Just found this forum ...

[Melisande]

I was diagnosed with stage IIIb squamous cell LC back in August. I completed chemoradiation at Moffitt Cancer Center on November 15th. And I found this forum just today.

At the moment, I am struggling with whether or not to do immunotherapy with Durvalumab/Imfinzi and wanted to post in the immunotherapy forum, but am not allowed to? Yet?

Anyway, my local oncologist is telling me that I should definitely be on Durvalumab, the sooner, the better, but also that I should definitely not start until    I consult with my medical oncologist at Moffitt which I will do at the end of this month (in 21 days to be precise). I have heard from my Moffitt oncologist’s nurse that he is definitely leaning against immunotherapy for me. 

All of this is causing me no small amount of stress right now, particularly since I have heard that the sooner Imfinzi is started the better. My consultation with the expert oncologist will be 42 days after the end of treatment, then I will have to make a decision myself and get insurance approval before I can begin. So, I am doing what I can to inform myself before this late visit so I don’t have to waste time afterwards trying to make a decision. 
 

So, reasons why my oncologist is and/or might be leaning against immunotherapy in my case:

1. I know that at least part of the reason he is leaning against recommending Imfinzi for me is that I have a history of autoimmune disease.

I was diagnosed with Autoimmune Inner Ear Disease four years ago (rare disease). I had active disease for three months, during which time I went legally deaf in one ear and became hearing impaired in my other ear. Treatment with steroids and an immunosuppressant restored much of my hearing in the less damaged ear, but not in the worse ear. I have been totally off all medication for this AI disease for two and a half years and my otoneurologist thinks that at this point I have probably l licked it for good. But, who knows, maybe it will come back and I will go deaf on Imfinzi?

My oncologist at Moffitt had me do an autoimmune antibodies test anyway and it came back positive at a titer of 1:640 (I.e. very positive) and also very positive for one of two antibodies associated with an entirely different autoimmune disease — Sjögren’s syndrome. I have no symptoms of Sjögren’s syndrome and according to my rheumatologist a positive ANA without symptoms doesn’t mean much and certainly doesn’t mean I’m going to get Sjögren’s.

2. I have atypical stage IIIb squamous lung cancer. I only have/had tumors in three upper mediastinal lymph nodes (1 supraclavicular and 2 paratracheal). There is no evidence of any tumor in my lungs. Because the histology is squamous cell, there is no histochemical evidence that I have lung cancer per se. The only reason they are treating me according to stage III NSC lung cancer protocols is the location and pattern of my lymph involvement combined with the fact that there were no tumors founds in my pharynx or esophagus. This is an uncommon presentation of stage III NSCLC and there has been very little research about it. However, I did find one article about it written by a team at Sloan-Kettering and published earlier this year. They did a retrospective study on their own NSCLC patients and compare the 19 cases of NSCLC with occult primary to about 1000 cases of NSCLC with known primary and found strikingly different outcomes. The five year overall survival rate for occult NSCLC with chemoradiation alone (and no immunotherapy) was 62% vs. 16% for all stage NSCLC with known primary. Their conclusion was that NSCLC might be a separate and heretofore undescribed disease with a different biology. 
 

3. I do not know for sure yet since I haven’t yet had a high quality CT scan or a PET, but I may already be NED. After two weeks of chemoradiation, I noticed that my one palpable lymph node had shrunk. My radiation oncologist scoffed when I told her: “Two weeks is too early for a response!” But sure enough, the next week she told me all my lymph node tumors were shrinking and by week four she said they had all “shrunk dramatically and were almost gone.” I was hoping that at the end of chemoradiation she would pronounce me NED, but apparently she can’t do that until there are some high quality scans. 

So maybe all these things taken together are cooling my Moffitt oncologist on the Durvalumab idea.

 

However, on the pro-Durvalumab side we have:

1. I am in one of the sub-groups most likely to respond since I am younger (55), a never smoker, and my tumors apparently expressed PD-L1 at a high rate. The pathology report said 100% PD-L1. My Moffitt oncologist scoffed at the 100% (he said the actual percent was meaningless) and just wrote “High” PD-L1 in my chart.

2. My local oncologist suggested that since I am a never smoker and have no history of cancer in my family, but did have immunosuppressive treatment for a year and a half, my cancer may be immune-mediated and thus may respond very well to Imfinzi (he said this before the pathology report came back with 100% PD-L1. In essence, he accurately predicted high PD-L1 based on my history. 

So, I am in limbo here.

Very good arguments both for and against Durvzlumab. I would go for a third opinion, but frustratingly I haven’t had my second opinion yet. Still waiting ... and, no, they absolutely will not move up my appointment at Moffitt.

What would you do? 

 

 

[LUNGevityKristin]

Welcome, Melisande!  I don't have any treatment advice but just wanted to say feel free to post anywhere here!

[Steff]

Melisande,

You have some tough choices to make. A third opinion sounds like it will definitely be needed. Let me give you my perspective- a caregiver of a mother with uncontrolled Rheumatoid Arthritis and who is awaiting her 1 year scan after stopping immunotherapy (Keytruda).

1. Lung cancer is persistent. My mom is on her 1st recurrence and it will probably not be her last. My mom initially had a lobectomy after her diagnosis of NSCLC adenocarcinoma, stage 3a. She had to have follow up chemo and radiation afterward because 1 cancerous lymphnode was unable to be removed. 1 year after treatment ended, her lung cancer was back. This time, she was given 6 rounds of chemo + Keytruda and then followed with Keytruda alone for nearly a year. She now has no evidence of active lung cancer and has been this way for a bit more than 1 year. You will likely meet survivors here who are on their 2nd, 3rd, and 4th recurrences. Some with the same diagnosis as you. So, one reason why one doc is suggesting further treatment is due to the persistence of lung cancer.

2. My mom has autoimmune issues as well that has resulted in rheumatoid arthritis that has not been controlled by meds for several years. Her oncologist was worried about mixing RA and immunotherapy. The reality is that no one can tell you how you will react to immunotherapy. My mom was able to be on it for over 1 year. She did get pneumonitis and colitis that had to be treated with steroids. The colitis was a severe case and was the deciding factor that led to no more Keytruda. Luckily all was resolved with steroids and time. Now, my mom was not facing the concern of deafness as you are, but I wanted to give you an example of someone who was successfully treated with immunotherapy who also had autoimmune issues. 

Finally, I am happy you found us and can share your experience and ask questions. I hope we can provide what you are looking for.

Take care,

Steff

[Tom Galli]

Melisandre,

Wow—an unusual presentation and interesting dilemma. For information, I had Sjogten’s markers show up in blood work incident to my diagnosis but symptoms didn’t start till about a year ago. That’s 16 years from diagnosis to symptom onset. 

First, you can post anywhere you wish. The “durva” group is an interesting resource and you are most welcome anywhere on this forum.

So about your limbo, my view is hoping you are NED already and discussion of immunotherapy for recurrence is an academic exercise. But if it were me, I’d try the immunotherapy. In fact after my third recurrence I had Tarceva in combination chemo. This targeted therapy drug is now only used for a very small population of adenocarcinoma NSCLC folks who display requisite markers. But in the Jurassic era of lung cancer treatment, oncologists threw everything at a recurrence. All I got were side effects. But, lung cancer survivors grasp at possibilities even with low probability of success. 

Consistent with your doctors advice, I’d try the immunotherapy. I’ve read too much good news about the therapy. 

Stay the course. 

Tom
 

 

[Melisande]

Thanks! 
 

I have decided however to wait until I at least hear from the expert oncologist (the guy at Moffitt). I just wouldn’t feel comfortable starting Durvalumab without my second opinion (for which I am patiently waiting). To be honest, if it weren’t the holiday season, I might try to squeeze in another expert opinion somehow in the next couple of weeks. But my Holiday season has already been partly ruined (we have to fly back early for my end of December appointment at Moffitt, then fly back out again) and I feel it will be thoroughly ruined if I try to squeeze in something else in at SK or MD-Anderson. In other words, if I do that, the cancer will have already won.

Another  reason why I am waiting and not attempting to fly around the country for a more forthcoming expert opinion in the next couple of weeks is because I am still busy recovering from chemoradiation and I am dealing with another mystery ailment (unrelated to my cancer) which needs to be diagnosed ASAP. It is a mystery cardiac arrythmia. I have had atrial fibrillation, but I am almost sure it is not that. This past year, I have had multiple incidences of this arrythmia and it feels like my heart moves suddenly between different speeds with strings of premature ventricular contractions thrown in for good measure. It feels very uncomfortable, and is probably not that serious in general. However,  sometimes  these episodes get bad enough that I start passing out (pre-syncope). I had one of these severe episodes just two days ago. For at least a half hour, whenever I got up and attempted to walk, I immediately started passing out and would have to sit down immediately (directly on the floor) to keep from falling. This time, when that happened,, I used my Apple Watch to get an ECG and I saw that my heart rate was regular, but was at 240 beats per minute (absolutely not normal when you are just sitting on the floor). 

In any case, my electrophysiologist and I have been trying to figure out what is going on for some time now,  but whenever I have a monitor, my heart behaves itself. (I also had an echocardiogram and a stress test which were normal.) Now, I have some evidence so hopefully he can help me stop browning out at random times. Anyway, this is my big health project for the next couple of weeks.

Anyway back to the cancer: I know I am taking a slight risk by potentially starting the a Durvalumab a little late, but as far as I understand it, the reason Durvalumab is more effective closer to the end of chemoradiation is that chemoradiation unregulates PD-L1. But my PD-L1 was already at 100%, so why would I need it to be upregulated? I brought this up to my local oncologist (the one who was saying Durvalumab ASAP) and he didn’t really have a good answer, he just kept repeating himself. 

I asked the local oncologist what would happen if I decided to not go for the Durvalumab but did get a recurrence. He said that I could go on Keytruda in that case. I said: “But that wouldn’t be in a curative context anymore, would it?” And he said, “Yes, it would.” And proceeded to quote me stats on how effective Keytruda can be. Moreover, he said that Keytruda is even more effective for  “treatment naïve” tumors — I.e. ones that were not treated previously with another PD-L1 blockade immunotherapy agent, like Imfinzi/Durvalumab. 

So,  now I am thinking that if my scans look really good at the end of December, if it looks like an early NED for me, then maybe I can see if I am in the lucky group of those who go into long-term remission with only chemoradiation (possibly more likely for me given the unusual presentation of my NSCLC). Then, if there is a recurrence, I go try the Keytruda on my still treatment-naïve tumors. 

I really like this option because it seemingly avoids the risk of overtreatment without taking too huge a risk with the cancer. This is of course if what my local oncologist told me was actually true. I haven’t had the heart to go do follow-up research myself, but this scenario does seem somewhat too good to be true. 

One possible catch I can see already is that if I do have a recurrence, I am betting it will be a recurrence in the lymph nodes and not true metastatic spread. I think this is actually the most likely scenario with squamous cell carcinoma which does tend to spread locally and regionally for quite some time before it metastasizes distantly — unlike adenocarcinoma which  tends to metastasize distantly earlier in its “career.” But of course, there are always exceptions. 
 

And, finally, I have definitely heard that autoimmunity flares (or immune-related adverse events) on Durvalumab can be managed with steroids. And this can be true for autoimmune immune inner ear disease. However, for AIED, you need to be on top of it absolutely right away otherwise you risk permanent hearing loss. So, I think I would feel constantly on edge, unable to engage in any exotic travel, unable to stray too far from my otoneurologist, tethered as it were ....

[Melisande]

I saw my expert, second-opinion oncologist yesterday. He laid out his reasoning for watch-and-wait instead of immediate immunotherapy with Durvalumab and I have to say I was convinced. He said he would certainly support Keytruda for me if I had a recurrence, but that in his mind the potential harms of Durvalumab outweighed the potential benefits at this point. It was not an easy decision for him (and me). 

He was against it for me mainly because of my history of autoimmune disease, but also because my tumors have responded very well to chemoradiation and there are indications that “my” squamous cell carcinoma is on the less aggressive side. He said: “sometimes not doing something is the wisest and most difficult choice.”

I agreed with everything he had to say. Plus I have to say that I felt particularly annoyed at my local oncologist for insisting that I could keep on living my normal life while on Durvalumab when this was patently false. My informal “job” as a spouse involves lots of travel, some internationally and some to third world countries. There is no way in hell I would be able to do this on Durvalumab and yet he insisted I could go to sub Saharan Africa while on Durvalumab irregardless of my a history of autoimmune disease. Um, I don’t think so. 

[Tom Galli]

Melisandre,

I'm happy you got a confirming second opinion and that your chemoradiation treatment resulted in a lasting NED. Let's hope follow up scans continue to yield the same result.

Stay the course.

Tom

[Peninoregon]

Wow, I just read your post I too only have cancer in supraclavicular and paratracheal nodes, biopsy said adenocarcinoma we did radiation to a tiny spot in lung radiation dr said he wasn’t even sure that was a tumor just odd man out on all scans. I took at 2 weeks saw that neck go down quick I have done the 22 imfinzi treatments and re pet scanned; those 2 spots are swelling back up, dr is nervous but said it’s way to soon for that to be progression but wanted a biopsy I met pulmonary dr few days ago and am declining that bronchoscope I same day met with radiation dr and asked him his opinion he thinks it’s swelling from imfinzi and offered biopsy on supraclavicular node it’s at 1cm, my oncologist is on vacation she doesn’t know I am refusing the the spot biopsy. This medicine has been strange I had a big spot pop up on liver, she was convinced progression then went for biopsy and it 2cm was completely gone, she has no idea what it was and thyroid went way out of wack she pulled trigger for meds that same day labs came back completely normal again, she said I was an anomaly. Now this I can’t wait for ultrasound to show this went back to normal, keep the dr head spinning.

 

[BridgetO]

Hi Pen and welcome,

My head would be spinning, too!  You've got spots coming and going. Let's hope they're all going soon, so   you can relax.  Keep posting and let us know what happens next and how we can support you.

Bridget O