rebeccac, So sorry to hear you and your husband are having to deal with this. Head and Neck cancer has had some recent advancement in Immunotherapy with new drugs being approved. I would think that surgery, radiation and chemotherapy might be expected initially in his case. Since his is probably skin origin rather than mucous membrane like oral lesions, he may be a candidate for the checkpoint inhibitor Libtayo (Cemiplimab) the drug I am currently on. While my SCC originated in my ear, and lymph nodes were clear initially, I have had multiple metastases in 10 years since initial surgery. I don't know if the Libtayo is approved as an initial treatment. At Mayo Clinic they tested my tumor for the presence of the checkpoint PD-L1 to see if the drug would be expected to work and I tested high. My tumors have disappeared since starting it almost 2 years ago. I can't stress enough about getting a second opinion at a major referral center to get the most complete and thorough medical care. I would not be alive now if not for Mayo Clinic. Good luck to you and your husband. This kind of diagnosis is overwhelming but stay positive, educate yourselves on options, and seek a second opinion.
I've been on libtayo since 6/24 and still show signs in my left lymph node...just had a biopsy there that was positive for malignancy. You say you've been on Libtayo for 2 years...how long did it take before results could be seen as improved?
It's not unusual for complications from radiation. Proton radiation eradicated the tumor sitting on my epiglottis. Getting rid of that got me on the road to recovery, however, I still required a feeding tube because my esophagus had fused together and I reuired several surgeries to open it back up. The feeding tube provided me the nutrition I required to get back in the game-it only was in for 15 months. Radiation also caused damage to a vocal cord and damaged the inside of my throat so much that I needed a trache to breathe. It's nice to breathe. The upside of a trache-no more CPAP machine and I am geta pass on wearing a necktie for the rest of my life. It is a game of whack a mole, thank God I had a choice in all of these decisions!
Strange...I had Stage 4 as well, and immunotherapy was not even on the table.
Radiation...the gift that keeps on giving. Several months out from the completion of therapy ending last July, I thought I was on the road back to life as I knew it. Putting on weight, getting stronger, eating normally again and life was good. Then, at the end of January, my oncologist informed me on a regular visit that due to scarring and inflammation, he was highly concerned the narrowing he saw when he scoped my throat, would suffocate me. He said he couldn't morally let me leave in such a state. Emergency trachea operation soon ensued.
I still can't eat or drink (have feeding tube). I have trouble speaking, and breathing is compromised. Side affects from radiation could go on for several years or more. You never know what could be around the corner. I don't know weather I'll ever be able to eat or have this tube removed. The doctors sure don't want to comment on it.
Looking back, I don't know if I made the right decision. Mere days before I was out with some friends on our ATV's clearing trails, sawing and removing fallen trees. Very active with no breathing issues apparent to me up to that point.
Funny thing about all of this. I have never gave much thought through all of this, to the cancer. It's the after affects of the treatment that has always concerned me. I have made it clear that I will not do any more radiation therapy.
So far there has been no side affects from the Keytruda. Good to here that this has been effective for many people. Best wishes on your situation.
I'm so sorry for your complications!
I had no idea rad could do such a thing ! My tumor was nearly blocking my
airway too and I couldn't open my mouth all but a few centimeters. The
keytruda started working day 1; tumor shrank , crisis averted.
Cancer is from hell I'm certain. I have to focus on staying complication
free so I can get infusions. Probably the same for you.
I'm only 3 months since diagnosis, sounds like you are further along in
treatment than I am. But, we are still here!
I'm so sorry for the multiple complications you sustained. I had no idea that rad could do that . I guess I need to thank my lucky stars I got offered the keytruda route first . I don't know why treatment protocols differ .
My tonsil tumor was about to block my airway too. Also , I could not open my mouth. I could get liquids and soft foods in but barely. It was getting terrifying that soon my airway would close . Luckily the timing was right and keytruda was started. No need for trach. My tumor started melting and now all is back to functional.
Cancer stinks . It seems like it's all complication after complication ; trying to stay on track and suitable to even receive treatment . I'm only 3 months from diagnosis . My cancer was found by my dentist .
Let's beat this stage 4 throat cancer!
Thankyou for your response! I'm stage 4 so rad./chemo was not offered to me. The keytruda is working ! I'm praying my lung nodule has melted away like my primary tumor. I hope the keytruda works for you !! It's good medicine !
Im curious to know what damage the rad /chem left you. If you don't wish to share - completely understood . Good luck with your treatment !
Strange...I had Stage 4 as well, and immunotherapy was not even on the table.
Radiation...the gift that keeps on giving. Several months out from the completion of therapy ending last July, I thought I was on the road back to life as I knew it. Putting on weight, getting stronger, eating normally again and life was good. Then, at the end of January, my oncologist informed me on a regular visit that due to scarring and inflammation, he was highly concerned the narrowing he saw when he scoped my throat, would suffocate me. He said he couldn't morally let me leave in such a state. Emergency trachea operation soon ensued.
I still can't eat or drink (have feeding tube). I have trouble speaking, and breathing is compromised. Side affects from radiation could go on for several years or more. You never know what could be around the corner. I don't know weather I'll ever be able to eat or have this tube removed. The doctors sure don't want to comment on it.
Looking back, I don't know if I made the right decision. Mere days before I was out with some friends on our ATV's clearing trails, sawing and removing fallen trees. Very active with no breathing issues apparent to me up to that point.
Funny thing about all of this. I have never gave much thought through all of this, to the cancer. It's the after affects of the treatment that has always concerned me. I have made it clear that I will not do any more radiation therapy.
So far there has been no side affects from the Keytruda. Good to here that this has been effective for many people. Best wishes on your situation.
Good to hear. I'm currently on Keytruda for some lung spots after radiation and chemo for throat cancer. I wish that was an option then. The damage from the treatment gets overshadowed by the fact I survived.
Thankyou for your response! I'm stage 4 so rad./chemo was not offered to me. The keytruda is working ! I'm praying my lung nodule has melted away like my primary tumor. I hope the keytruda works for you !! It's good medicine !
Im curious to know what damage the rad /chem left you. If you don't wish to share - completely understood . Good luck with your treatment !
I have squamous cell ca primary tumor on tonsil. On keytruda and metformin. The tumor on tonsil is melting away! Scans to check lungs and lymph node Mets next week ; I'm tentatively optimistic. Any one else on immunotherapy with good results?
Good to hear. I'm currently on Keytruda for some lung spots after radiation and chemo for throat cancer. I wish that was an option then. The damage from the treatment gets overshadowed by the fact I survived.
William Olsen, Volunteer Mentor | @hrhwilliam | Nov 9, 2023
I am amazed at the progress in SCC treatments just in the last twenty years. Not that anyone today would think any of this is easy or simple but twenty years ago there were only standard CHOP chemo drugs and Proton radiotherapy was rare and expensive. The five year rates have vastly improved. Famously Roger Ebert of famed movie critics Siskel and Ebert died from this post therapy and we watched him publicly struggle.
In my observations, early detection (often by dentists) and vastly improved surgeries, radiotherapy, and assistive medicines has vastly improved our collective outcomes. The light at the end of the tunnel is a beautiful light indeed. I wish you all good recovery.
I had good results from Keytruda for a year for my throat cancer. Little to no side effects from what I remember. I was put on a different immunotherapy that was ineffective and caused a skin breakouit that requiredconstant attention. This treatment was ineffetive. Since then they put me on Opdivo and I have had smooth sailing for 10 Petscans with no side effects. I'm pretty sure my luck with Opdivo will run out one day, so I'm just enjoying this ride for now. The docs have a multitude of answers and each one of us is a custom application. Sometinmes it takes time to find the right individual solution. I'm just hopin g I can continue on they find a mor epermanent solution to my chronic cancer. Keep faith in your team. They will work hard and never give up.
Thank goodness you have something that works for you! Glad to hear opdivo is working for you! Sounds like you are in good care and fighting hard. God bless.
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I've been on libtayo since 6/24 and still show signs in my left lymph node...just had a biopsy there that was positive for malignancy. You say you've been on Libtayo for 2 years...how long did it take before results could be seen as improved?
Shelly,
It's not unusual for complications from radiation. Proton radiation eradicated the tumor sitting on my epiglottis. Getting rid of that got me on the road to recovery, however, I still required a feeding tube because my esophagus had fused together and I reuired several surgeries to open it back up. The feeding tube provided me the nutrition I required to get back in the game-it only was in for 15 months. Radiation also caused damage to a vocal cord and damaged the inside of my throat so much that I needed a trache to breathe. It's nice to breathe. The upside of a trache-no more CPAP machine and I am geta pass on wearing a necktie for the rest of my life. It is a game of whack a mole, thank God I had a choice in all of these decisions!
Yeah...that's what I am told. It's been 1-1/2 years so far.
Glad to hear the Keytruda is working for you. I can't say. I have only had 2 treatments and no CT scan or review yet. Not too worried.
I'm so sorry for your complications!
I had no idea rad could do such a thing ! My tumor was nearly blocking my
airway too and I couldn't open my mouth all but a few centimeters. The
keytruda started working day 1; tumor shrank , crisis averted.
Cancer is from hell I'm certain. I have to focus on staying complication
free so I can get infusions. Probably the same for you.
I'm only 3 months since diagnosis, sounds like you are further along in
treatment than I am. But, we are still here!
I'm so sorry for the multiple complications you sustained. I had no idea that rad could do that . I guess I need to thank my lucky stars I got offered the keytruda route first . I don't know why treatment protocols differ .
My tonsil tumor was about to block my airway too. Also , I could not open my mouth. I could get liquids and soft foods in but barely. It was getting terrifying that soon my airway would close . Luckily the timing was right and keytruda was started. No need for trach. My tumor started melting and now all is back to functional.
Cancer stinks . It seems like it's all complication after complication ; trying to stay on track and suitable to even receive treatment . I'm only 3 months from diagnosis . My cancer was found by my dentist .
Let's beat this stage 4 throat cancer!
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Helpful -
Hug
4 ReactionsStrange...I had Stage 4 as well, and immunotherapy was not even on the table.
Radiation...the gift that keeps on giving. Several months out from the completion of therapy ending last July, I thought I was on the road back to life as I knew it. Putting on weight, getting stronger, eating normally again and life was good. Then, at the end of January, my oncologist informed me on a regular visit that due to scarring and inflammation, he was highly concerned the narrowing he saw when he scoped my throat, would suffocate me. He said he couldn't morally let me leave in such a state. Emergency trachea operation soon ensued.
I still can't eat or drink (have feeding tube). I have trouble speaking, and breathing is compromised. Side affects from radiation could go on for several years or more. You never know what could be around the corner. I don't know weather I'll ever be able to eat or have this tube removed. The doctors sure don't want to comment on it.
Looking back, I don't know if I made the right decision. Mere days before I was out with some friends on our ATV's clearing trails, sawing and removing fallen trees. Very active with no breathing issues apparent to me up to that point.
Funny thing about all of this. I have never gave much thought through all of this, to the cancer. It's the after affects of the treatment that has always concerned me. I have made it clear that I will not do any more radiation therapy.
So far there has been no side affects from the Keytruda. Good to here that this has been effective for many people. Best wishes on your situation.
-
Like -
Helpful -
Hug
2 ReactionsThankyou for your response! I'm stage 4 so rad./chemo was not offered to me. The keytruda is working ! I'm praying my lung nodule has melted away like my primary tumor. I hope the keytruda works for you !! It's good medicine !
Im curious to know what damage the rad /chem left you. If you don't wish to share - completely understood . Good luck with your treatment !
Good to hear. I'm currently on Keytruda for some lung spots after radiation and chemo for throat cancer. I wish that was an option then. The damage from the treatment gets overshadowed by the fact I survived.
I am amazed at the progress in SCC treatments just in the last twenty years. Not that anyone today would think any of this is easy or simple but twenty years ago there were only standard CHOP chemo drugs and Proton radiotherapy was rare and expensive. The five year rates have vastly improved. Famously Roger Ebert of famed movie critics Siskel and Ebert died from this post therapy and we watched him publicly struggle.
In my observations, early detection (often by dentists) and vastly improved surgeries, radiotherapy, and assistive medicines has vastly improved our collective outcomes. The light at the end of the tunnel is a beautiful light indeed. I wish you all good recovery.
-
Like -
Helpful -
Hug
1 ReactionThank goodness you have something that works for you! Glad to hear opdivo is working for you! Sounds like you are in good care and fighting hard. God bless.