I'm new and not sure if I've figured out if I'm in the right place to post a new msg. I'm the mother of a 33 year old son with stage 2 scc of the tongue. 1/6 of tongue right side was removed plus several lymph nodes in the neck area. My son is in radiation therapy having completed 9 days. He is having a lot of pain in the neck area. Is there anything to do about the sore throat which is now making it difficult for him to swallow or speak? He says it feels like gulping boiling water and a scalded feeling. Thanks so much for any help or advice.

Anne-Marie,

Your son's diagnosis and treatment sound fairly similar to mine (mine was 17 years ago at the age of 39), but it took me longer than 9 days into radiation to feel what he is feeling. However, not everyone reacts at the same rate, so what he's experiencing is not too surprising.

It's important that he get sufficient nutrition and hydration each day, so his medical team should be doing what's necessary to keep the pain under control. Also, if it becomes too difficult for him to eat and drink by mouth, he should probably have a PEG tube put in to enable him to keep up his intake. Is he being treated at a major cancer center? If he has an experienced head and neck cancer team, they should be anticipating these problems and helping him to be prepared for them.

Cathy

Anne Marie,

First you need to keep your docs well informed of each and every symptom. They or their nurses can prescribe many different things. Some may work, some may not. Just because something doesn't work, don't give up, but be sure to let your docs know.

As Cathy said, the most important aspect of his treatment is his daily water and "food" intake. His docs again should tell you what they recommend but a good rule of thumb is 48 oz water and 2000 cals a day, EVERY DAY. The PEG tube may play an important role although I did not have a tube at my docs suggestion. Talk to your doc re the tube approach.

Also watch for constipation which is primarily caused by either the meds or insufficient water consumption or both.

Again, the most important thing for you to do is to keep your docs well informed. We are not generally docs, we just have the experience to draw upon and we will share our experiences with you and what worked and what didn't work for us individually. Also remember what worked/didn't for us might not be the same for anyone else.

Anne Marie,

I'm sorry to hear that your son is suffering from so much pain. He and my husband are at about the same place in radiation (Friday was tx #10). Luckily there are many things available to help your son with the pain. He MUST talk to the radiation nurses/doctors about his symptoms and what they would recommend, but in the meantime here are some suggestions.

- Have him use an over-the-counter analgesic/pain killer like Tylenol or Advil to get him through the weekend. Once he communicates with his MD/RN, they can prescribe something stronger.

- Trying various foods to find what is least offensive: yogurt, Boost or Ensure drinks (you can find at the grocery or drug store), mashed potatoes with gravy, soft scrambled eggs with cheese, over-cooked pasta with alfredo sauce. He should try varying the temperature of food, too, as he may not tolerate things being very hot or very cold. My husband is even enjoying the occasional ice cream sandwich - he says the "cookie" part is really soft so doesn't scratch his mouth/throat, and it feels like a real treat!

- As others have mentioned, a PEG tube may come into play in the future, though I think right now you two need to just get through the weekend.

- My husband was also given a liquid aloe medication called OraMagic RX that he can swish around in his mouth and either spit out or swallow. It isn't a pain reliever per se, but is very soothing to his mouth and throat. I think this is a prescription-only product, but you could ask the radiation RN/MD if they have anything similar to suggest. I have read on the forum about other people finding liquid aloe in health food centers, so you could try doing a forum search for "aloe."

- Avoid anything acidic. Even applesauce burns my husband's mouth and throat. He was really missing coffee so has been mixing a little bit of espresso with some ice cream to get it down and not suffer from caffeine withdrawals on top of everything else.

Also David made an excellent point: Once your son starts taking pain meds, constipation can be a huge issue so he needs to stay on top of that and use stool softeners (like milk of magnesia) BEFORE it comes a problem!

Good luck to you! Make sure your son speaks with someone on Monday at his radiation appointment - they should have lots of good ideas for him as well as some helpful medications.

-Tricia

Watch his temperature also. Nine days in I started running a high fever and came down with a rampant case of thrush. If you have problems outside of normal hours, either your RO or another is usually on call 24/7 and will call in meds or admit you you to ER if necessary. Ask them for the number if they didn't give you one.

Take care,
Eileen

Thank you all so very much! We went today for his usual shot before the radiation but they didn't give it to my son and sent him to see the radiation Doctor (same hospital different department) and he gave him a prescription for something called "Magic Mouthwash" which has 4-5 ingredients like hydrocortisone, codeine, etc. 2 tsps not more than every two hours. I will tell him about the other suggestions, too. It's so good to know what to be prepared for. He's been eating mashed potatoes, sweet potatoes and some roast turkey but says that salty foods are beginning to bother him and he's beginning to prefer sweet things like ice cream, popsicles. I will check out the aloe, too. The doctor told him to take a break from the radiation and check back on Thursday if his throat/neck pain was pretty much gone or at least by Monday. Espresso with ice cream sounds really good. I've been worried about his drinking diet coke but he's cut down on that quite a bit. Maybe the espresso with ice cream will take the place of it.
Again, thank you so much. You've all been so much help!

Help! The Magic Mouth wash seems to only help "a little" (at $100.29) and the pharmacist where we got it made a point of saying that my son should not take it more than every 4 hours because of all the other meds he is on. I'm planning to go over to my son's house today and he has asked me to bring my supply of Hydrocodone which I had left over from some back pain I had last summer and I really don't want to do this. He gets depressed a lot and does have a lot to deal with (no health insurance, no job, divorce) and sometimes I don't know what to do or how little or how much I should help. I try to help him have some control over his life and I don't want to be an enabler or do something that will make things worse. He does have a therapist but I don't know how much that is helping. Does anyone have any ideas? Do you think that since he is on a break from the radiation, and with the MM prescription that the pain will lessen? Thanks for any ideas you can give me.

I had morphine sulfate for break through pain and I wore a duragesic (fetynol) patch continuosly for pain. I started out at 25mcg around week 3 and by week 7 I was up to 100mcg.

As far as eating went I lived off warm soup, Progresso was my favorite...even though I couldn't taste it.

Thank you so much, Tim - I emailed my son about your message. It's very encouraging to know that there are ways to manage the pain.

Anne Marie,

The Magic stuff, which they all tout as something wonderful, did nothing for me. You may find, as I did, that he will waste a ton of money on meds that don't really do much or, even worse, meds that actually make him feel worse than before he took them. I could open a small pharmacy with the meds I only took once or twice.

As far as the pain, he will just have to keep after his docs until they find something that works FOR HIM.

Be careful because those pain meds can also make him nauseated or make his nausea worse. That was my biggest problem throughout. I was nauseated from the Tx and I had a painful mouth/throat. Every time they tried to fix the pain, I got more nauseated. When I was sick, I wouldn't/couldn't swallow enough water or "food" so I became dehydrated which caused constipation which caused more nausea and it's own pain. I did not have a tube so it made the feeding and water part difficult.

I finally got so tired of nothing working, I stopped taking all meds and I actually did better. Again that worked for me and it may not be the answer for anyone else.

This is a difficult time for your son. A very difficult time. He or his caregiver needs to communicate often with his docs and ultimately he needs to decide what works or dosen't. Just stay on top of things as much as possible. It will only help him in the long run.

I came out OK. I also didn't find this support group until 2 weeks AFTER my TX had finished. I wish I had found it much sooner because I wish I had had the benefit of everyone's experience. Hearing that what you are experiencing is normal means a lot even if it's painful.

When my husband, Mike was at your son's stage of radiation, the weekend "break" did allow him to feel better. The Magic Mouthwash initially helped some and then it didn't, then a few weeks later helped again. So, don't give up on a product, it might help later.
Anne- Marie, I sympathize with you and can see your dilemma in wanting to help your son and being the Mom. I've got 2 grown sons and struggle with that enabling issue all the time, and they are not sick! It's so hard and no matter what you do, it haunts you that you've made the wrong decision on independence vs enabling.
However, in this situation, with your son being sick, I would vote for helping as much as you and him can handle. The hardest part for you will be dealing with the fact that sometimes you cannot "fix it". You may hear the same complaint from your son over and over, day after day. You could drive yourself ragged trying to get something to work. It took me a long time to realize that really what my husband wanted was someone who would listen to him.