immunotherapy while some negative number responded well to carboplatin/keytruda/alimta. 

My question is: Did anybody have any luck shrinking the cancer with that regimen and if not are there any other options. The EGFR test result is not ready yet so the we don't know if target therapy is an option. Thank you for your help.

 

 

 

 

[Rower Michelle]

Hi Gary,

I’m sorry that you’re in this situation, believe me when I say we understand what you are going through.   
 

A word about the EGFR test, hopefully the oncologist is doing what is referred to as a full panel biomarker, also known as next generation sequencing/ comprehensive biomarker test.  (All means the same thing).  Why is this important?  It helps determine how to best match your treatment.   
 

I had the EGFR and PDL-1 panel too.  I was negative for EGFR and had zero PDL-1.  I started the treatment that has been recommended to you also known as the triplet while we waited for the comprehensive panel to come in.   Turned out I had the ALK Positive mutation (common with zero PDL-1).  I was switched to targeted therapy (pills).  
 

Stage 3b is actually pretty rare as most lung cancers are diagnosed at Stage IV.  As a result there is little consensus on how best to proceed        I would recommend obtaining a second opinion to ensure all your options, including cutting edge clinical trials have been evaluated   

The triplet is now the standard of care for “garden variety” adenocarcinoma.  Many people here have had that regime and did quite well.  I’m sure you’ll hear from them soon.  
 

Glad to have you here!

Michelle

 

 

[GaryG]

Michelle: . I had 3 Xrays, one CT scan, one bronchoscopy, one MRI on the brain, one PT scan and a biopsy and that lead the cancer team at the hospital to the 3B classification. My oncologist  said that he will not begin any therapy till the results of the  comprehensive EGFR test are in. I did not realize the importance of those results till you explained it. I wish you the best with your treatment  and thank you again for taking the time to help me understand. I feel lucky to belong here. Gary

[Lisa Haines]

Gary,

     Sorry to hear you are now facing your own cancer journey.   You've come to a great group and you'll find lots of support here.  

      I agree with our doctor's decision to wait for all the biomarker results before you begin any treatment and also agree that PDL1 does not always mean that Immunotherapy will not be beneficial for you.

     I have Stage IV NSCLC (Adeno) and was diagnosed back in March of 2015, (before they had "full genomic testing" available).  I was tested for the most common mutations (EGFR, ALK, ROS, KRAS etc) and I am KRAS positive, but currently there is not a targeted treatment for that particular mutation.    I also NEVER had PDL1 testing done, because it was not a standard test and back then the Immunotherapy drugs were still only available in Clinical Trials.   I started with the standard treatment, which at that time, was two chemo meds (Carboplatin and Alimta), they still use those two drugs, but now also combine it with Keytruda (Immunotherpay) and this "triplet" is now the standard for most.     I did quite well initially on chemo, but did have progression after I was put on Alimta maintenance.  thankfully, by that time the FDA had approved two Immunotherpay drugs and I was able to go on "Nivolumab" (Opdivo), which had been approved as a second line treatment "regardless" of PDL1 Status.    I was the very first patient at my local hospital to go on Immunotherapy and I am the longest survivor and continue to be doing well.    Opdivo, was my life saver and within a few months I had positive results and was Stable by six months and have been ever since.  I've now been Stable for over 4 years and have also been "off" all treatment since August 2016.    I did have side effects, which ultimatley led them to stop the treatment, but by that time it had worked well.   When I first stopped, we all assumed I would probably have to go on another treatment, if I had progression, but to date, that has not happened and I've now been "off" all treament for almost four years.    I know quite a few folks who were also diagnosed around the same time I was and also did the same basic treatment, we all started with Chemo and moved to "Opdivo" after progression and most of us are now Stable or NED (No Evidence of Disease) and have been off treatment for 3-4 years.  The majority of us had some type of side effect that caused us to be taken off of Opdivo, but even so, we've all remained stable for long periods.  My Oncologist tells me that the most recent data seems to indicate that people who had my type of response are now expected to see continued long term stability (based on data from the original clinical trials), he feels I should continue to do well for many years and he is thrilled with my results.   I see him every three months and have scans every six months, my next scans are coming up in August.   The good news is that many patients with even Stage IV Lung Cancer are living long lives and more and more lung cancer is  being treated as a "chronic" condition.

   I wish you the very best and hope you too will do well with your treatment.    

      Lisa

[GaryG]

Lisa:Thank you so much for your response. Since I shared my story I waited desperately for a post like yours. You answered so many questions even after I spend days reading on this site and elsewhere. I am still waiting for the results of the final tests hoping for a mutation with an existing drug but seeing your results gives me hope and most importantly the will to fight. I will read your post each time doubt enters my mind . Thank you again for taking the time to share your experience. It meant so much. I wish you the very best.

Gary.

[Lisa Haines]

Gary,

  I am very happy to hear that my experience was helpful to you and I truly wish you the very best too!   Please keep in touch and let us now when you have your test results back.   I know the waiting can be the hardest part, so hoping it won't be too much longer. 

  One other thing I can also share is that I have always tried to remain very determined and have said from day one that I am going to beat this, even before we had Immunotherapy.  For me, this all started with a very sudden onset of neuro changes that I first thought was "vertigo".  I never had any symptoms or suspicion of  lung cancer - no cough, no SOB, no chest pain - nothing.  I actually had hip surgery exactly 4 weeks before my diagnosis and my Pre-Op Labs and Chest Xray were all fine.   I  developed what they said was "post op" Pneumonia the day after surgery. At first they thought it was the Flu, but I tested negative, so they they ran to more chest xrays and diagnosed me with Pneumonia, even though I had no symtoms and the fever was gone the next day?    I went home a couple days later and began my recovery.    Then the "vertigo" like feeling started, I went to see my PCP and he did a Neuro Exam and I knew I had failed and he sent me directly to the hospital for an urgent Head CT Scan and they found a brain tumor, within hours I lost use of my right arm/hand and my speech.  I was sent by ambulance to a larger sister hospital and admitted to a Neuro Unit and all the tests began.  The next day one of the tests was a Chest CT Scan and that's when they saw the lung tumor and also found that I had a Pulmonary Embolism (again with no symptoms or warning).   Needless to say, I was totally overwhelmed -- I had a brain tumor, lung tumor and a Pulmonary Embolism, just four weeks out from hip surgery, still in PT and using a cane to get around.   The outlook was pretty grim - but I told my husband and my two sons that I was going to fight hard.    I am so thankful that I had a Oncologist who was into research and who had been following the immunotherapy trials very closely.  I tell her all the time, she saved my life by encouraging me to try Opdivo when I had progression later that year.  At that time, there was very little known about Immunotherpay and knowing I'd be the first patient at my hospital to try it was pretty frightening.    I still remember how big of an "event" it was.  Bristol Myers sent in team to train the staff and they were there for my first infusion.    It was a life changer for me, no doubt about it.  It has given me 5 plus years and two little grand-daughters who I am thrilled to have in my life.     

  Hope this is also helps provide you with some additional encouragement...

     Lisa

   

  

 

 

 

[GaryG]

Hi Lisa: What helped me with your post is that you told me the whole story from start to finish. I kept reading other posters on this site and all I see is "this worked" or this didn't work". Without knowing the full story it was impossible to formulate an opinion. Maybe I am not familiar with all the posters since I just started.  I am sorry to hear about your other health problems and I am glad they are behind you. Before being diagnosed with cancer I was as healthy as can be with the only setback are 2 knee replacements from playing sports, still they never slowed me down. I traveled around the world, played Tennis and walked almost daily and enjoyed gardening. My big mistake was smoking 35 years ago for 10 years. Maybe it caught up with me. My friends and family are all surprised to see me this sick. I will take cancer as a challenge and work hard to beat it. You gave me all the reasons to do so. Thank you again and best of luck.You are a real fighter.

Gary

[Steff]

GaryG,

My mom had 6 sessions with the triplet recommended to you and then went on to about 1.5 years of Keytruda only for her adenocarcinoma recurrence, initially stage 3a.  She did have a high level of PD-L1 cells.  She had a tumor on the back of her trachea which was closing off airflow in which a tracheal stent had to be placed.  Within 6-8 weeks, the tumor had shrunken enough to have the stent removed.  It's been nearly 2 years since her final Keytruda treatment and (knock on wood) her lung cancer has not returned.  You can read more about her journey  here  and  here.

I hope my mom's experience can answer some questions for you and give you some hope.

Take Care, 

Steff

[GaryG]

Hi Steff: Thanks for sharing your Mom's story. Unfortunately my PD-L1 is zero.

Question though: Did you Mom had the high level pf PD-L1  before or after the 6 sessions with the triplet? 

I thought   Keytruda could be used first for people with positive PD-L1.

Thank you

Gary

 

[Steff]

Gary-

My mom had a high PD-L1 prior to beginning the triplet.  Keep in mind, this was nearly 3 years ago and lots has changed since then. In fact, my mom was diagnosed in June and the triplet had just been publicly released as more effective than Keytruda alone just 2 months earlier.  Although my mom has a high PD-L1 percentage, immunotherapy can be very effective in folks without PD-L1 too.  The Keynote-189 trial showed increased survival rates no matter what their PD-L1 number, as long as it was combined with alimta and either cisplatin or carbo for first-line treatment in metastatic non-squamous NSCLC.  The triplet has become a standard of care for many.  However, as Michelle discussed, ruling out any other biomarkers/mutations is really important.

[GaryG]

Thanks again Steff: So much knowledge and wisdom I feel spoiled. I am constantly  reading trying to get educated but you ladies put me on the right track in no time. I wish and hope I can help others the way you helped me. I will however read about the  Keynote-189 trial in order to catch up.

Thank you once more.

Gary

[Lisa Haines]

Gary,

    Feel free to ask any questions, we are all happy to share our experiences with you.    Much of what we have learned is because of what we've been through or because of others who shared their experiences with us.    I am very thankful to people I've met in Support Groups and would have been lost without them.   LUNGevety is an amazing group and I'm very thankful to be one of many members.   I'm also now very happy to be a Lung Cancer Advocate and love being able to help others.  

  PS: My hip surgery was "hip replacement" surgery and I'm now in the need of having my other hip done, but it's been put on hold because of Covid.   Hoping this time it all goes very well and I do not develop any problems. 

   In hindsight we now know that I never did really have "post op pneumonia", it was actually lung cancer that was missed on those chest xrays.  Just seems so surreal to think that everything up until the surgery was all fine, then just a month later I find out that I have Stage IV NSCLC that had already spread to my brain and caused the PE!   Clearly, this is a sneaky cancer and far too many of us do not find it until it's advanced.  Thankfully, we've come a long way in the past few years and now have more treatment options than ever before.

   

 

 

[GaryG]

Hi Lisa: It sure is good to be in good company. My cancer was also discovered because of pneumonia. Bones and limbs surgeries? I am an expert😀  My first knee replacement was painful and  took few months to heal. Few years later when I had the second one replaced, I was able to take steps the same day I had surgery and within 2 months I was play tennis. I understand that hip replacement is now performed as an outpatient procedure while the rehab time is short. I will take knee and hip replacements any day over lung cancer. Sometimes we don't know how good we have it . 

[Lisa Haines]

Gary,

  Here in my area  hip replacement surgery still "currently" requires one overnight in the Hospital and then 3-4 weeks of in home PT,    I'm currently booked for September and hope Covid is controlled by then, so I'll feel safer in the hospital and having PT in my home.  Right now I am not ready and also concerned about having all those people in my home, because we've been to protective of keeping our home safe and very well sanitized and disinfected and have not had people here.     I will be having my pre-ops next month along with my next round of CT Scans just before that, so I'm hopeful they will continue to be stable.

  When I had the first hip done, I was up and walking the same night, which seemed pretty amazing.   But, shortly after that I stared having significant pain and I had a really rough time.   I was still expecting to go home the next morning and just hoped they could get the pain level down.   Unfortunately, that's when I developed the fever and that's when the started running the tests and doing the chest xrays.   At first ,they thought I had the Flu and put me on "Precautions", but it came back negative and that's they when started running more labs and also did a Portable Chest Xray in my room.   That afternoon, they told me the chest xray showed that I had early pneumonia and they considered it post op pneumonia, most likely related to anesthesia and intubation and said it was something that can "happen" to anyone after anesthesia.       Ironically, other than the pain, I felt okay, the fever had also resolved and I had no symptoms of pneumonia or even any cold like symptoms.  No cough, no chest discomfort or pain, not breathing issues.  I was using my spirometer without any difficulty.      My only complaint was horrible hip and low back pain.   The bed itself was extremely uncomfortable, and I felt better sitting up in a chair, but simply moving to get up was agonizing.   With the exception of the birth of my children, it's the most horrific pain I've ever had.    I continue to push to the PT, but every second was misery, but I knew I had to walk and be able to "do stairs' before I could go home.   The third day my pain was even worse and my hip and feet were very swollen, they then tested me for a DVT, but all was fine.  My bloodwork was all fine too, and we were still waiting on the blood cultures.   That day they talked about me maybe have to go to Rehab before home, but I was very much against that idea, so I keep pushing to walk and be up more so I could go home.   Early that evening, they removed my IV, as I was then scheduled to go home the next day and start PT at home that afternoon.   Unfortunately, I hd another horrible night and the next morning they changed my pain meds and gave me an injection of some sort (I forget not, but it was the most relief I had), but then I ended up being dehydrated, so I needed IV fluids, and it meant I needed to have a new IV put in, oh joy!   They had a terrible time trying to start on and after several more sticks they called IV therpay an finally were able to get one started - it was not pleasant, but it was finally in.     (This is why I have a port and I'm so thankful to have it)!  Even before my surgery they had a hard time starting to IV, so I never liked them.  Blood draws are fine, but IV's are NOT!  

    Finally, the the following afternoon, they discharged me to home --  my lab cultures had come back fine, my white counts were fine and the pain was tolerable.   I just wanted to be in my own bed and be home.  Sleeping in my own bed never did work out and I found I needed to be in a recliner to be the most comfortable.  I think it was about three weeks, before I could finally sleep in my bed.   It was not an easy recovery.   Unfortunately, in my case they never found the cancer then and I had been "misdiagnosed"  with Post Op Pneumonia.   Three weeks out I had one more follow up chest xray and they then told me it was still "resolving" pneumonia?  I had a total of 5 chest xrays between my pre-op and and not once was there every ANY indication of lung cancer or any tumor?

    Even then they did the urgent head CT scan and found the Brain tumor, we still never initially thought about lung cancer.  I had a cousin who had a Glioblastoma about a year before, so my first thought was that I had the same type of brain tumor.  I was quickly transferred to a new hospital, but to a Neuro unit and started further testing.  The second day there I had a brain MRI and then had the Chest CT and that's when they first say the lung tumor and of course the Pulmonary Embolism - that's when everything changed and then came the Oncologist and ultimately my cancer diagnosis.    

     I have often wondered MANY times, how they missed it on 5 chest xrays and this is why I never trust only a chest xray for diagnosing Lung Cancer.  IF they had diagnosed it in February, versus a month later, would it have been found before the brain met developed?   If I had not developed the sudden Neurological changes, how much longer would it have been before I was diagnosed?    When I did ultimately learn that I had Lung Cancer that had spread to my brain, I was instantly told it was Stage IV and now understand why, but back then I was so confused.  How could I be fine one month and month later have Stage IV Lung Cancer and no one saw on those five chest xrays?   I was really upset about the fact that it had been missed and it made me very angry to think they missed it that many times???   I've now moved past that and have given up on trying to figure that out.   I can't  keep wondering about the "what ifs" --- I'm just happy that once it was found that I had an excellent team and that they all worked really heard to get me where I am today.

  But, I also admit, for me it's VERY scary to have to go through this surgery again and wonder if it will bring out something else, kinds of feels like my hip surgery was a jinx, which I know may make no sense to others, but I know for me it's why I have put off having this second hip done for such a long time.   At this point the pain has won over and I can't continue to hobble around any longer, but I DO fear surgery and just HOPE it all goes well.   I did not have a good experience with mine and it was really a tough recovery --  but I also wonder if my recovery was "harder" because I also had "un-diagnosed" cancer at the time?  

  Now, I can THANK YOU for your encouragement and now you can help me feel more secure in going through with my second joint replacement surgery.   Believe me I know many who've had both knees and hips and they all did well, but I struggled a LOT and that's why I've dreaded going through it again.   I am still scared and not at ALL looking forward to it.  Yes, I want it over and want to be out of pain, but I know the pain will get worse before it gets better and that part  is not going to be easy.   To me in many ways my cancer treatment was easier?  Go Figure!!

     Lisa

    

[GaryG]

Lisa:  What a journey. You are quite a fighter and more power to you.  X-Ray missed my cancer also so it is not reliable.  I am sure now that they located and treated the cancer  , your second hip surgery should be just routine. I am assuming that you opted for the 'Minimally Invasive Total Hip Replacement'. If not, it is worth your while looking into it. With this procedure, you should expect quicker recovery time because only a small incision is required, leading to less scarring. In any event, best of luck and thantk you again for your help.

Gary

[Lin wilki]

Lisa. I have to jump in here. 3 years ago I had knee replacement surgery. It was difficult but even after 8 weeks of therapy I continued to improve ROM. But since then I noticed a lack of cardio conditioning. I never felt SOB but mainly fatigue. I couldn’t walk up hills without help, I struggled on our normal 10 mile bike rides

At my annual doctor visits I told him my thyroid must be messed up since I cannot get my energy back. Thyroid fine. 2 years after knee replacement I had a weird cough. At doctor visit I mentioned that -now xrays ct scans Sent to pulmonologist Took months of tests finally biopsy — stage 4 adenocarcinoma!  So in retrospect I think my body was saying something is wrong!!  Who would think lung cancer???  
So here again at time of knee surgery they saw nothing on x rays. I was angry for a long time.  I realize I have to let it go and deal with what is. But still my husband and myself sometimes just say “how did this happen?”  I guess it’s all in the “plan”

We all come to this diagnosis in the beginning saying “why”??  But here we are

[Lin wilki]

Gary.  We’ve all been where you are. It gets better!

[GaryG]

Thank you Lin: When you have time could you please explain your cancer treatment journey? I know you were diagnosed as stage 4 but what about your PD-L1 status, protein and type of treatment you were given? I  want to learn as much as I can so I can help others when the opportunity arises.

Thank you

Gary

[Lin wilki]

Love to!  I went first line into clinical trial  stereotactic radiation (very successful) followed with Opvido and Yervoy Immunotherapy. When I asked at 3 month scan which showed enlarged lymph nodes (they said probably inflammation) they told me PDL 0!  Doc at time said some people with low PDL do well on immunotherapy and others with high PDL don’t so continue with trial. 6 month PET showed lots of progression. That was my lowest point!  That’s when I found out have HER2 amplification Then chemo. Carboplatin and Alimta 4 rounds. Slight improvement Alimta maintenance-  some growth still after about 3 rounds. So finally my target drug. Infusions of Kadcyla. First 6 week scan Good!  Next scan in August. Hopefully continue with killing tumors

Most annoying side effect had been dry mouth and fractured ribs since chemo from steroids.  
So I have finally accepted I live a slower paced life and will never regain the body I once had. But here and enjoying grandkids and life as it is

[GaryG]

Lin: I wish you complete recovery soon and thanks for sharing.

Gary

[Lisa Haines]

Lin

  I agree with you and over time I did have to "let it go" and instead focus on my treatment and recovery.   I can't go back in time and wonder about all the "what if's" and it would not change a thing at this point.     Hoping very much this time the surgery and recovery will be much easier.   I also do have Fibromyalgia and have been living with that for close to 20 years now, so that also plays a role in my level of pain and fatigue.   I will always need naps and know I seem to require more sleep than others, mostly because I do not sleep through and often wake in the night in pain, needing to change my position.  I do HOPE once I get through this second hip surgery and the recovery that the pain level will decrease substantially.   

 

  Gary,

     Yes, I am having minimally invasive surgery as I did the first time, but this will be with a new surgeon, so it'll be interesting to see if I notice any difference.  My first was done with the small incision and that is now barely visible.   While this surgeon will be new for me, he's been in practice for many years and he himself has had two hip replacements done.  My original surgeon has relocated and now lives down in the Carolinas, so I needed to find some one new.   I met with two Ortho surgeons and really liked this one the best.  I also really like his staff and the other members of his team.  He also came highly recommended by two close friends who had hip surgery after my first one.  They both had excellent results and seemed to have a much faster recovery then I did, so that's also promising.  I'm hoping this will be easier than the first time.   I do think that having "cancer" brewing in me probably did play into my recovery.   Time will tell! 

 

  Thanks to you all foe the support...

   Lisa