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Thread: Squamous Cell LC with occult primary

  1. #141
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    I have some very good news and some questions.

    Last Friday (end of week 4 of chemoradiotherapy), my radiation oncologist told me that all three of my lymph node tumors had dramatically shrunk and were almost gone. Since I didn’t have any actual tumor in my lungs (as far as they could tell), this is really good news. I saw my radiation oncologist again this morning, but she didn’t give me any more updates on progress. I think that was because we were more concerned about side effects. Or rather side effect singular, because the only serious side effect I have had so far is radiation burn on my neck. She assured me that what she saw I.e. the actual condition of my skin was more or less standard for this stage of treatment. I am just having an issue with pain, because the Oxycodone is turning out to be ineffective for me (well, it gives me side effects, but doesn’t seem to relieve the pain); Tylenol is more effective as far as it goes. I suppose I will just have to suck it up. Only 5 more radiation treatments left.

    My medical oncologist wants me to extend the Carbotaxol for two additional sessions because I have been doing so well on it. So, we are going to tack on infusion 7 & 8 next week and the week after.

    So good news there.

    My question is about possible immunotherapy. I am worried about this because I have a history of autoimmune disease (and tested positive for anti-nuclear antibodies). As far as I know, the clinical trials with Imfinzi excluded patients with autoimmune disease, so there just isn’t a lot of information out there on the safety of immunotherapy in cases like mine. That coupled with the fact that by the time we do pre-immunotherapy CT-scan six weeks after the end of chemoradiation, I may very well have a “complete response” makes me wonder if I should risk not going forward with the Imfinzi.

    I have already discussed the possibility with my thoracic oncologist (one of the authors of the Pacific Trial; so, a real expert) before I began chemoradiation and he seemed genuinely perplexed about what to recommend. He hemmed and hawed, mentioned the fact that I had autoimmune disease (possible counterindication) that my PD-L1 was high (possible motivation) and finally just said: “Let’s see how you handle the chemoradiation. In the meantime, we will keep that as a maybe.”

    Another issue as I see it, is that Imfinzi is for people with stage 3 NSC lung cancer, but I only have presumed stage 3 NSC lung cancer. In other words, it is not even 100% sure I have lung cancer.

    I think it would be nice to get the Imfinzi to mop up any micrometastases that may be out there. But I also know that squamous cell carcinoma tends to spread locally and regionally before it metastasizes distantly and the radiation I am getting is already including apparently uninvolved lymph nodes surrounding the involved ones.

    I’m not expecting any one here to make a decision for me (I mean if even an expert is left scratching his head ....), I just want to say that I think it will be a hard choice to make and do not know how I will make it.

  2. #142
    Hi

    Sounds like treatment is going well. Congrats on that!

    With regards to the follow on treatment. Would you be in the PACIFIC Trial? Or would you be definitely be given Imfinzi? If you are in the trial you might be given a placebo.

    mike
    At the time - 46 yo male, non-smoker
    Sept 2012 - DX - One tumor NSCLC Squamous Cell Right Upper Lung
    Oct 2012 - TX - Treatment similar to Pancoast Tumor - Pre-operation radiation and chemo (5.5 weeks of IGRT and 3 cycles of Cisplatin and Etoposide)
    Dec 2012 - Surgery - Remove RUL, Surgical Pathology Report Adenocarcinoma T2N0M0
    Now - Wait, watch, & pray

  3. #143
    Moderator Top User jorola's Avatar
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    Very good news on your progress.

    As for you question that is a difficult one. My husband lucked out and the chemo and radiation was enough to make him NED (no evidence of disease) and has been now for 5+ years. Due to your unique situation it is hard to say even if you are NED afterwards if that will be all the treatment you need with no danger of recurrence. I guess that would be my question to the doctors - based on the info they have now, what do the doctors think your chance of recurrence is?

    May your good progress continue!
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  4. #144
    Moderator Top User IndyLou's Avatar
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    Hi, Melisande. Nice to hear your update. I have to say that I’m perplexed that a doctor suggested immunotherapy following your chemoradiation. It sounds speculative at this point, at the best. To suggest that there may be “microstases” following radiation AND chemotherapy defies my understanding, but I am not a doctor.

    As immunotherapy is relatively newer, especially Imfinzi, ask your doctor what their approach would be if Imfinzi didn’t exist? If there wasn’t yet another expensive treatment to administer?

    Remember what we said before, there are no 100% guaranteed treatments in this space.

  5. #145
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    Quote Originally Posted by mike.b View Post
    Hi

    Sounds like treatment is going well. Congrats on that!

    With regards to the follow on treatment. Would you be in the PACIFIC Trial? Or would you be definitely be given Imfinzi? If you are in the trial you might be given a placebo.

    mike
    It wouldn’t be the trial. It would just a treatment option plain and simple.

  6. #146
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    @jorola,

    Thanks, that was exactly the question I was thinking of asking.

    I’m am going to go back and read about your husband’s experience again.

  7. #147
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    @IndyLou,

    Yes, immunotherapy after concurrent chemoradiation is now considered standard of care for stage III NSC lung cancer. For H&N cancer, immunotherapy is only offered for stage IV disease.

    The problem as I see it is that it has not been proven I actually have lung cancer, it is merely presumed. I stopped worrying about the actual diagnosis during chemoradiation because I would have been treated in a very similar fashion whether I had a H&N cancer or lung cancer. Well, actually, my thoracic oncologist (the medical oncologist) told me that the radiation I am getting is non-standard for lung cancer, but standard for H&N. (Among other things, lung cancer patients get a lower dosage of radiation— only 60Gy in 30 sessions. I am getting 66Gy in 33 sessions.) My Carbotaxol chemo is standard for stage 3 lung cancer, but I probably would have had it anyway even if I had had a clear H&N diagnosis because I would not have accepted Cisplatin.

    But now with immunotherapy it will make a difference if it really is lung cancer or not. Presumably my thoracic oncologist is aware of all the question marks behind the diagnosis and will be open to me possibly refusing the treatment.

    Although, I have to say, it is psychologically difficult to refuse any treatment even if it might be the right thing to do.

    I am also wondering what the efficacity curve for immunotherapy is like. I think it’s possible that you get the most benefit for your treatment buck early in the game, so maybe I could just have a few sessions instead of doing an entire year of treatment. That is something else I am going to ask about.

    But then again, if I have NED by late December which I am expecting at this point (golly probably shouldn’t write that and tempt fate though), how will I know if the immunotherapy is doing anything or not?

  8. #148
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    Just wanted to give an update:

    My last radiation session was on Nov., 15th. At that time, my worst side effect was a large (approximately 25 square inch) second degree radiation burn on my neck & shoulder. It was really quite painful and difficult to live with. I also had a fair amount of fatigue, esophagitis and a mild cough (which I did not have before radiation).

    My radiation oncologist told me to expect my symptoms to worsen for a week after treatment, sort of bump along the bottom for a second week, then slowly begin to improve by week #3.

    In reality, this is what happened: My symptoms worsened for about 5 days, then began healing. Today marks the end of my second week post-radiation. I would say the burn is at least 40% healed and the area that remains is now more itchy than painful. The fatigue was definitely bad the first week after treatment (one day I actually slept for 15 hours), but now I am feeling much better, with almost normal energy levels. My esophagitis has almost completely gone away. The cough has definitely improved, but is still present, especially when I am lying on my back trying to go to sleep. It doesn’t bother me at all during the day though and it doesn’t actually interfere with my sleep, so I am OK with that too and assuming it will continue to fade away like everything else.

    I am really happy with the results so far.

    BTW, I have also greatly reduced my pain meds (Tylenol and Oxycodone) and plan on being completely off in a couple of days.

  9. #149
    That sounds great Melisande, keep it up!!!
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

  10. #150
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    Thanks Pet!

    As of today, I am in a true quandary with regards to immunotherapy with Durvalumab. I got a call this morning from the nurse of my medical oncologist at Moffitt and he told me that based on my recent autoimmune blood test results, he is currently leaning against immunotherapy for me.

    I am dumbfounded. The autoimmune blood test results were negative for all tested autoimmune diseases, except for Sjögren’s syndrome. I tested positive for one of Sjögren’s syndrome antibodies (SS-A) and negative for another (SS-B). However, I have no symptoms of Sjögren’s or of any autoimmune disease. I am concerned that he is misinterpreting the results and thinking that I actually have an autoimmune disease or a latent autoimmune disease when the tests actually show no such thing. (You can test positive for antibodies associated with a certain autoimmune disease and never get thst disease). Also, if I eventually did get it, so what? It’s not like it’s fatal. It’s more of a nuisance condition for most people.

    Anyway, I know he’s leaning against the immunotherapy partly because of the blood test results whether or not he has interpreted them correctly, but I wonder if there is more going on here.

    Unfortunately, I was told no more discussion on this matter until Dec. 27th.

    It just seems so weird to me that a well-known expert would be leaning against what is essentially standard of care for stage III NSC lung cancer. There must be more here than meets the eye. But what is it?

    Should I destroy the precious longed-for peace and quiet of the holiday season by trying to set up a third opinion with a super expert at MD Anderson or Sloan-Kettering or elsewhere? Or should I just wait until the Dec. 27th visit, near what his reasons are ... and then take action if so think he is missing the boat?

 

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