Immunotherapy for Squamous Cell Carcinoma, base of tongue

jkinobay

Brief recap: 2007, SCC left tonsil/lymph gland, minor surgery, 35 rads, 7 Cisplatin Chemo, still all clear last PET 3/2025. 2022, SCC right tonsil, TORS for tumor, RND of the neck. No chemo, 30 rads. PET 2025 shows reoccurrence near base of tongue. Surgery and radiation not an option. Waiting on appt to discuss immunotherapy vs chemotherapy. I am a 75 year old male.

Anyone out there with immunotherapy comments, advice, cautions, etc.?

Appreciate your imput

Jim K

LuvnTN

Hey Jim, I just saw your post… I have some insight into immunotherapy (Keytruda) since I have been doing every-three-week infusions since Dec 2023 (so, going on about 1 1/2 years). From what I have learned, immunotherapy "hyper activates" (words the doctor uses) your immune system to fight the cancer cells using your own body's systems. The upside of this is that it is not like chemotherapy with all of those negative side-effects… and some people respond very quickly (like after only 2-3 infusions); and, as a result, is considered "curative" for some people who respond well. The down side is that, because it hyper-activates your immune system, you own body's system can begin to attack itself. Meaning, if there is any existing condition that your newly-hyper-activated immune system identifies as a "threat", it gets attacked. For Keytruda, for instance, long-time smokers with existing lung inflammation/damage from the smoking, had serious reactions to the drug. In some cases, it can also create potential autoimmune reactions.. which just means your body's immune system is in overdrive… attacking parts of itself. The doctors do a pretty extensive history check to spot any potential issues prior to administering. In my case, I have not had any side-effects (other than maybe some extra tiredness sometimes).. other than that, my infusions haven't resulted in anything worth noting. It did "fry" my thyroid.. and, now I am on thyroid medication (and this is a common thing for people on Keytruda over a certain number of months). But, so far, while I am not in the rapid-responder class, things are looking really good on blood tests and scans. I hope that helps.

wbcgaruss

Good update and info here LuvnTN, thanks for the info and praying you continue to have success and soon be pronounced NED and Unremarkable.

Wishing you the very best…

Take Care, God Bless

Russ

jkinobay

https://csn.cancer.org/discussion/comment/1722775#Comment_1722775

Thank you for getting back to me. So far you are the only one so I'm guessing immunotherapy is not common on this particular board.

Sounds like your experience has been a good one, all things considered. I'm 75 and this is my 3rd bout of throat cancer…basically base of tongue now. I have been NED on my left side since 2007. But I had a new cancer pop up on my right side in 2022. We thought we knocked it out with IMRT and TORS/RND. But, now a reoccurrence. I can't have any more surgery or radiation so immunotherapy is my last, best hope…………and I'm just not ready to throw in the towel.

Thanks again, I feel better and more confident with your imput. Take care and BE WELL.

I'll keep you posted and may have follow up questions.

Thanks so much

Jim Kennedy

LuvnTN

https://csn.cancer.org/discussion/comment/1722776#Comment_1722776

thanks Russ! God bless you!

summer_1004

Thx for sharing. my best girlfriend was diagnosed with base of tongue cancer scc stage 4 non hpv 1/25 - went through seven rounds of chemo/rad, which unfortunately only helped her lt side, rt side worsening now shows in lung 8/25. She is not a candidate for any surgery, pain is off the chart, about 70lbs, can’t manage her apartment, and she won’t allow me or her daughter to any of her appts. we’re going off her words which she’s very confused about. She started Keytruda 2 weeks ago so we don’t know what to expect. I’m hoping for the best but expecting the worst. No eating, had peg tube removed her decision (too much hassle she said). Any thoughts on what to expect? I’m clueless about cancer but trying to learn online. Wish she’d let me in. Bless you all ❤️

jkinobay

Very sorry to hear her story. A tough situation for all involved. And Bless you for being her advocate. Good on you.

My understanding so far on Keytruda is that 80% or more tolerate it very well. If there is an adverse effect it usually appears early on. I take it she is on a 21 day cycle? I've been told that it should show results by the 4th or 5th cycle. It has a high success rate for SCC. Hang in there a bit longer and we'll hope for encouraging news. I have completed 5 cycles and fortunately not a single adverse reaction.

As for her personal dealing with this she has to let somebody in or it will only make matters worse. One of the most powerful weapons for healing is a positive attitude. She cannot maintain that by herself. If she wants to beat this she has to understand it is a team sport. On the other hand if she has lost the will or desire to fight and is not interested in fighting, then you have to respect that too. Surely she has something or someone that she's willing to fight to survive for. Thankfully you are there for her and at the top of that list. But you can't do it alone. Just don't take no for an answer. Insist on your involvement and support in all ways possible. You'll turn her back from the darkness she finds herself in. I know it.

God Bless you for trying and God Bless her in her battle. Please keep me posted.

summer_1004

I believe she got her third infusion today.. is that even what it’s called? The Keytruda. treatment. I can’t tell you how much that means to me taking the time to write this. You’re the first person I’ve reached out to since I begin this journey with her right after Christmas. Your words bring me hope, comfort and encouragement tonight. I just got a text from her saying she wants me to come over tomorrow to share some things with me. She really wants to live. We were supposed to move to Florida together this year. Time will tell. Thanks again. I have tears in my eyes because you took the time to care about somebody else. Seriously. Grateful for you all. Summer

jkinobay

Yes, the treatments are called infusions.

That is encouraging news that she may be letting her guard down. Take advantage of that change in momentum as much as possible. I hope she knows how lucky she is to have you fighting along side. And make no mistake this is a war that will only be won by fighting.

And like I said it requires a team effort. Always remember you are just as an important member of that team as any of the medical professionals.

Hang in there. Things will get better.

Rakker

Two time cancer survivor here… it takes a team, even if its over the phone, text message, emails… get every one you and she know involved as a support team for you, the potential care giver, and for her the cancer Warrior.

All the luck and keep on keeping on.

jkinobay

https://csn.cancer.org/discussion/comment/1724572#Comment_1724572

Outstanding counsel from a seasoned veteran. I can relate. I've danced with the Devil 3 times since 2007. Having bilateral biopsies tomorrow. Hoping this is not a preview of #4.

Good luck to all and God Bless

jkinobay

DoctorJohn

I've been having Keytruda infusions every six weeks for over three years now, without any issues whatever. I live in an RV and have lived "on the road", therefore six weeks rather than the three-week infusion appointments worked better for me. I developed an avocado sized tumor on my neck that was cancerous. After it was surgically removed, I underwent over 40 rounds of radiation therapy and five chemotherapy sessions. Subsequent MRI, CT, and PET scans revealed that the cancer had metastasized to my T1 and T2 vertebrae. That’s when I began immunotherapy infusions, which I’ve now been receiving every six weeks for the past three years.

Initially I was told that I might have between 3 and 6 months, it's been over 5 years. And amazingly it has not been tough. Other than worry and uncertainty, physically I've had none of the illness or pain that I had anticipated.

Thank goodness for the VA and good drugs (and maybe a little luck too :)

wbcgaruss

DrJohn, I am so happy for you, despite all you had to deal with, your story shows there is always hope out there.

That sure looks like a mighty big tumor.

Some people have a very good response with Keytruda, and you are one of them.

By the way our motto here is NEGU (Never Ever Give Up)

I would also recommend you check out the Superthread at the top of the head and neck home page there is loads of information in there with links and you will find it helpful.

Wishing You The Best

Take Care, God Bless

Russ

jkinobay

https://csn.cancer.org/discussion/comment/1724543#Comment_1724543

So, how is she doing? Did you move to Fl? Hope she is already showing improvement. Take care and God bless.

jkinobay

https://csn.cancer.org/discussion/comment/1725361#Comment_1725361

Just your amazing story tells us what an incredible Cancer Warrior you have become and that's why you're winning the war..…one battle at a time. Praying for your continued success. You are one tough hombre.

DoctorJohn

https://csn.cancer.org/discussion/comment/1725370#Comment_1725370

Thanks really appreciate the support and your comment.

DoctorJohn

Thanks really appreciate the support and your comment.