It’s in my lungs
the biopsy came back showing spindle squamous cell carcinoma in my lung pleura. My oncologists seem to think that surgery and radiation probably wouldn’t be helpful. I‘m now being thrown into the clinical trial bin, which makes me feel like I have a death sentence. My birthday is this coming May 3rd - I will be 30. I had dreams of having a family and being an old kurmudgeny professor. That no longer seems like an option any more. I just want to scream, but I can’t even do that with all my lymphadema.
John
Comments
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It's not a death sentence!
Hi, John!
I had HPV+ SCC in my left tonsil and soft palate in 2012 and went through chemo/radiation. I then had lung cancer (also HPV+ SCC) in 2015 and had chemo/radiation. It recurred in my lung in 2016 and is considered incurable.
I went into an immunotherapy clinical trial and have been cancer-free for over a year and a half! So it's not always a death sentence--there's hope!
It's worth finding a cancer research center even if you have to travel for it, or to do your own research. Doctors/hospitals will often only tell you about trials they offer, when there might be a better trial out there for you. I switched from UCLA to The Angeles Clinic for the trial that I'm in now.
Some of the most interesting head and neck cancer trials are immunotherapy combo trials. I'd investigate those, pairing Opdivo or Keytruda with other agents. My trial combines Opdivo with epacadostat, an IDO inhibitor, but there are others. The data is super early, but it looks like combos may double the response rate for immunotherapy. If your cancer was HPV+, there's an interesting CAR-T trial in Houston that would only involve travel to the medical center 2-3 times, I think.
The picture for lung cancer or recurrent head and neck cancer isn't at all the same now as it was even as recently as 10 years ago. Have hope and be persistent!
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Hi John,
Hi John,
I am so encouraged for you by Laralyns post. This is certainly beyond devastating news. I am talking to God so hard for you for guidance in finding the right trial, treatment, doctors. MIRACLES happen all the time and I am convinced you will be a miracle and the kurmudgeny professor you dream of. Get busy and focused. I know you can do this.
Nancy
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John,
John,
Sorry to hear this. Truly I am. My husband was recently told his SCC had gotten to the lungs.
It is obvious cisplatin didn’t work. Radiation did as there is no evidence in the tongue area.
So,,,,, onto Opdivo. It is a first line treatment.
Praying. Praying for my husband. Praying for you to wear that cardigan years from now while reading to grandkids in that rocking chair.
We are all here for a reason.
Peace.
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Prayers for your husband too.lorijeannj said:John,
John,
Sorry to hear this. Truly I am. My husband was recently told his SCC had gotten to the lungs.
It is obvious cisplatin didn’t work. Radiation did as there is no evidence in the tongue area.
So,,,,, onto Opdivo. It is a first line treatment.
Praying. Praying for my husband. Praying for you to wear that cardigan years from now while reading to grandkids in that rocking chair.
We are all here for a reason.
Peace.
Prayers for your husband too. Sending you both my love.
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1 +1 = 2 and that is possitive and so should you (Matt logic)
JAL23,
While it may be true that your SCC is a pain in your original life story, please don’t let this current condition defeat you. The clinical trial bin is moving toward mainstream and if the products which make up your DNA correspond with the selected conditions deemed important to the very possible (and leaning steeply toward) successful treatment of cancer with these new methods, you may have hit the cancer cure ball out of the park.
In the beginning of many treatments, those doctors and researchers studying to learn and solve the answers to many human problems had to work up to the cures we have today. I hope you will be handsomely rewarded with a long life and will be the best curmudgeonly (sp) professor the H&N forum has ever had.
You may be limited to the volume of your scream by the edema, but you may be able to make those around you uncomfortable, or turn your face red, or refuse to eat, but read Laralyn’s post carefully, she is the genuine item and may be able to aid you in your search for “BEST” choice.
I must break away from the H&N Tracktor Beam and veer off to eat some good for me tasty food.
Matt
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How are you doing?
Hi John,
How are you doing? I think about you and wonder how you are doing every day. Have you started with a clinical trial? If you are reading this and feel up to it please let us know how you are doing. I am praying so hard for you to get better!
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OpdivoLaralyn said:It's not a death sentence!
Hi, John!
I had HPV+ SCC in my left tonsil and soft palate in 2012 and went through chemo/radiation. I then had lung cancer (also HPV+ SCC) in 2015 and had chemo/radiation. It recurred in my lung in 2016 and is considered incurable.
I went into an immunotherapy clinical trial and have been cancer-free for over a year and a half! So it's not always a death sentence--there's hope!
It's worth finding a cancer research center even if you have to travel for it, or to do your own research. Doctors/hospitals will often only tell you about trials they offer, when there might be a better trial out there for you. I switched from UCLA to The Angeles Clinic for the trial that I'm in now.
Some of the most interesting head and neck cancer trials are immunotherapy combo trials. I'd investigate those, pairing Opdivo or Keytruda with other agents. My trial combines Opdivo with epacadostat, an IDO inhibitor, but there are others. The data is super early, but it looks like combos may double the response rate for immunotherapy. If your cancer was HPV+, there's an interesting CAR-T trial in Houston that would only involve travel to the medical center 2-3 times, I think.
The picture for lung cancer or recurrent head and neck cancer isn't at all the same now as it was even as recently as 10 years ago. Have hope and be persistent!
Hi laralyn, I am considering Opdivo. Just waiting to have my throat heal from 2nd radiation to prevent bad side effects. Can you tell us how often you received Opdivo and how you felt while getting it?
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Hi John
I am in the same boat as you. Considering Opdivo/immunotherapy. Hang in there. It stinks to have cancer spread but as laralyn says, there are treatments today. Cancer is more often than not a chronic illness. I am not trying to downplay this awful disease, it clearly needs to be respected. But, you went through so much all at once. If you need to talk I can send you my email. Take care.
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Hpv base of tongue cancerLaralyn said:It's not a death sentence!
Hi, John!
I had HPV+ SCC in my left tonsil and soft palate in 2012 and went through chemo/radiation. I then had lung cancer (also HPV+ SCC) in 2015 and had chemo/radiation. It recurred in my lung in 2016 and is considered incurable.
I went into an immunotherapy clinical trial and have been cancer-free for over a year and a half! So it's not always a death sentence--there's hope!
It's worth finding a cancer research center even if you have to travel for it, or to do your own research. Doctors/hospitals will often only tell you about trials they offer, when there might be a better trial out there for you. I switched from UCLA to The Angeles Clinic for the trial that I'm in now.
Some of the most interesting head and neck cancer trials are immunotherapy combo trials. I'd investigate those, pairing Opdivo or Keytruda with other agents. My trial combines Opdivo with epacadostat, an IDO inhibitor, but there are others. The data is super early, but it looks like combos may double the response rate for immunotherapy. If your cancer was HPV+, there's an interesting CAR-T trial in Houston that would only involve travel to the medical center 2-3 times, I think.
The picture for lung cancer or recurrent head and neck cancer isn't at all the same now as it was even as recently as 10 years ago. Have hope and be persistent!
Hello. I just read your answer that there is a hope about immunotherapy. My father is about to start and i lost my hope . It’s growing . Please get back with me if could. Thank you.
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Hello. My father is about toCurlyn said:Hi John
I am in the same boat as you. Considering Opdivo/immunotherapy. Hang in there. It stinks to have cancer spread but as laralyn says, there are treatments today. Cancer is more often than not a chronic illness. I am not trying to downplay this awful disease, it clearly needs to be respected. But, you went through so much all at once. If you need to talk I can send you my email. Take care.
Hello. My father is about to start immunotherapy for his base of tongue cancer which grows aggressively second time. I am hopeless. Can I do anything to make things better ? Treatments are at Osu James center. Great place, great doctor team. But I feel like I should do more.
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Update on JAL_23
Hi All,
My name is Emily and I am John's (JAL_23) widow. John passed away suddenly at Memorial Sloan Kettering Cancer Center (MSKCC) in NYC on June 11, 2018. I was right beside him, holding his hand when he passed.
Like everything with John's cancer - his passing was also shocking and unexplainable. He had been admitted to MSKCC for "symptom management" - largely due to a spike in his calcium level. About 5 minutes before he passed we received good news that he was going to be discharged the next day and would receive a second round of immunotherapy before heading home (as you may recall - he had just started a clinical trial.) The doctor walked out and as the next nurse was walking in John squeezed my hand in our special unspoken language for "I love you" - and with that he closed his eyes and passed away. His team said the only thing that could have caused him from being awake and alert and talking to just gone was a giant blood clot or an embolism. It's the most painless and the fastest way anyone can go. Given the treatment outlook, it was probably a blessing but more than that, I am comforted by the fact that we never EVER gave up. We fought to the very end. He wasn't even on oxygen at the end. I had spoken with his surgeon who happened to be rounding on the floor just a few hours before he died and I said: "are you sure we are doing the right thing?" and she assured me that he was young and we had every reason to keep fighting.It's hard to believe it's been almost two years. I am sorry I didn't reach out sooner with this update. I know how much he appreciated all of you and valued your support. I miss him everyday.
Mainly I just wanted to post here to say thank you. John was the smartest man in any room but he was also a fiercely private and independent person. I am so glad he had all of you to offer support through this difficult journey. My heart goes out to all who are battling this nasty disease - and your families, too. Please know that although we will never know your pain, we are fighting right alongside you.
with love and hope,
Emily
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