Blood test to detect HPV+ SCC - NavDX

Chillg8r

https://csn.cancer.org/discussion/comment/1711318#Comment_1711318

Don’t fret just yet, I had a random score of 4 one times followed by 4 straight scores of zero over the next year and that’s where I’m at right now. I’m obviously not saying that it doesn’t mean anything, just saying that it could be an aberration as mine was…..

MyVette

I am new to this board but not to it's topic.

In July 2024, I was (by accident) diagnosed with HPV+ base of tongue cancer, Stage II. I say, by accident, because I went to my ENT to check on a swollen Lymph node and nasal congestion, thinking it was sinusitis. The endoscope discovered a tumor on the right side base of my tongue. Both the doctor and I were somewhat shocked but it was what it was.

Since I had previously gone to UCSF in San Francisco for successful treatment of Prostate cancer 15 years ago (another fairly long story but will post if requested), we went there immediately for this occurrence. I mention this because the standard of care for this cancer can differ greatly from facility to facility. UCSF protocol was - 1) move a salivary gland to the left side to avoid most radiation and provide post treatment saliva, 2) no feeding tube unless absolutely necessary, 3) chemo-radiation with cisplatin for 7 weeks by a team/facility dedicated to ONLY head and neck cancers with 4) aggressive followup/guidance for swallowing and other radiation/chemo side effects. My primary facility protocol on the other hand was = no gland movement, mandatory feeding tube, chemo radiation with cisplatin for 7 weeks to be done by the same radiation department that handled ALL cancers and little to no followup.

Even though it involved an hour commute each day versus 15 minutes, the choice seemed obvious.

Results? While I can't claim no anxiety (I'm a worrier) post treatment, 3 month CT/MRI scans negative, 7.5 month endoscope NED, NavDx down from 3616 pre-treatment to 0. At present, I can eat anything I want with taste at 80%, minimal dry mouth, occasional neck stiffness and no other issues. Now, I fully realize that my NavDx score may. over time, go from zero to non zero, I am confident that, if it does, it will give me the best chance of both early detection and possible treatment. Certainly earlier than any scans I might endure and it may even reduce the number of scans over the long haul.

Cancer, especially twice, totally sucks but medical science has come a long way and an evolution like NavDx is proof that the longer you postpone the grim reaper, the more likely it will get better.

MyVette

As an addon to my post, since I was encouraged to not have a feeding tube (reduces swallowing problems post treatment) nutrition and eating enough is a big challenge. I lost 15 pounds (from 170 to 155) during treatment but many lose way more. Early on in the treatment, my Nutritionist suggested Kate Farms liquid nutrition. One small container contained over 500 good calories. While I eventually came to dislike the drink after 4 or 5 months, it did get me through much of the treatment. It goes down even the sorest of throats and did the trick for a long time. I usually drank 3 or 4 a day while eating as much as I could tolerate … after 2 weeks, everything tasted terrible but it was what it was. Still needed three 2 liter saline transfusions every week since I wasn't able to hydrate enough to flush the chemo out sufficiently.

Finally, just an important heads up … if you end up having to take any pain meds beyond Tylenol during your treatment, make sure you take a stool softener on the very first day to take the pain meds. You will thank me later. The pain med induced constipation you will suffer through if you don't take the stool softener is excruciating. My docs prescribed the softener but just said take it if you need it ….. WAY too late!.

wbcgaruss

Hello, MyVette, and welcome to the CSN H&N discussion forum.

As we always say on here, sorry you need to be here, of course, because we don't wish cancer on our worst enemy.

I see you have been through the mill with base of tongue and have received the standard H&N treatment of 35 radiation treatments over a 7-week period with chemo mixed in.

You have survived one of the most Brutal treatments of any cancer treatment, congratulations.

Many on here have gone through this protocol over the years, and all have made it through, though it is surely a rough ride.

I, too, had the mandatory feeding tube before they would start treatment, and since in my case, I was going to get some extra chemo I also had a port.

The feeding tube was mandatory, the port was optional, and my choice, but highly recommended.

So I chose the port since my care team recommended it, and their explanation convinced me.

I figgered since I was in a life-or-death cancer situation, it was definitely time to listen to the pros and not second-guess them. I am sure glad I did. I am sure glad I had both options. I definitely needed both as I couldn't get anything through my throat for about 3-4 months. So the feeding tube saved my life and we soon became fast friends when swelling from radiation closed up my throat. And I am so thankful for the Bard Power Port, what a vein saver it surely was.

Also, like you, I have had cancer more than once, as have some others on here.

I have heard of Kate Farms for weight gain. At any time I needed help gaining or maintaining, I used Boost VHC (Very High Calorie) 530 calories per 8 ounces, but I will check out Kate farms because every now and then I need to gain a coupleof pounds to keep a weight buffer and not weigh too little..

I see, like many of us, you had the difficulty of constipation as a side effect of the meds you were taking. Some of us have also suffered diarrhea, upset stomach, throwing up, etc. It can be a real balancing act to get enough of what you need and keep the side effects at bay.

Thank you for your story and for joining the group; it is appreciated.

I certainly hope you had a good recovery with few side effects.

Our Motto Here Is NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

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.

just4jme

We manage to avoid the feeding tube the wanted my husband to get.

I came up with my own concoction of…
- Vanilla coffee creamer (50 cals a tablespoon).
- Vanilla ice cream, Costco's Kirkland brand has a ton of calories.
- Whole milk

Sometimes I’d use vanilla protein powder.

Mix it all together and I could get him to drink a shake or 2 a day at roughly 1000 calories each.