Totally confused

[Granmaof3]

I have joined the forum to get support and a better understanding of my husbands chronic illness. He was diagnosed 25th March with non small cell adenocarcinoma lung cancer. It is in the left lung T4 N2 Mo EGFR Negative PDL 1 Expression 20 % we have seen an Oncologist who has started treatment of radical radiotherapy 55gy in 20 fractions. Today was his 7th appointment. He has to wait 4 to 6 weeks to be scanned again. It said on his notes reassessment for future chemotherapy. There was a delay in his diagnosis as they thought it was lymphoma. His bronscophy was inclusive he had an EBUS followed by mediastinascophy he had internal bleeding and they removed the camera probe to quickly causing vocal chord paralysis. 2 weeks later he had a Vats procedure and suffered from surgical emphasimia. Also on his medical report if said not eligible for immunetheraphy as a first line treatment. But I clearly remember the oncologist saying radiotherapy let it settle rescan then a cocktail of 2 chemotherapy drugs and immunotherapy I had read up about keytruda and I asked if he could have that and was told yes. Now I am totally confused. Any advice would be greatly appreciated. We are in the UK 

[Mamma Om]

Hello from the U.S. I had lung cancer two years ago. My initial diagnosis came from a needle-core biopsy. It was adenocarcinoma, a smallish nodule in the lower right lobe. Surgery was done to remove the whole lobe, after PET scan showed no metastasis. At that time I was told no need for chemo or radiation, removing the lung lobe would be enough. But then, at pathology another nodule was found and that was determined to be small cell lung cancer, a virulent form of cancer. I was rushed into having a port put in, plans for concurrent chemo and radiation, chemo classes, meetings with oncology and radiology........I found out that I was not eligible for immunotherapy because I have a compromised immune system from rheumatoid arthritis. On the very morning of the first chemo, I met with the oncologist. She said that she was suspicious of the diagnosis of the second nodule as small cell, so she sent my case to the weekly tumor board, composed of Doctors, Radiologists, Pathologists, and more. They decided that the second tumor was a rare neuroendocrime carcinoid, not usually found in the lungs. The good news is that I needed no further treatment for it beyond the removal of that lobe. So my point is, don't be surprised if your husband's diagnosis or treatment options change as you move through this journey. Medicine is complex, cancer is more complex, treatments change and evolve daily. As more clinicians become involved in your husband's care, things can change, and that's good. It means that many educated minds are at work to find the best path for your husband. Feel free to ask questions, though, if you're confused. I found the American Cancer Society to be a great source of information, available by phone 24/7, and they don't mind if you call multiple times a day! You may have a similr organization in the U.K. Bests wishes to you both.

[Tom Galli]

Granmaof3,

Welcome here!

Your husband's lung cancer (T4 N2 M0) stages at IIIB. This link may help to understand the EGFR negative and PD-L1 expression biopsy results in terms of treatment. You reports a VATS surgery. Was the surgery completed? I don't understand the term "emphasimia." Do you mean emphysema? Was his surgery stopped or not undertaken because of discovered emphysema? I assume so because you cite 20 fractional radiation treatments, normally a first line treatment method when surgery cannot be used. Your questions is about immunotherapy as a treatment and when it could or should be administered.

First, please understand I am not knowledgable about the UK's medical system and its standards of care for various presentations of lung cancer.  Fractional radiation is indeed effective for tumors in the lung that invade nearby tissue (T4), and is found in nearby lymph nodes (N2). The M0 classification indicates no distant metastasis, a good thing. In the US, first line (first treatment) national standard of care for your husband's lung cancer would normally be fractional radiation and conventional chemotherapy (a platinum based doublet). These could be offered sequentially (radiation first and chemotherapy after) or together as a concurrent treatment. So your husband appears to be receiving what would be considered first line national standard of care in the US. 

To your question, can immunotherapy (Keytruda) be administered together with conventional chemotherapy. The answer is complicated. You report a PDL 1 expression of 20%. Assuming you mean a PD-L1, the 20% expression of the tumor proportion score is greater than 1% which qualifies use of Keytruda in the US, but the conditions for use get complicated. Much too complicated to explain in my response. You can read about Keytruda and when it is prescribed in the US here. After going to the link, click the side arrow titled WHAT IMMUNE CHECKPOINT INHIBITORS ARE FDA-APPROVED? FDA, by the way, means the US Food and Drug Administration, the approval authority for all US prescription medication. 

My advise would be to ask his doctors to explain how a combination of conventional chemotherapy with immunotherapy would produce better results than the conventional chemotherapy alone. Moreover, I'd inquire about Keytruda side effects given your husband's age and state of health.

I'm sorry this a complicated answer. Lung cancer treatment is complicated these days and that is a good thing.  Not to many year ago, it was fractional radiation, conventional chemotherapy pairing of Taxol and Carboplatin, and hope!

Don't hesitate to ask further questions. I do hope your husband's treatment arrests his cancer making the Keytruda use academic.

Stay the course.

Tom

 

[Granmaof3]

Hi Tom thank you so much for taking the time to reply. My husband had the mediastinascophy and the results were not clear he also suffered from paralysis of the vocal chords, a rare side effect that they leave for 9 months to see if it repairs itself or if he needs to see a surgeon. 10 days later he had the vats procedure they did not remove any part of the lung as the surgeon said there was alot going on with the lymph nodes being on fire and the location, the mediasternum. Ten hours after surgery he suffered surgical emphasimia where the head and neck swell up. Its a rare occurrence only happens in 5% of vats procedures. The oncologist decided to start the radiotherapy on its own and then start chemotherapy and immunotherapy together because of the corona virus he advised this was the best course of action. His consultant was very matter of fact about his prognosis 3 to 6 months with no treatment or a bit longer with treatment. He maybe should be advising world leaders on when the corona virus will end 😳 and God has the last word 🙏However the oncologist was great his first words were I cannot cure you but I can treat you. We were both very relieved when we left his office. You have explained it so much better than the consultant and I thank you for that. 

[Granmaof3]

7 hours ago, Mamma Om said:

Hello from the U.S. I had lung cancer two years ago. My initial diagnosis came from a needle-core biopsy. It was adenocarcinoma, a smallish nodule in the lower right lobe. Surgery was done to remove the whole lobe, after PET scan showed no metastasis. At that time I was told no need for chemo or radiation, removing the lung lobe would be enough. But then, at pathology another nodule was found and that was determined to be small cell lung cancer, a virulent form of cancer. I was rushed into having a port put in, plans for concurrent chemo and radiation, chemo classes, meetings with oncology and radiology........I found out that I was not eligible for immunotherapy because I have a compromised immune system from rheumatoid arthritis. On the very morning of the first chemo, I met with the oncologist. She said that she was suspicious of the diagnosis of the second nodule as small cell, so she sent my case to the weekly tumor board, composed of Doctors, Radiologists, Pathologists, and more. They decided that the second tumor was a rare neuroendocrime carcinoid, not usually found in the lungs. The good news is that I needed no further treatment for it beyond the removal of that lobe. So my point is, don't be surprised if your husband's diagnosis or treatment options change as you move through this journey. Medicine is complex, cancer is more complex, treatments change and evolve daily. As more clinicians become involved in your husband's care, things can change, and that's good. It means that many educated minds are at work to find the best path for your husband. Feel free to ask questions, though, if you're confused. I found the American Cancer Society to be a great source of information, available by phone 24/7, and they don't mind if you call multiple times a day! You may have a similr organization in the U.K. Bests wishes to you both.

Thank you Mamma Om . Its early days and I have alot to learn. We had so many plans for this year. I have just finished radiotherapy 4 weeks ago for breast cancer after a lumpectomy. My husbands diagnosis came a week later and this corona virus has put alot ot treatments for cancer on hold. Hopefully by the time his radiotherapy finishes and he has his scan things will have settled down and he will be able to move onto his next treatment.