Head & Neck SCC, 3rd Recurrence. Any success stories with Immunotherapy?

MJsWorld

I have been desperately browsing and searching to find useful information online, but only have been bumping into scary statistics. I found Inspire, Cancer Compass and CSN websites and decided to sign up on all three in hope to get more information. 

Our story. In 2010 my hubby was diagnosed with SCC after removal of a lump on one side of his neck. Primary was never found and he was HPV positive. Never a smoker or drinker, always a health nut. Did a regular brutal radiation, but no chemo and no tube. Over the two years was clean when in 2013 Pet scan showed 10 mm mass on the exact same surgery spot. He had neck dissection with lymph nodes removal, all came back negative. His doctors decided to give him IMRT plus Cisplatin, told us it was ok. If we could go back we would’ve  refused second radiation, two years is too soon to have another one. But if we knew then what we know now. He still handled both pretty well, still no tube. For five years he ate great, looked great, worked out every day, full time job.

But he developed pretty bad esophageal scarring and shoulder/neck pain stiffness from the radiation, it started several months ago. He is taking painkillers to handle it, had esophageal dilations done. His scans were good until last July, 2018. We were so hoping that once we reached that five year mark we would be golden. Pet scan showed two suspicions spots by the supraclavicular area with SUV 5 and 6, that area is about 1” below his surgery site. The doctor said that while his SUV is not 21 or 25 that he sees often, it was still concerning enough to request a needle biopsy. So we did and sure enough it came back same SCC! He said that it’s possible that just one cell was left behind and it took it a long time to get to this size. All that radiation and still one cell has gotten away? I asked if surgery was an option and he said he didn’t think so since it was irradiated area, although only an ENT surgeon can say for sure. My God. So much for better prognosis with HPVl positive. We were floored. The doctor said that immunotherapy is our best option and that we would qualify even if he is PD-L1 negative since it’s another recurrence, so he is not even going to test for it. It sounded like we would be just shooting in the dark. He said if that doesn’t work then we try Erbitux and if that doesn’t work then Carboplatin. He explained that those are the easiest to tolerate and because my husband is still active it would give him a better quality of life.

Has anyone experienced something like this with H&N SCC? I searched, and searched, and searched, my head hurts. I cannot find any stories about #3 recurrences after 5+ years and that makes me sick to my stomach from worrying. I would so love to hear from anyone who was in a similar situation. Please share what you’ve been offered, what treatments you’ve done, how many, was it one or a combination of two treatments, how you tolerated it, your results? Is there a hope for patients with two recurrences? The doctor said that we would get immunotherapy anyway, whether we are negative or positive...but doesn’t that really mean that they are grasping at straws and just throwing a treatment just to give us something, since there is nothing else? I’ve read many lung cancer success stories with immunotherapy, but I am yet to see success stories with head and neck cancer multiple recurrences and immunotherapy. I am so stressed I can’t sleep or eat, I roam around like a zombie during the day. All I am doing over and over like a robot is trying to find something to give us some peace of mind, something to believe in. Thank you guys! 

phrannie51

Me!! I’m on my third recurrence....

.....I’ve been on Keytruda for 14 months, and it kept me stable for 6 months....and kept everything stable except one node down by my collarbone. Mine too, was inoperabl, or so they said here where I live. There is a type of surgery being done as a clinical trial....so, where do you live and could you travel.....be gone for 5 to 7 days?  I had the survery done in April....and the Dr. who did the surgery said he considered it curative. 

Because of the placement of your hubby’s recurrence, I think this is something you guys should look into....

p

phrannie51

phrannie51 said:

Me!! I’m on my third recurrence....

.....I’ve been on Keytruda for 14 months, and it kept me stable for 6 months....and kept everything stable except one node down by my collarbone. Mine too, was inoperabl, or so they said here where I live. There is a type of surgery being done as a clinical trial....so, where do you live and could you travel.....be gone for 5 to 7 days?  I had the survery done in April....and the Dr. who did the surgery said he considered it curative. 

Because of the placement of your hubby’s recurrence, I think this is something you guys should look into....

p

Here’s more info...

 https://csn.cancer.org/node/317512

I wrote this the other day. 

p

joannaw81

hello

Hello, I have not been active in this formum for awhile as my mom has been cancer free for 6.5 years now. I do stop by from time to time. I immediately thought I should tell you my mom's story as a recurrance is not always a death sentance. Please go to my profile to read about all my mom's recurrances.

First she had tonsil cancel with surgery to remove it on the left side as well as it was in 1 lymph node, she also had radiation- this was between november of 2010 and she finished radiation in february of 2011.

then in october of 2011 her cancer had spread to the front of her tongue, removed- no chemo or rads,

later it appeared in one of her lymph nodes on the right side-removed

then it appreared on the tongue again, removed- no radiation and chemo

her last surgery was on 3/2/2013 I believe, she has been cancer free since then.

note, the doctor has told me that she was going to die sooner then later from this. she is still here, heatly and well.

Do not give up, everyone is differenet, positive thinking, dont give up, all the best to you

momall25ofu

MJ, hugs and prayers for you

MJ, hugs and prayers for you and your husband.  

I am sitting here clapping for the advice and stories of success from Phranie and Joanna.  

mehrdad357

MJsWorld said:

Thank you! ❤️

Dear Phrannie51, thank you so much for your response and so sorry for my late reply. When I signed up, I didn’t check the email box for notifications and didn’t even know I had replies until signed in today. Congratulations on staying healthy! You have no idea how great it was to read about your recovery, to see that there is hope. Since my post, we saw one ENT surgeon who normally does our 6 months throat scopes, but he pretty much shut us down about the surgery because of the radiation. He said “after two radiations no one would go ‘there”.  I wish we didn’t ask him, he sounded grim. 

I am sure not every ENT doctor can work with the post radiation patients. Our ENT doc, he treats sinuses, allergies, sore throats, does throat scopes, but I imagine something like this is pretty scary and unknown to him. We live in Dallas, we have UT Southwestern here that we hear is a great place for complicated cases. The place is huge, you can get lost just walking around different departments. We were told that we need to see only head H&N surgeons that deal with cancers, not regular ENTs. We can also drive to MD Anderson, it’s 4 hours from us and my husband often goes there on business trips, usually comes back on the same day. But I am pretty sure that he would have no problem taking 5-7 days off to go anywhere if needed.

I have several questions for you if you don’t mind. Was it hard to get in? Did you already know what trial procedure to apply for or they offered different ones and you chose ablation? Did you have to mail all your records first, wait for their decision and then come to Boston? Or when you came there you had to do more tests to qualify? Also, did they tell you during your appt whether it would be successful or rather experimental, possible side effects from it? When you were accepted, did they give you few days to get there? How long did you have to be in Boston? Do you experience any side effects from it and how are you handling them? My hubby has such neck/shoujder stiffness from radiations that new side effects on that side is impossible to imagine. 

Sorry for all the questions, my head is spinning. Our local Dallas oncologist wants to start Keytruda saying no matter what we decide to do later it won’t harm him. Thank you again for your reply. It was pretty dark and scary in my head until I read your response. I don’t know you, but I am sending you hugs! 

 

Not an ENT, but a Head and neck surgeon AKA Otolaryngology surge

Hi MjsWorld,

I feel very bad for you and your husband. here's my added advice, but please listen to phranie51. She is the best. If I tell you something that conrtradicts what she says please listen to her. So I was diagnosed with my first reccurrence on 8/2/18 with Pet Scan and the diagnosis was finalized on 8/16/18, as Stage 3 primary site right tonsil and it has gone to right lymph node.

I just wanted to clarify something for you. I have both an excellent ENT and a very good surgery oncologist who will do surgery on me. I called my ENT fopr surgery d\first, but he told me neither him nor any other ENT is as qualified as a Otolaryngology surgeonn or head and neck surgeon for cancer surgery. I still don't know why some people in this forum use ENTs for complex cancer sugery, when an ENT that I know for 5 years and he is excellent tells me himself that NO ENT is nearly as qualified as an Otolaryngology surgeon for cancer (especially neck dissection) surgeries. I really hope your husban will get better with immunotherapy, and can only be baffled about your husband's situation for this thing returing right on or after 5 year anniversary. One last thing: Please do not go to any private dr., The best place is a teaching hospital: this means either in UT southwetern medical center or Baylor univerity medical center in Dallas-Fort Woth area. there mabe more, but I only know of these 2 in Dallas.

However if you are OK with going out of state, go to where phrannie51 reccommended.

If I can be of any further help please let me know.

Mehrdad

 

 

 

 

 

 

MJsWorld

phrannie51 said:

Me!! I’m on my third recurrence....

.....I’ve been on Keytruda for 14 months, and it kept me stable for 6 months....and kept everything stable except one node down by my collarbone. Mine too, was inoperabl, or so they said here where I live. There is a type of surgery being done as a clinical trial....so, where do you live and could you travel.....be gone for 5 to 7 days?  I had the survery done in April....and the Dr. who did the surgery said he considered it curative. 

Because of the placement of your hubby’s recurrence, I think this is something you guys should look into....

p

Thank you! ❤️

Dear Phrannie51, thank you so much for your response and so sorry for my late reply. When I signed up, I didn’t check the email box for notifications and didn’t even know I had replies until signed in today. Congratulations on staying healthy! You have no idea how great it was to read about your recovery, to see that there is hope. Since my post, we saw one ENT surgeon who normally does our 6 months throat scopes, but he pretty much shut us down about the surgery because of the radiation. He said “after two radiations no one would go ‘there”.  I wish we didn’t ask him, he sounded grim. 

I am sure not every ENT doctor can work with the post radiation patients. Our ENT doc, he treats sinuses, allergies, sore throats, does throat scopes, but I imagine something like this is pretty scary and unknown to him. We live in Dallas, we have UT Southwestern here that we hear is a great place for complicated cases. The place is huge, you can get lost just walking around different departments. We were told that we need to see only head H&N surgeons that deal with cancers, not regular ENTs. We can also drive to MD Anderson, it’s 4 hours from us and my husband often goes there on business trips, usually comes back on the same day. But I am pretty sure that he would have no problem taking 5-7 days off to go anywhere if needed.

I have several questions for you if you don’t mind. Was it hard to get in? Did you already know what trial procedure to apply for or they offered different ones and you chose ablation? Did you have to mail all your records first, wait for their decision and then come to Boston? Or when you came there you had to do more tests to qualify? Also, did they tell you during your appt whether it would be successful or rather experimental, possible side effects from it? When you were accepted, did they give you few days to get there? How long did you have to be in Boston? Do you experience any side effects from it and how are you handling them? My hubby has such neck/shoujder stiffness from radiations that new side effects on that side is impossible to imagine. 

Sorry for all the questions, my head is spinning. Our local Dallas oncologist wants to start Keytruda saying no matter what we decide to do later it won’t harm him. Thank you again for your reply. It was pretty dark and scary in my head until I read your response. I don’t know you, but I am sending you hugs!