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!
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!
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?
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?
The first scan 6 months after starting showed some possible shrinkage in the kidney tumor. By one year the lymph nodes had shrunken to normal size and kidney tumor appeared to be gone. No further biopsies have been done. I have been having CT scans with contrast. I have been off that treatment for over a year now and scans have remained clear. Going this week for 6 month recheck so fingers are crossed. I also use an immune therapy using human serum proteins from the Bahamas as well as supplements like Beta Glucan and medicinal mushrooms that support immune function. I have been doing this for years, even before the Libtayo treatment.
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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!
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.
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!
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?
The first scan 6 months after starting showed some possible shrinkage in the kidney tumor. By one year the lymph nodes had shrunken to normal size and kidney tumor appeared to be gone. No further biopsies have been done. I have been having CT scans with contrast. I have been off that treatment for over a year now and scans have remained clear. Going this week for 6 month recheck so fingers are crossed. I also use an immune therapy using human serum proteins from the Bahamas as well as supplements like Beta Glucan and medicinal mushrooms that support immune function. I have been doing this for years, even before the Libtayo treatment.