Hello, new to this so bare with me. My husband who is 60 years old was diagnosed June 2013 with stage 2 tonuge cancer. the tumor was at the base of his tongue. he had surgery to remove the tumor, developed thrush was hospitalized for a week. Then had a neck section done in July removed lymph nodes on both sides of his neck. August cancer free. Went in for his 3 mo post check and was complaining of an ear ache and hard to swallow. He has now been diagnosed with stage 4a tongue cancer and is in his 2nd week of radiation. he will have 5 more weeks of radiation 5 days a week and 2 more 6 hour chemo treatments in that 5 weeks. Each day it gets harder and harder for him have an intrest in eating and i feel i'm "nagging" him. He's starting to get depressed also. what a long road ahead for him.

Sorry you both are having to deal with this.

Was his cancer tested for the presence of HPV?

Where did it come back?

Where is he being treated?

I assume the chemo is Cisplatin? If so watch out for "ringing in his ears". If he starts to hear ANYTHING strange or different especially after the 2nd bag, tell his docs immediately. You may even want to ask for a hearing test now to establish a baseline just in case.

Find a recent blood test and record his TSH level and keep that for future reference if needed.

Do get him to consume a ton of calories and water each and every day from now until well past his first year of recovery.

He will lose his taste, if he already hasn't.

His worse time will most likely occur starting around the 4th week of Tx and continue thru his 3rd week after Tx ends with the worst of that coming after Tx ends.

I only mention this because it's common among us and I don't want either of you to think this is abnormal. We can all react differently so hope for the best.

This site will be invaluable during this Tx and beyond so please keep posting and reading. You as the Caregiver, which is not a nice job to land, will be constantly tested and you may have to become the nurse from hell from time to time and he will most likely NOT appreciate it until after his treatment is weeks past so just be prepared.

Hi Robin,
Welcome to OCF, the greatest place of 1st hand insight to oral cancer. Sorry about the recurrence, the worst scenario for cancer survivors. At this point, all you can do is take each day as it comes. Plan on him feeling pretty crappy until about 4 weeks post chemo/rads. That is a reasonable target. Some recovery quicker some take longer.

Watch three things and make sure none of them go unattended or get away.

HYDRATION - NUTRITION - PAIN MANAGEMENT

Simple yet hard to stay on top of. Doing your best on these will get him through as best as possible.

Good luck,
Don

Robin, welcome to OCF! Im very sorry to hear about your husbands recurrence. Of course he is upset, anyone would be. The bad part is this will only get harder as time goes on. Its a very long road ahead.

You certainly have your hands full. At some point you might have to put on your nurse hat from heck and get your husband to face reality. This is no walk in the park and he must get onboard and help with things he has control over (his intake and attitude). I would start by asking at his treatment center if there is any therapists available who work with the cancer patients. OC patients have a high rate of depression, many take anxiety meds. Even some caregivers do as well. Its not easy and its ok to rely on temporary help to get thru it. Whatever works to make it easier is what is necessary.

Your husband MUST take in a minimum of 2500 calories and 48 oz of water every single day. This needs to become the norm and continue for at least the first year after he finishes the treatments. Recovery can be a long process where his nutrition and hydration will play a role in how he progresses. That is also what will make or break him during treatments. Pick up some Boost very high calorie drinks and have him include a couple every day to help push his calories intake higher. Believe it or not he could even take in 3500 or 4000 calories daily and it wouldnt be too much, he probably wouldnt even gain a pound. He is still recovering from his first round of OC so his body burns calories at an amazing rate. This is what is within his control so this is what your husband needs to focus on, not what he cant change.

Stick with us and we will help you both get thru this.

thank you all for your input. i've had to put my nurse ratchet hat on to try and get him to consume those calories. some days it works other days not so much. i'm frustrated and scared and mad all at the same time. his cancer is not due to HPV but to smoking and drinking jack daniels for 45 plus years. He's FINALLY quit smoking altogether and that in itself was a hard thing for him to do. i'll be on later today and i'll chat more then. thank you so much.

Funny-hearing-you-say-your-"Nurse-Ratchet-Hat".My-husband-often-referred-to-me-as-being-"Nurse-Ratchet".It-may-be-hard-some-days-to-come-on-so-strong-but-he'll-thank-you-in-the-end.My-husband-says-he-would-of-never-made-it-without-me-pushing-and-being-his-advocate-especially-with-his-"no-need-to-know-attitude".

Robin, please add a signature when you can. Its important to help us help you. If you need help with it, all the info you need is in the PM I sent you. Let me know if you need me to resend it.

Thanks!

I understand about the nagging issue. My 31-year-old husband was diagnosed with SCC back in November 2013. We've been together 8 years, but the only thing I've ever nursed him back from was a bad flu. This is so much more difficult--trying to get him to swallow his meds, go to the dentist, eat, drink, and do his swallowing exercises. I do feel like a nag, and I feel guilty that I get so easily upset with him sometimes. It's hard when the other person is in pain or feeling bad and is cranky to you. Plus my husband is a doctor himself, so I love arguing with him about doing all of this! You're not alone in feeling like this and I hope he feels better soon. I know they appreciate us more than we could ever know.

Too funny - drs and nurses make the worst patients.

Tell him to be on his toes and monitor them (toes, and fingers too.) Many of the chemo agents (Cisplatin, carboplatin, taxol, taxetere, Xeloda (pill form of 5FU), to name just the ones I experienced) will take a toll on the nerves.

Any numbness tingling, or just plain unusual feelings in the toes or finger tips should be reported to your MO ASAP! That means the you are experiencing neuropathy (death of nerve cells) that can be permanent.

I've got a bad case of it in my toes because they only warned me about numbness or tingling, and that's not what I experienced, my warning (which I ignored, thinking it was bad fitting new shoes) was just a strangeness, sort of like I had a wrinkle or a twig in the bottom of my socks.

I got some in my fingers too, but caught it early and only have a small amount of numbness in my finger tips. Papers slip away if I don't watch it and concentrate on holding tight.

This neuropathy is what is happening when tinitus is experienced; the tiny hairs in the inner ear are being killed, and this is usually permanent. I personally have lost about 50 of my hearing, concentrated mostly in the upper registers. When I reported it, they changed chemo agents and life went on, but the loss stopped.

On the other hand, I've always seen these side-effects as just something of a distraction. Before I'd allow them to change chemo agents, I always asked if the switch would compromise the treatment and reduce the efficacy of the treatment; because if it would, I'd accept the neuropathy as the price of the best shot at survival, and well worth the price.

Good luck to you both!