After discovering a lump on his neck, my husband had an ultrasound, CT and tongue biopsy. He was diagnosed with base of tongue cancer, stage 4a. Cancer is also in the lymph nodes in his neck. Pet scan is clear. He's in good health otherwise and doesn't have any pain or discomfort. We've seen the radiologist and oncologist. Treatment options are an aggressive chemo alone with 3 chemicals to shrink the tumor followed by radiation/chemo. The other option is chemo and radiation together. Does anyone have any experience with this?

Hi Jenkensmom - Welcome to the best place to be for all the latest information and and compassionate help from people who've been where you are. My son had SCC (squamous cell cancer) under his tongue, had surgery followed by radiation only and doing terrific almost 6 years later. We didn't find OCF until he had already started radiation so it's good you found this forum early in your husband's treatment. I'm sure others will be along whose experience more closely resembles that of your husband and can relate to his experience.

This is exactly what my husband had. We did the chemo first. Cistplatin, Taxotere and 5FU, then we did Erbitux with the radiation. Hit it hard the first time around, it might save having to deal with it again. It's hard, but he sounds like he's healthy like Kevin was so he should be ok. He WILL lose weight though, so make him start eating anything and everything now.
Please private message me as you go through this if you want. Being the caregiver is VERY hard and it will be good to have someone who has just done it. Although, this site is filled with amazing caregivers and patients and we ALL know, so here is ok too. Just please reach out. I didn't find the site until our last week of radiation and by then I was a wreck not having anyone to talk to that had been through it.
Please keep in touch with us. We are here for you.
Blessings,
Kathy

First off I would get another opinion from a Comprehensive Cancer Center (CCC) and see what they recommend. Chances are high (70%) that his cancer cells would test positive for HPV like mine and tons of others with that same presentation. I would request the test. Most with his presentation are recommended to get concurrent chemo, usually Cisplatin and rad. The Cisplatin is usually administered in 3 doses (I call that the Big 3 Bag Method which I had) but some MO's are switching to a weekly smaller bag method which seems to lessen the adverse side effects from the Big Bag method according to posters on this site that have had the 6 weekly doses. You are wise educating yourself and you are fortunate to have found this site pre Tx as it will be of tremendous help from now on.

Received the final pathology today from Monday's biopsy. Confirmation of SCC/HPV + BOT stage 4. The team is recommending chemo using Taxotere, 5-FU and Cisplatin administered by pump for 4 days then off for 2 1/2 weeks. He'll have have 4 treatments of this routine in hopes of shrinking the tumors in the nodes. This will be followed by 7 weeks of radiation\chemo. Radiation will be 5 days per week for 7 weeks.

The other option is to do Cistplatin only with radiation for 7 weeks.

Any experiences with either? The 1st option seemed to work with Kathy's husband (see above reply)

Most of us here have had cisplatin. There are also some who have had the combo you mentioned. I would suggest getting a second opinion if you have any reservations about your husbands treatment plan. There are several top cancer centers which may be able to help you sort out which solution would work best.

Everyone is different and will respond in their own way to medications and treatments. What works for one may not be the best for option another patient.

Since his cells tested + for HPV I would opt for the least agressive Tx (of the 2 mentioned) so I would lean towards the concurrent Cisplatin/rad and would also ask about weekly Cis vs the 3 Big Bag Method. I was also Dx'ed a Stage IV BOT HPV+ SCC but 6 years ago and had the 3 Big Bag method plus rad and believe me I feared the Tx would kill me waaaay more than the cancer. Since studies have proven that HPV+SCC responds better to the conventional Tx (Concurrent Cisplatin and radiation)vs HPV negative SCC I personally think the current Tx protocal is an overkill and puts HPV+ OC patients thru more than need be. That's why I would opt for the lesser of those 2 options given you. Chemo is poison, plane and simple. JM2C's

Hi, Diane - what is the size of the primary BOT tumor - will either be a size in CM or tumor T stage.
Maria

Hi Diane

Your options are almost identical to the ones Alex faced in 2010. The Head and Neck guidelines list both treatments as options for stage 4a oropharyngeal cancer. HOWEVER the induction chemo is controversial as even the experts cannnot agree.

For us, we threw the kitchen sink at it and took the induction chemo because we wanted to minimise our chances of recurrence. Downside is more severe, lingering side effects and longer time to recover.

First round of chemo had an immediate effect for Alex and by round 2 the oncologist could not longer see or feel the tumour. This complete response may well have occurred with chemo/radiation alone, but we will never know. I DO know that on the strength of Alex's response the doctor started ordering HPV tests for his other oropharyngeal patients - believing that Alex's response had something to do with that.

Would we do it that way again? Hard to say. I think Alex might say no, and I would say yes. Alex certainly suffered from some very severe and long term effects including 12 months on a PEG, ongoing issues with thick stringy mucous and long term battles with mucositis. He struggled to eat with bloating and/or nausea affecting his ability to get all the calories he needed for about 2 years and still has is days. We just don't know if this was the effect of the chemo, the radiation or even the effect of leaving a hole created by destroying a 4 cm lump of malignant tissue that obviously did damage of its own whilst it was sitting there.

I often wonder if we went too hard but then remember that if we had gone the other way and the cancer had come back, our distress around a recurrence would have been far greater if we hadn't tried everything... Of course if we had gone the other way and the cancer hadn't come back we would have been in a better place than we are now.

I hasten to caution that Alex had a particularly rough time and others seem to recover faster than Alex has, so you should read everybody's stories to get a balance. I believe that part of the problem for Alex was that he was already underweight at diagnosis and had been procrastinating about seeing the specialist for a couple of months putting him behind the eight ball before we started. In addition, he suffered a lung collapse on day 4 of chemo which complicated his treatment and recovery time. In addition to battling the cancer and the chemo, his body was also battered by major surgery to repair his lung.

The reality is that only you, your husband and your doctors can make the choices with your husband getting the deciding vote. To that end, make sure as David says that your doctor is a good one with lots of experience with this type of cancer from a CCC.

What they are recommending is exactly what we did. It was hard, but not awful. Kevin hated the 5FU because he was sick and knew the stuff was still pumping into him. The other you got and left. The 5FU you bring home and wear on your belt loop. It was awkward. He had to resist the temptation to pull it out!!
I hear what David is saying about it being overkill, but, I don't know. Maybe overkill was what he wanted? Kevin I mean. We trusted our Dr and it's what he recommended so we did it. Just FYI though, cistplatin has damaged Kevin and David's hearing. One of the side effects.
Kathy