Hello everyone
My husband was diagnosed with scc on the base of his tongue, stage IV, in Feb.2014. He has had the best attitude about tackling this, even knowing how tough it was going to be. His doctors and nurses always comment on his upbeat attitude and great disposition. He's had a rough couple of weeks and his attitude is starting to falter. I thought I would post on here and see if anyone else has had some of the issues that he has. I will post this here in the introduce yourself thread, but it could be put in the after treatment thread- sorry if I goofed.

My husband finished concurrent chemo and radiation in April. Both were hell for him to go through, but he made it. His neck burns healed remarkably well, but his throat is still a big issue. He still has so much pain whenever he tries to eat or drink anything. He takes small sips of water every day because he knows how important it is. However, even the water burns his throat. He has been seen by his radio-oncologist a couple of times since his treatment ended and he has examined him for thrush, but found nothing. He put him on an anti-thrush med (can't remember the name) just in case, but it didn't help as the pain was still there. The ENT has looked at him and said that he has some dead tissue and put him on an antibiotic. Both doctors have said that he is healing more slowly than they expected, but they aren't concerned. He has some sores that have been on his tongue and cheeks since he was doing radiation and they have not healed. Is that too long? The doctors have looked at them, but they don't seem to be worried about them.

He also has lymphedema which he is doing exercises, massage and wraps. It appears to be okay, as long as he manages it.

Lastly, he is still on his anti-nausea medicine, which he believes he should be off of. The times he has tried to go without it, the nauseous feeling returns and he often vomits. The pain of throwing up is excruciating on his burned throat.

He is having a difficult time because he seems to be stagnant. He would just like some signs of improvement and feels like something is wrong or he's not doing something right. The ENT was very firm telling him that he can't control how his body reacts to radiation and he is healing, but it's just slower than others.

Long post, I know. Anyone have any advice? He is being treated at a major cancer center and his treatment seems to be the standard for his type of cancer.

He ends to be a stickler about keeping his mouth clean, and rinsing frequently. This will help with the sores. (Tell him to try flattened club soda he can swallow it it will help heal his throat. He can try swishing ans swallowing with manuka honey too. Movement may help with the nausea... The nausea may related to any meds he's taking as well... This is a long healing process. Hugs and congrats...

Thanks Cheryld- he is meticulous about his mouth care. He is always swishing with a salt and soda mix. He also "brushes" his teeth several times a day. I will definitely tell him about the club soda. Have been using manuka honey since day one- not sure if it helps or not.

Yes we have a standard reply to a lot of peoples' questions and that is we all can react differently to the same Tx and what the ENT says is correct. We also tell pateints that the recovery from this horrific life saving Tx is painfully slow and can take every bit of 2 years with the first year being the most difficult. That said compared to most of us he is on the slow end of healing and if you weren't being seen at a CCC I would have said seek other opinions but I would still keep his docs aware of his progress or lack thereof as often as you want.

What pain meds is he on?

It's very important to the recovery process to give his body tons of fuel and hydration. We tell survivors at least 2500-3000 cals each and every day and at least 48 ozs of water each day.

Does he still have the PEG?

Thanks for the words for wisdom David. I am glad to know the ENT is correct and we will continue to let the drs know about any lack of progress. He reads this forum support too, so he knows he is behind the curve. Yes, he is still on the peg, as it's the only way he gets he can get his calories. He hovers around 2000-3000 calories a day and does a great job keeping hydrated. As for pain meds, he is on fentanyl patch, which he changes every 3 days. He would like to be off that, but with the burning of the throat, he isn't, yet. The only other medications that he is on are mucinex, Prilosec, and zolfran. It's a lot less than the cocktails he was on during radiation.

I'm six months out of radiation treatment and have found lots of ups and downs in my recovery. I'm not talking about psychological or emotional state; I'm referring to weeks that are good with little discomfort followed by weeks that aren't so good, ie more symptoms, usually mouth sores like your husbands, but it can also be just a perpetual bad taste in the mouth, not easy to get rid of. I suppose bad tasting food or food with no taste also plays a role.

I'm telling you this so your husband will know he is not alone in having these problems. He is probably progressing normally, whatever the definition of normal is.

Just tell him to keep fighting, it gets better over time, it sometimes just takes a long time to get there.

Tony

Ah Tony, you guys are so great! This forum has been a terrific resource and it is exactly because of the support you offer each other that I joined. We are pretty private people, which is why neither of us has signed on here before, but we have both been lurking. I decided to join so I can hear about other people's success and struggles. Thanks so much for reminding me (us) that each person's journey is unique.