Hello, I am a caregiver to my father who recently was diagnosed with HPV positive Tonsillar cancer. He is a stage 4 with metastasis to multiple lymph nodes and he as a distant spread to 2 of his bronchial lymph nodes as well. We know the news is not good. He is in excellent health otherwise and currently is undergoing heavy induction chemotherapy and will likely do radiation after his 3rd round of chemo is complete. When I look at the numbers they are not good, they say survival of a year on average. Does anyone who of anyone who beat this longer than a year? I know statistics are just that, statistics. I'm just looking for a little hope for a longer partial remission. And if it does come back right away, what options are typically offered? More chemo, clinical trial, etc?
Any advice is welcome.
Thanks so much,
Chris

There are many long term survivors. I recently met a woman who is 30+ years after going thru a battle with Stage IV OC.

Numbers are just numbers, it does NOT mean your father wont get thru this. HPV+ patients fare better than patients who have OC from smoking. So thats a positive thing in your dads favor.

We all fear a recurrence. But if it would happen you are already ahead of the game. You understand the medical terminology, you already have a team of good doctors, you have been down the road before so it is a little easier if you would have to deal with a recurrence. How a recurrence is treated depends on so many factors, the patient, where the tumor is located, Stage of the cancer, how the patient was already treated and where the original tumor was. Ive had OC 3 times and I am now 4 years cancer free after being Stage IV the 3rd round.

Try not to worry about "what if". Focus on the here and now with your father. I know its not easy to do but it really wont help to stress over "what if it comes back". Put your faith that you have found a top notch medical team to cure your father and once its over his cancer will be gone forever.

Hang in there, being a caregiver isnt easy. Take some time just for you once in a while to help clear your head. If possible line up some helpers to give yourself a break once in a while. Even if someone would drive your father to treatment once or twice a week it is a big help. Check with the American Cancer Society for volunteer drivers in your area to help you with this.

Best wishes with everything!

Chris,
I am a 4-year stage 4 survivor. I was negative for HPV, and was a non-smoker and light social drinker. My primary was on my left lateral tongue and I also had lymph node involvement. I will be 68 on August 11, which will also be the fourth anniversary of my last radiation treatment. There are many others who have made it a lot longer than I have. I am sure that they will weigh in here, too.

Thank you so much for your responses. This forum is a great place for people to connect, and I appreciate you taking the time to answer my questions.
My concern was the distant metastasis in the lymph nodes of the bronchial. Finding this meant that it was systemic and was of great concern for the doctors. Am I right in assuming that even though it is systemic he could hopefully go into a partial remission and remain in a partial remission for some time, if lucky?

Certainly if he were "just" dealing with HPV+ SCC, Tonsil Primary with local mets his treatment plan is well established and his expected recovery is more predictable but my concern, like yours, is the distant mets.

What do his docs say the chances are of killing the distant mets?

Where is he being treated?

What chemo are they using?

Did they do a biopsy of the lung nodes?

When did he start chemo?

What do they plan to do after the 3rd chemo, i.e., what will tell them to do the radiation part?

Hoping for the best.

Hi David,
Thanks for responding.
After his first round of chemo (Docetaxel, Cisplatin and 5-FU), he noticed the nodes in his neck go down considerably. The doctor said that was a good indication that it was working and that it was also hitting the nodes in the lungs as well. He is being treated at the Mayo Clinic right now. They did biopsy the lung nodes and that is why they are doing chemotherapy vs. surgery. They plan to do another PET scan after the 3rd round of chemotherapy and discuss at that point.

I am wondering if its possible chemo can get all the malignant cells in the lung nodes. I am doubtful that it can. I'm just looking for any good news, could this go into partial remission for 6 years?

I see a lot of posts with people that have gone into remission with stage 4 after surgery/chemo etc. but I don't see any posts for those diagnosed with mets to (I believe its referred to as locoregional or distant metastasis) that have gone through chemo and gone into a successful partial remission.

Any advice would be helpful.

Thanks so much,
Chris

First off remember none of us are doctors, just battle tested. Sounds like you are in very capable hands and you need to ask his MO the chemo question. Start a written "Question List" and add to it until your next appointment. I found I thought of a lot of questions driving to my appts so keep that sheet handy. Some here take a tape recorder to appts to replay when they get home.

Thanks David, I will take these questions to his doctor. Appreciate your time!
Chris

That's TPF Induction chemo, also called neoadjunct treatment, your father is getting. I had the same. If anything will knock out cancer that will. I only did 5 days, and it killed all my cancer in the tonsil, 2 lymoh nodes. Unfortionately thay say Induction chemo, does not last even though it kills the cancer or shrinks it, but will come back in less than a year a medical journal said. Mine did at 8 months, due to not having the real curative treatmant, which is radiation or surgery. I don't know about the bronchial nodes, and a good question to ask your doctor. There may be other procedures that can be used on the bronchial lymph node later on like cyber knife, introperative radiation therapy, even IMRT. Best wishes.