Our Journey and Treatment for Base of Tongue (SCC) Cancer

Swoosh13

Hello All,

I promised my husband that when he finished his treatment for base of tongue cancer (left side) with 2 left side affected lymph nodes, that I would try to pay it forward to all those that helped us out. To my new friend MarieO, who I found on this board whose husband had a similar journey in 2022, many many thanks.

In late April 2023, my husband told he felt a lump on the left side of his neck below his ear. As I had something similar in 2019 that needed to be biopsied (thankfully benign), I took it seriously. But we had to wait until May 30 to get him into my ENT as he was a new patient. ENT sent him for an ultrasound. Took a full week (over Father's Day in June) to get the results. Because it took that long and we were not happy with that ENT, we found a new ENT associated with our family doctor's office. This was end of June. He sent the scope down his nose/throat and although he didn't "scare" us, he took it seriously. He set my husband up for CT scan and biopsy the next week. Got first CT results that same day (through his My Chart) and I KNEW it was malignant. However, at that point we did not know if it was HPV + 16. Two days later he had the biopsy and it WAS HPV+ 16. So, for me who had already read so many positive stories on this Board, that helped. We still had to wait one more week as his new ENT was on vacation over the July 4 weekend. Got the official news July 6 that it was Squamous Cell Carcinoma (left base of tongue) with two rather small involved lymph nodes also on the left side. He also said "good news" that it was HPV+ 16. Next was the PET scan set for July 19 and all clear (nothing other than what we already knew about). By the last week in July, on 2 separate days, we met with the 3 doctor tumor board at our local cancer hospital (about 35 minutes from our home). First the surgeon told us Stage I (based on size of primary being about 1.4 cm and only on left side of tongue) and the small size of both lymph nodes also both on left side. She said no to surgery as he would be an ideal candidate for concurrent radiation and chemo with what she said had a 90+% cure rate. At that time I asked her about doing the NavDx blood test. She said they do not do them, and "wouldn't know what to do with the results." Also met with his soon to be Hematologist and Radiologist. 7 weeks (35 Rads) and either 3 large or 7 weekly doses of chemo (Cisplatin). One week later we went to Northwestern in Chicago for a second opinion. Again 3 dr. Tumor board meetings all in one day. Main reason we went there at all was to try to get him for radiation with their Proton radiation, but no go, as they were booked out to mid-October (and this was on August 8). But surgeon there also concurred. Said she's "love" to do surgery, but if she couldn't get clean margins, he'd end up with radiation and chemo anyways. That kind of sealed the deal for us. Also, we asked their Hematologist about doing 3 large or 7 weekly doses of Cisplatin, and he said their protocol was ONLY doing 7 weekly, so that also made up our minds. Also, they DID the NavDx blood test, and our insurance covered it, and the amount of DNA it detected at that time was very low. However I forwarded a copy of it onto our local Hematologist.

August 22 his CT/MRI for making the mask for radiation. He was like "why didn't you tell me how this was going to be?" He's a bit claustrophobic. But once he started with actual radiation he had no problem. It was IMRT BTW. He started treatment the day after Labor Day (9/5). First chemo 9/6.

He did fairly well the first 3 weeks of radiation until eating bacon and hamburger tasted bad to him. By week 4 I think pretty much everything started to taste off/bad. However, he never stopped eating. Doctors told us at the start we do not do prophylactic feeding tubes (he never needed one). Kept with soups, mac 'n cheese (did you know there is 1100 calories in a box and he was still hungry so he could eat a box). Also, going into this he was Type II Diabetes. His endocrinologist was at another hospital, so coordinating the care between her and his cancer team was kinda up to me. On chemo days he got a steroid (Dexamethosone) and also for the next three days after infusion. Which WILL jack your blood sugar up and it did alot. By the following week when he always had labs on Monday mornings, his Hematologist asked why he was over 300 BS at 9:00 a.m.? Eventually his endocrinologist added in some insulin but just for those 4 days per week (otherwise he only took 2 oral meds for Diabetes). Fast forward to October 1 (Sunday night). He was outside with our dog on patio and called me out. Said his right leg hurt like he pulled a muscle (PLEASE DO NOT IGNORE THIS SYMPTOM!!) By Monday morning he got dizzy in the shower prior to us going for our usual Monday lab/dr appts. Then he went out to walk our dog. Called me outside (glad he had his cell on him) and he was laying on the road with our dog on the leash next to him. He got so dizzy (low blood pressure, which he tends to run low anyways) he sat down, then laid down and couldn't get up. I brought my car over to take him to ER and he was so weak he couldn't get in. I called 911 and they took him to the nearest ER affiliated with our cancer center. Should have just gone right to the major cancer center where he'd been having his treatment. We spent 8 hours there where they did all labs (he was extremely dehydrated and had low BP) and he never told me the prior week he had diarreah (which I did buy Immodium AD but I didn't know he should of taken it). I told them his leg was hurting. They never took his shoes off or put a gown on him to check his leg until 4-5 hours in. Never did an ultrasound of that leg (which would have confirmed he had a blood clot in the vein in the back of his calf and needed a blood thinner ASAP). They wanted to hold him there for up to 48 hours to get a bed at the main hospital, we both agreed he'd be better at home with me.

Called his Hematologist's team next morning (10/2) and by 10:00 both me and the nurse were fairly certain he had a blood clot. I drove him to the main ER and he got right in (someone took it very seriously). Sent an Ultrasound Tech in and within an hour the ER doctor confirmed the clot. Started him on blood thinners and by 10:30 that night he was admitted for 2 more days for observation. Sent us home with Eliquis (an oral blood thinner with no dietary restrictions or lab work necessary). So by this time he missed 2 radiations and 1 chemo that week. BTW if you miss any they will just tag them onto the end of treatment.

He tolerated the Cisplatin very well. Virtually no nausea. Only the uptick in his blood sugars, as I mentioned. They did a baseline hearing test and 2 weeks into treatment another one, nothing changed. We missed the one while he was in the hospital but thankfully 5 weeks out of treatment now no hearing changes. Nor any neuropathy. That was one of the other reasons we chose 7 weekly vs. the 3 large chemos (told chances of hearing changes/neuropathy might be less with 7).

His last radiation was October 23 and last chemo October 24 so he is 5 weeks post treatment. He was hugely reluctant to drink the protein shakes (YUCK) so I'm like OK then maybe a root beer float, etc., etc., rinse repeat.

He lost nearly 30 pounds but he had put on 7 for padding before it all started. We were told by his Hematologist's PA (who we loved) it might be 2-3 mos for taste to come back. When we saw his Radiation Onc on Nov 13 for first F/U, he said you should not have ANY taste yet. When I told them he had gained 13 pounds in the past 2 weeks because he was hungry and he was already at 30% taste back (particularly bacon and ham for some odd reason), they couldn't believe it. We love going out to breakfast so that was his breakthrough in gaining weight and tasting different things. At first eggs, anything bland were great (and the bacon), LOL), had a cheeseburger on Sunday said it wasn't "bad." So as of this weekend he's only down 10 pounds from start of treatment. Today he told me while eating breakfast at one of our favorite breakfast places the slab of ham he was eating tasted particularly good (I mean then of course I asked him about everything he was eating) and yes, now about 35% taste back at 5 weeks post treatment. Also, during treatment I bought him a piece of carrot cake (his fav) and he said it tasted like shaving cream. Brought a piece home from the restaurant this morning and he tasted it this aft and he was like dang, it actually tastes like carrot cake.

I might mention, his Radiologist said he would get the Sahara Desert of dry mouths by Week 4 of radiation and he never did, nor the gummy mucous mouth. So I do believe that's what's helping the taste to come back. Also he's good about drinking a ton of water. But my Gosh he had the worst case of Mucositis and he refused to take any opiates, only extra strength Tylenol. By one week post chemo it had cleared up for the most part.

We are so very blessed to have found this group before his treatment. Although (other than the blood clot incident) I personally pretty much knew what he "could" get, but he basically told me not to tell him as he would experience things as he went through his treatment. In the end he only had 33 days rads (not 35) so I think they charged him with a few more Greys as he could take it.

Russ, so grateful you were there for us (and everyone here) for all questions. My husband had a part-time job (he's retired otherwise) before this and his boss wants him to come back in the Spring for 2 days/week and he's already looking forward to that.

We had a quiet Thanksgiving but much to be thankful for. 12/14 another F/U with Radiologist, then January 8 Labs/Hematologist/Radiologist and shortly thereafter his first PET/CT scan. Praying for an all clear then.

So looking forward to seeing our grandkids in person again (they're grade school age and we didn't want him to get sick during treatment) so FaceTime it's been. But Christmas isn't too far away and he's telling me each day he feels a bit better.

Glad I could tell his/our story, last year at this time we sure did not know what this was. Pretty much every doctor we met prior to treatment said was the swollen lymph node your only symptom and he said yes, and they said, yes that's how it presents in alot of cases. I'm just glad he took it seriously enough to tell me when he first felt it.

If anyone has any questions about what my husband went through, feel feel to reach out!

Swoosh13

Gail

wbcgaruss

Dearest Gail and husband, so glad he has made it through this difficult cancer treatment and has come out the other side in good shape. Thank you so much for the detailed report I am sure there are going to be others who benefit from your account of your husband's journey and treatment. Praying for all clear scans ahead.

NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

We celebrate with you...

MGC

Congrats on your triumphs over this evil nightmare. Your story is not uncommon and the treatment is very common.

I had stage 4 SCC right tonsil and BOT in 2010. Multiple lymph nodes involved on primary side all the way down to shoulder. Same protocol- 6 weeks of rads and 3 Cisplatin treatments over 6 weeks. No surgery. Unfortunately after the 1st 2, Cislplatin treatments my hearing was trashed so they opted to skip # 3. Had all the regular side effects like dry mouth, lousy taste etc for a couple years but all in all cancer free and did well for years. Sadly, the radiation started catching up with me after 5 years when my hypolglossal nerve on the primary side started to die. little did i know what a journey that would start. I now wonder if surgery for the tumor removal at the onset would not have been better but I will never know. My treatment team at Stanford claimed that 1 in 5 suffer this side effect although I have found very very few. Over the following years the dry mouth improved greatly and taste buds are 100%. Hearing still ruined for certain frequencies. Fast forward 9 years after treatment I developed a deep tissue infection in my cheek as a result of my poor tongue coordination and food particles creating a lesion inside my cheek. The doctors were dumbfounded and couldn't figure out how to deal with it until it was almost to late. They were sure i had cancer again in the jaw or somewhere. This was not the case. I had multiple scans and biopsies over a 6 month period and although my head would light up on the pets there was no cancer. Finally, I could not open my mouth except to eat a pain pill and my face was swelled huge. They did a radical neck dissection and I have been on a feeding tube ever since. Almost 5 years now. All this for an infection!!!!

They had planned to use part of my leg to replace my jawbone as they were sure I had cancer again but I didn't so they did a radial arm free flap operation and sewed a piece of skin from my fore arm inside my mouth where they cut out the cheek infection supposedly. So here I am 14 years out and still NED and health is really good from shoulders down lol. One thing I can recommend for sure that the doctors do not place much emphasis on is neck exercises and neck movement and skin treatment. ALL three are imperative for the reduction of long term problems related to radiation. The old saying of if the cancer doesn't kill you the cure will and in the case of radiation it is exactly true. I have tried tons and tons of things over the years and one thing I have learned is you can not undo the effects of radiation. That's why I stress the stretching and exercising so much. I hope this reaches people who are early in their journey. I know if I had stuck to better exercise and stretching regime it would have helped.

Good Luck

Mark