GaryG

Lots of us have the "appearing and disappearing" mystery nodules. Here's what I learned--because CTs examine many discrete "slices" of your anatomy, very small nodules may show up on one scan but not be visible on another. It's not a secret and it doesn't mean anything alarming is happening--it's just a limitation of testing. I keep all my old scan reports and nodules in the same location sometimes show up and sometimes don't--it can also affect the apparent size (depending on angle, etc.). If nothing dramatic is happening, they just continue to keep an eye on them. 

Barb,
Never had a bone scan in my life. Last PET scan was Dec of 2019, and MRI was Jan 2020, I was surprised that my Onc was just doing a CT scan and not a PET scan, she said this visit was for re staging my cancer. I'm confused on that front as well, how the heck does the stage of cancer change? Aren't we still... In my case 3A until I progress hopefully I never will. Unless my scans are just NED? IDK I just hope that's the case hoping and praying that Gods' will is that Durva has did it's NED magic 😃
Oh well still a cancer newbie I guess
Take care all, have a nice evening
Roseann

Good Morning Durva Club!
It seems we have a lot to celebrate! Congrats SillyCat on completing your Durva, I hope your scans come back excellent, please update us once they are back!!!
I just made it to the halfway point, and I'm so excited, it seems to have gone a lot faster than I anticipated. Mind you, I'm only going once a month, so I don't feel my life has been THAT interrupted. (Thanks COVID)
I'm also happy to report that I've had very minimal side effects which has also been a blessing, I'm hoping these next 6 months don't change that. 
I'm curious what the next steps have been for some of you after you've completed treatment. I've talked with my onc about it, and it seems that it depends on how much of the tumor is gone/dead. I'd love to hear some real life stories of what to expect next. 
 

Strange how there is no consistency at all among oncologists. When the I was told I had no mutation, I got visibly scared and shaken up because the oncologist assured me  that there are plenty of avenues available beside target therapy'. Then he explained how I will be on the triplet for 4 cycles then put on a maintenance plan without Carboplatin for up to 2 or 3 years.  I was and still am very surprised by his confidence in the outcome since I was not a candidate for target therapy, surgery or radiation therapy. Hopefully he is right.

I did not have all the testing done because they did not have enough tissue. I think my oncologist was only concerned about ALK and/or EGFR (not sure) in order to choose a path. When those come negative he decided to go right away with the triplet. I was told by few knowledgeable posters here that I should have all the tests done not only once but twice or three times, but that was after the fact and would have taken 4 to 6 weeks.  One should remind the oncologists/radiologists to take enough tissue for many tests  the first time around since they can't figure that out on their own.  
Live and learn (has a nice ring to it when you are a cancer patient). 

Strange how there is no consistency at all among oncologists. When the I was told I had no mutation, I got visibly scared and shaken up because the oncologist assured me  that there are plenty of avenues available beside target therapy'. Then he explained how I will be on the triplet for 4 cycles then put on a maintenance plan without Carboplatin for up to 2 or 3 years.  I was and still am very surprised by his confidence in the outcome since I was not a candidate for target therapy, surgery or radiation therapy. Hopefully he is right.

Wow, Michelle what a rough time you had! 
I had my bronchoscopy on 10/31/19 and I met with my medical oncologist on 11/11/19 and got the tissue biopsy results, including being positive for the EGFR mutation, which my oncologist was "happy" about (he is a very expressive person). At the time I didn't really understand and had a lot of scary information to absorb. I went through 6 weeks of chemo and radiation, and about midway through, my oncologist discussed the plan for after treatments. I am now on a targeted therapy with "continued positive treatment results". 

Thank you Judy.  I’m a poster child for comprehensive biomarker studies in the never smoker population, it was a hard way to lean there are two ALK tests.  The initial ALK FISH test wasn’t sensitive enough to detect since the Foundation One results indicated a low tumor mutation burden.  I’m so grateful my oncologist kept digging.  

Wow! Michelle, I don't believe I ever read your full story before.  What an ordeal you experienced.  And the "moving prognosis" must have been hell.  Thank God you are the athlete and fighter that you are.  I was proud just reading how you handled situations that might have left many of us crushed, especially when added to the shock of cancer and a dire prognosis.
For my part I never realized I should ask for any type of testing.  I always figured that I had been a smoker for many years (having quit in 2003) and was a prime target for cancer as a result of that habit.  What I never thought about is that even a smoker might be more prone to cancer (I believe it hits 1 in 7 smokers) because of a mutation.  Now I wish I had undergone the testing.

I'm so glad you made it through because you're such a phenomenal help to so many, based on your experience and strength.
Lou

Strange how there is no consistency at all among oncologists. When the I was told I had no mutation, I got visibly scared and shaken up because the oncologist assured me  that there are plenty of avenues available beside target therapy'. Then he explained how I will be on the triplet for 4 cycles then put on a maintenance plan without Carboplatin for up to 2 or 3 years.  I was and still am very surprised by his confidence in the outcome since I was not a candidate for target therapy, surgery or radiation therapy. Hopefully he is right.

Strange how there is no consistency at all among oncologists. When the I was told I had no mutation, I got visibly scared and shaken up because the oncologist assured me  that there are plenty of avenues available beside target therapy'. Then he explained how I will be on the triplet for 4 cycles then put on a maintenance plan without Carboplatin for up to 2 or 3 years.  I was and still am very surprised by his confidence in the outcome since I was not a candidate for target therapy, surgery or radiation therapy. Hopefully he is right.

When I was discharged from Hospital A, I was told 48 hours later I had, "adenoma carcinoma, lung primary type".  I really didn't know what the implications of that was and certainly wasn't told about biomarker testing by the pulmonologist.  It took about a week for me to see an oncologist at the only NCI in my State.  Upon the first visit, the oncologist said I was EGFR, ROS1 negative and ALK indeterminate with zero PDL-1.  I had no idea what he was talking about, was still in shock but wrote it down.  When I asked about prognosis, it was grim, six months to live.  My only response was "what?!", which then changed to about 12 months.  I didn't like that answer either and still said "what?!" which then the doctor said with treatment maybe 24 months.  My husband was crushed, my sister was on a girls trip in Miami and I didn't dare tell my parents.   
I was asked to sign some paperwork accepting financial responsibility for up to $5600 for some type of special testing.  I remember thinking, well if we have to pay for this, it will have to come out of our savings account and I didn't hesitate to sign this waiver even though I didn't know what it was really for.  
With a Stage IV diagnosis, I wasn't sure that I wanted chemo with such a grim prognosis.  I was very symptomatic, with trace plural effusion and a worsening cough.  I hadn't slept through the night in about a month, wasn't able to have a conversation either.  I had to write everything down on a pad to communicate.  Somehow, my doctor convinced me that I would feel better if I had a dose of the triplet while we waiting for "these tests" to come back which was expected to take up to four weeks.  I received a B-12 shot and started folic acid supplements and had to wait one week before starting the triplet.   The health insurance company denied the treatment plan stating "chemo was a matter of convenience".   So here I am fighting the insurance company noting the irony of having run health insurance appeals in previous role. 
Two weeks after my initial cancer diagnosis, I  had one dose of the triplet and  a messy port installation the next day.  My symptoms did not improve, the cough worsened and I started opiates. Evidently I was allergic to something in the chemo and part of my face turned purple.   I broke a rib from the incessant coughing fits.   It was a waiting game at this point, but wasn't sure what we were waiting for. 
Three weeks after my first visit with the oncologist, we received a call in the late afternoon asking if we could come in to see the oncologist before office hours the next day.  It was something like 7:30am.  We were not told why we needed to come in person, however, we figured at this point the news couldn't possibly get any worse.  I was scheduled for a second dose of the triplet later in the week which I was dreading because I developed an infection from the messy port install.  
When we sat down with the doctor, he apologized for bringing us in so early.  He said my tests came back for the ALK mutation.  His face is consistently expressionless.  I had to ask, is that good news or bad news.  His response is still me today, "its great news".  My next question was how does this change my prognosis- he said we were now talking about years instead of months.   
The insurance company made a rare move and approved targeted therapy that day.  I picked up the huge bottle from the hospital pharmacy and it sat on my kitchen counter for three days until my nurse chemo teaching visit.    When we arrived for the appointment the nurse educator, she had never prescribed the therapy and we were in uncharted territory.   I had found a number of sources via Dr Google and had more information than she did.  
I didn't hesitate to take the first dose of targeted therapy that evening, almost five weeks after receiving this diagnosis.  Within the hour my cough disappeared, that was 23 months ago.  
I wish the medical team had done a better job of explaining what biomarker testing was all about.  It could have saved us so much grief.  When the biomarker testing was denied by the health insurance company I requested  medical records for the appeal.   It was only then that I discovered my oncologist strongly suspected I had the ALK mutation yet he didn't say a word about it to us.   Played it very close to the vest.  I was mad for only a few seconds because in further reading, I could see the doctor was just as destroyed as we were.   
The health insurance appeals process was terrible, I exhausted the entire appeal process, with the final determination having been made by a board certified INTERNAL MEDICINE physician.   Evidently, "there was no evidence of a mutation" and the tests "were not medically necessary".   I don't think the physician reviewer read past the first note.  
Foundation One called me and offered a "wonderful patient discount" and asked for payment of $3500.  I told them to get lost, I wasn't paying them a dime.  Never heard from them again so to this day I don't know if the testing ever got paid for. 
Waiting four weeks for biomarker testing in my case was a horrible experience,  I can only hope that in the future the process can be expedited.  
 

Congratulations and hopefully that will lead you to a good plan for fighting cancer.

I won the appeal!!!  Just got a call from the nurse case manager for the insurance company. PET approved!  She’s calling the oncologist to get it scheduled. I already left them a message as well. 

Congrats to all of you guys. I love reading all these positive stories!! It really gives me hope! 
Tomorrow is treatment day for me, I’ve lost count/it’s too much to do the math on what treatment I’m on with the switch to monthly! Lol 
I think this is treatment 5 of my double dose?! 
 
either way doing well, no real side effects aside from a sour stomach in the morning. 🙈

Good to hear from you too Opal and congrats on your 2+ years from diagnosis....and to see Bridget and Grahame posting, it's like old times again. I so remember being lost in an ocean of questions and fear when I happened upon Lungevity. We were the pioneers, embarking on this very new immunotherapy drug. We learned along with our physicians and us Durva's picked each other up when we needed picking up and carried others when we could. We weathered the calm seas as well as the oceans squalls. That's one thing I remember so vividly, that time marches onward no matter what the day presented, and that one month easily turned into three and five and eight and then the twelve months were over. For those still on the Durvalumab train, know that there were others before you that had the same questions, and fears and annoying and sometimes debilitating symptoms. But also know that we are your inspiration for a life beyond Lung Cancer......
 
Hello to Tomm, I still love your one liners, I bow down to you OH MASTER OF GIGGLES, to Tom Galli for his eternal and non ending support, Do you ever sleep? and Rower Michelle for her spunk and humor and "let's get it done" Jersey girl attitude, I want you in my corner!!!!, Happy Birthday Ron, and like Opal said, many, many, mucho more to come, Roseann, you go girl, good to see you're still slugging away, admirable fortitude, I'm impressed....and Barb1260, My doc said the same thing when I was done, "Get out of here and go live your life". How blessed we are to be able to do that.....strong words that meant the world to me. Opal, your gentle and Gaman spirit comes thru loud and clear in your postings. You are loved.
And to the newcomers that I haven't met, you're in great hands. Carry on
Blessings, DFK
*Gaman (Japanese)-"enduring the seemingly unbearable with patience and dignity". The term is generally translated as "perseverance", "patience", or tolerance.

These definitions were provided by a general medical oncologist who treats most forms of cancer. He cautions that although the terms have distinct meanings, there is overlap.
Cure. Should be reserved for specific diseases where recurrences happen quickly and one can safely say there is a cure. Not useful for diseases like most cancers where recurrences can occur up to 5-10-20 years later.  Mostly applies to non-melanoma skin cancers.  Commonly used by surgeons who don't follow the patient long-term and want the patient to feel good about the surgery. But this pronouncement can be VERY misleading as I have had patients without followup because the surgeon said: "I was cured,” and then suffered a recurrence.  I use it with qualifiers, such as "about 95-percent chance of a cure" if someone is still free of disease at 5 or 10 years in concert with statistical predictions.
5-year survivor. This term is mostly used to describe patients if still free of disease at that time, and often implies a reasonable chance of a cure.  Most commonly used term now and has supplanted the use of term "cure".
No evidence of disease (NED). Describes how things are at a specific time, such as after scan, surgery, re-staging workup, after chemo, or XRT [radiation therapy].  This is a point-specific-term, and is good, but does not guarantee anything long-term.
Remission. Similar to NED, but usually used after someone has had disease treated by XRT or chemotherapy and not just surgery but is a general term. It IMPLIES a complete remission but not always. The disease has disappeared at least for awhile, to exam or testing.
Several sub classes of remission:
Partial remission (PR) meaning at least 50% reduction in the bulk or evidence of the cancer, usually measured by size in mm or cm. Minor remission or minor regression suggesting the same but at least 25% reduction in size/bulk of the cancer and a less useful term. Complete remission (CR) meaning all evidence of cancer gone after some treatment. Once again, usually after XRT or chemotherapy, but not surgery (surgeons usually just say, "I got it all”). Complete pathologic remission (CPR) (also called complete pathologic response) usually implies that the patient received chemo or XRT PRIOR to surgery (neoadjuvant therapy) to reduce the size of the cancer prior to surgery, and in the final surgical specimen NO cancer was found pathologically. Often used for breast cancer patients.  Partial pathologic remission like CPR but with a poorer outcome. Implies the cancer is sensitive to the treatment but not 100-percent, and often implies need for more therapy after the surgery. Stable. Implies the disease has not grown nor appreciably shrunk (due to variance in measurements, this often suggests a single change +/- 10%), and then the trend in change is the most important determinant.  Used to be considered a reason to change therapy, but in some diseases may imply continued survival benefit, and thus no need to change therapy.
Progression. This is the worst outcome suggesting significant growth or continued trend in growth and implies need to change therapy.  If no therapy, then "Best Supportive Care" (BSC) like Hospice or comfort measures.
There are three other terms used for surgery results: R0, R1, and R2.  These describe visual and pathologic review of the resected cancer specimen.  
R0 implies all cancer removed. No obvious visually or microscopically identified cancer seen. This is the best result after surgery. R1 implies no visual cancer seen, but microscopically tumor can be seen at the margin of resection and suggests some tumor left behind. Likely needs additional resection, or if not feasible, XRT or chemotherapy afterwards to treat the area. R2 implies visual tumor left (macroscopic) and means the same as R1 but a less successful outcome ("I had to leave some tumor behind, it was attached to an artery or major vein, etc").