Lung Metastases, support, outcomes

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Lung Metastases, support, outcomes

by mjackson4639 on Fri Dec 29, 2017 05:23 AM

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Hello, 

My name is Matt. I am on here looking for some answers about advanced stage throat cancer. My dad has Squamous Cell Carcinoma of Supraglottis which did not respond to radiation or chemotherapy. It metastasized to cervical lymph node and lungs. He was diagnosed May 2016. Nearly all treatments including clinical trials have been tried. With very few promising results the possible treatments have come to an end. 

What is next? Watching what he has gone through has been awful, but what comes next as it progresses? Will it usually spread to other regions? How long is average life of metastatic throat cancer once treatment is no longer an option? I just want to be as prepared for what will happen as he becomes worse. Please anyone with similar situations be honest with me. The more I know of what to come next, the more I can support my father as he passes. He has had cancer for nearly 2 years now, but most was on treatments, without can I expect it to spread more rapidly? 

Thank you!!

RE: Lung Metastases, support, outcomes

by Chucksan on Fri Dec 29, 2017 10:49 AM

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Hi Matt,

I'm so sorry to hear about your dad!  I'm only a lay person but have over 5 years of intense study on my wife's squamous cell lung cancer, now in remission after succesful treament wth Opdivo, one of the three new immunology cancer drugs, including Keyruda and Tercentiq.  I also have been studying melanoma.  These new immunlogy drugs are having significan success in treating not only lung and melanoma biut also bladder, liver and others being tested, some in current clinical trails.  Read your dad's treatment history, maybe he has run out of options but I would not give up hope yet.  Here are some questions and comments that perhaps might help.

..... Has his oncologists tried or discusssed Opdivo, Keytruda or Tercentric (all brand names, there are also generic names if you do an online search)?  Or targeted drugs other than more or older concentional chemo drugs

..... Has he had a mutation test to see which drugs might offer most helpful treatments?  These are also known by such names as gene mutations, biomarker tests, molecular marker, etc.  You will see these refered to such as PD-1, PD-1L, EGFR, KRAS, ALK, and so on.

..... Is he seeing an oncologist who specializes in neck and throat cancers?  Many times it is difficult to determine as many general medical oncologists especially at smaller or other than large cancer clinics list that they cover all types of cancer (jack of all trades).  If possible it is best to look at the nearest large metro city cancer center, cancer hospital (many times connected with a medical school).  If in doubt quietly ask the receptionists or staff nurses or chemo nurses and they will know who specializes in which cancers.  The best cancer clinics/oncologists have access to the clinical trials (one, Opdivo, which saved my wife's life, later FDA approved).

info:  EGFR inhibitors: Squamous cell cancers of the larynx and hypopharynx (and other head and neck cancers) often have abnormally high levels of epidermal growth factor receptor (EGFR). EGFR helps the cancer cells grow out of control. Drugs that block EGFR and slow cell growth are under study for use in head and neck cancers. Some of these drugs include nimotuzumab, pembrolizumab (Keytruda®), nivolumab (Opdivo®), and ipilimumab (Yervoy®).

https://www.cancer.org/cancer/laryngeal-and-hypopharyngeal-c

Googlr search for:  immunology and targeted drugs for Supraglottic cancer

Hope I'm overloading you with info.  Many times there is hope.  All ERT doctors and oncologists are no equal.

There Is Hope!  All The Best.

Chuck

RE: Lung Metastases, support, outcomes

by mjackson4639 on Sat Dec 30, 2017 08:55 PM

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Hello Chucksan, thank you for the information. Yes the immunotherapy was used. Was supposed to show promise, but there was no reduction in size and all tumors grew. Yes he is being treated at University of Michigan. Ranked 6thin the country of head and neck cancers. I am not sure about the test being done to check mutation. The most promising was a chemo pill, side effects were horrible but lasted several months. Surgery is not an option as the locations and aggressiveness makes it difficult. We have also been told radiation is no longer an option as he had had a "lifetime" amount of radiation at least on the primary location of cancer.Two clinical trials have been tried with no luck. I cannot remember the name but it was supposed to cut off blood supply and "starve" tumors. 

RE: Lung Metastases, support, outcomes

by Sdurnell on Sun Jan 14, 2018 02:02 AM

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Matt,

As I understand it sometimes when one immunotherapy drug is not successful another might be.

Also if he has never had a second opinion, this would be the time.

You might also send this message to the head and neck forum here as it is more active than the throat cancer part.

All the best,

Susan

RE: Lung Metastases, support, outcomes

by ToddlerFather on Sun Jan 14, 2018 11:52 PM

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On Dec 30, 2017 8:55 PM mjackson4639 wrote:

Hello Chucksan, thank you for the information. Yes the immunotherapy was used. Was supposed to show promise, but there was no reduction in size and all tumors grew. Yes he is being treated at University of Michigan. Ranked 6thin the country of head and neck cancers. I am not sure about the test being done to check mutation. The most promising was a chemo pill, side effects were horrible but lasted several months. Surgery is not an option as the locations and aggressiveness makes it difficult. We have also been told radiation is no longer an option as he had had a "lifetime" amount of radiation at least on the primary location of cancer.Two "" target="_blank" rel="nofollow">http://cancer.Two " target="_blank" rel="nofollow">cancer.Two clinical trials have been tried with no luck. I cannot remember the name but it was supposed to cut off blood supply and "starve" tumors. 

The description of cutting off blood supply suggests antiangiogenics, which actually cut off blood vessel grow. 

As already mentioned, not all immunotherapies are made equal; is one of the metastastes accessible for surgical extraction ? Genetic sequencing of it could speed up the convergence to a medication with more chance of success. 

But if not doing it, trial and error of other medication is better than doing nothing, IMHO.

RE: Lung Metastases, support, outcomes

by Sdurnell on Sun Feb 18, 2018 11:54 PM

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Not to be morbid, but dying of head and neck cancer is not easy or pretty.  I read about U.S. Grant's struggles with in operable throat cancer and he ultimately died of starvation, and was in pain, although they mitigated is as much as they could back then.  

Palliative care is much, much better these days.

Susan

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