New to group, husband with nasopharyngeal CA

Hi @barbaraek, how are you doing? sounds like it has been very difficult. I am one of the moderators here and have messaged the other members of the head and neck cancer group to see if they can share their experience with you.

Thank you! appreciating any and all support 🙂

Hi Barbaraek:

I was 56 when I was diagnosed with a nasopharyngeal-type in my sphenoid sinus. Took 5 docs over 9 months to finally diagnose me.Like your husband, surgery wasn't an option. I had six weeks of radiation (4 weeks 1X per day, 2 weeks 2X per day). I also had one round of chemo the day of my first radiation treatment and a second round about 3 weeks later. Don't make any judgements by the treatment plan - the oncologist makes the decision based upon location, type, staging, as well as his/her own experience in dealing with this type of presentation.

Not sure how far your husband is into treatment but I think you're down the road a bit. The treatment is rough - especially the radiation and those side effects build both thru treatment and accumulate about 4 weeks following end of treatment. Then recovery can begin.

You didn't mention if he was on a PEG tube. Most important is nutrition.He is going to need at least twice the calories he would ordinarily consumer - the treatment ramps up the metabolism. So whether he is on liquid nutrition only, or both liquid and solid food, he must get down at least 2,500 calories a day. Keeping you weight steady is most important to recovery. He might lose - I lost about 40 lbs - but stay at it. Also hydration - line up about 3 bottles of water a day and make sure he gets them all down.

There's a lot of ground to cover. Nutrition, medication, side effects, and recovery. Lots of stuff to discuss and hard for me to cover it all in this one post. Please continue to reach out to the group.

You also have a very valuable partner in SPOHNC - Support for People with Head & Neck Cancer. They're a national organization that also has a "buddy" system where they take all of your husbands info regarding diagnosis and treatment, and then match you up with another survivor who has gone thru the same adventure. They also have chapters that meet monthly around the US - I happen to facilitate one in Long Island, NY.

You can visit their web site for more info - SPOHNC.org. Give them a call - there is no charge for their services. The groups provide incredible support and street wisdom on dealing with both treatment and recovery. Tell them Jeff sent you! 🙂

Stay in touch - it's a tough road but here I am 8 years later and doing just fine! 🙂

Wishing you and your husband a quick recovery and long lasting health!

- Jeff

Jeff,
Thank you so much for reaching out. I can't tell you how wonderful it was for me to read that you are 8 years out and doing well. We have followed a very similar course of treatment...35 rads in 6 weeks with concurrent chemo (Cisplatin). We are now just starting adjuvant chemo 3 cycles with Cisplatin and 5FU. Yes indeed, he does have a PEG. My husband was pretty lean to begin with (5'7" - 160 lbs) and lost about 14 pounds, but has gained back 4 with the PEG. Compared to others the weight loss hasn't been dramatic, but he's not taking anything by mouth yet..and probably won't for a while.

There is a SPOHNC group here that is on hiatus in August, but we will look them up in September when their meetings resume.

My husband is a surgical oncologist himself (liver/pancreas) and the toughest thing for me has been keeping him positive when he looks at too many statistics. He is after all a scientific kind of guy. Being able to share successes like yours are exactly what he needs to hear for the moment.

Barb

P.S. Jeff - did you do your treatment at MSKCC? that's where my husband trained as a surgical oncology fellow. Lots of good docs and hospitals in NYC.

Hi Barb:

Sometimes doctors can be the worst patients. 🙂

No one can deny the Internet (or should I specifically say Google) is a great resource for information. Use ito find out about the disease, the geography of the body, exactly how cancer actually operates.

But don't use it to look up statistics because those statistics aren't yours - they're someone else's. They don't have your statistics. Remember that cancer is a highly personalized disease - it's as unique as the patient himself. Where those statistics come from have nothing to do with this particular patient. Even a scientist can understand how misleading statistics can be.

Cancer itself carries a heavy mythological weight. But remember that cancer is a disease - and it's a treatable disease. i can introduce you to plenty of people who can back that up. 🙂

Looking at the weight issue, it's great that he can keep his weight up. I don't know how far out of treatment he is but depending on where the radiation hit, it might take about 1-2 months more or less before he starts eating solid food. But do keep the swallow reflex up - small bits of food that he can get down or even swallowing sips of water. He must take small bits by mouth to keep up that reflex. Heck, when I started eating solid food again, i lived on sunny side up eggs. They were easy to break up in my mouth and they were "slippery" enough to get down. So choose the things that work. It will take time.

I still eat eggs by the way - but now I prefer omelets. 🙂

Tell him to - and make sure does - pay attention to oral care. Keep brushing teeth and if possible, use a non-alcohol based rinse. I use Crest Complete since it has a fluoride component. Because of dry mouth and lack of saliva, his teeth are at risk for cavities and possible chipping. Who know that spit was so important?

When he feels he can, get him up and walking. If he can keep up some daily exercise - even walking - the recovery will move along quicker. But don't push it. Radiation and chemo are incredibly abusive. Give the body time to recover. But do give it the tools to help it rebuild.

There is also a wonderful book out there I recommend to people - How To Be A Friend to a Friend Who's Sick, by Letty Cottin Pogrebin. There are some great tips to give to people when they ask, "what can I do". There's also some great advice for the caregiver. You carry a lot of weight and responsibility. You also need to take breaks for yourself. Your health and outlook are just as important as your husband's.

If there's any other way i can be of help, just write in. Questions will come up as you move along which is why I mentioned SPOHNC and their matching system. Sometimes a good "tour guide" can help you navigate the landscape.

Onward we go. More daylight to be had! 🙂

- Jeff

PS - My treatment was at Beth Israel in NYC. The surgeon who finally diagnosed the disease felt that would be the best option for me and he also gave me a specific doc to meet. He was right. 🙂