A member of my family was diagnosed with tongue cancer in early 2005 and underwent subsequent tongue surgery for tumor removal and neck dissection plus external beam radiation to head and neck plus concurrent chemo.

It

Hi Vin,

I was diagnosed with tongue cancer in early 2005 also. I am almost 5 months out of treatment (same treatment). It does get better and I suspect for your family member it will get better sooner rather than later. For me it took about 3 and 1/2 months for the mucous to mostly go away but I still gag on little balls of mucous that end up on my throat once in a while. I still have to spit out gobs of mucous once or twice a day and at night.

A couple of things I found somewhat helpful are sleeping with my head raised at night--the mucous tends to not catch as much in my throat and is easier to just swallow it, and taking Tussin syrup with Guafenisen (I may have spelled that slightly wrong). I also have a PEG tube and the syrup can just be poured through the tube. There are also Mucinex tablets which have the same ingredient and last longer but they are large and need to be swallowed whole which I found next to impossible and your family member may too. The Tussin syrup lasts about 4 hours though, and makes the mucous less thick. I took it at night for a couple of months to help me get some sleep.

Good luck to your fmaily member, perhaps they'd like to look at this site and talk to other people here who have been through it so they don't feel so alone--it's a long gradual recovery!

Nelie

Vin-
this seems very normal. My Mom has/had base of tongue cancer and finished her radiation and concurrent chemo at the end of August. She still continues to have major phlem issues to the point she vomits from the gagging on a pretty regular basis. It seems that many on this board have complained of the same problem. The only thing I can tell you is 1) it will get better in time. The recovery is far slower than most people expect. The rule of thumb around here which you will read is one month of recovery for every one week of radiation. (ie 6 weeks rad= 6 months recovery) 2)Some on this board have had success using Guifiasen (an over the counter cold drug) used to thin the mucous. 3)Also vaporizers are "supposed" to help and plenty of hydration is essential. 4)If it is really horrible they can even use a suction machine (from a medical supply store-ordered by dr) to remove the stuff.

Has your family member had a swallow test since they had their treatment? That can be very telling if the muscles in the throat are working well. That should be the first thing they can do to rule out a problem. My Mom just had hers done and the dr said she has 100% of her swallowing ability. (she also has not eaten by mouth since july) So we were able to tell that my Moms swallowing problem is related to the raw throat and mouth from the radiation. She also has not taste buds and her tongue is very swollen. These are all things that should pass in time. So these are also things that could be interering with your family member's ability to swallow.

hang in there......they should see some advancements in recovery soon!
Tami

Lots of people find the best help with the mucous from a suction machine -- your doctor can prescribe it or you can rent one from a medical supply company. We also found the Mucinex to work well but Nelie is right, it's a BIG pill and can't be cut or ground up as it's timed-release. The Guaifenisen syrup (be sure it's just the syrup, no decongestant which will exacerbate dry mouth) is available over the counter and really helps thin the phlegm out as well. It is also important to be well-hydrated as this thins the phelgm.

Barry got a lot of phlegm rather suddenly one day and it was one symptom of a "walking pneumonia" he had developed -- after he had been on IV antibiotics about 3-4 days, it went away almost 75% and became a minor irritant, mostly at night. Now he has none to speak of (5 weeks out from treatment). So individuals vary a lot in their problem with mucous and also, how quickly it resolves.

A swallowing test is also in order as it can help ID the problems or causes of the swallowing difficulties, and there are exercises etc. that can be done to improve things. Sometimes a dilation of the esophagus is needed because of scarring or a stricture. Our ENT sends everyone for this test, whether they ate or not by mouth through treatment, in order to catch problems before they become a major issue. Ask your doctor about this -- sounds as if it's needed!

Gail

Vin, just to add a note to all of the good advice above-my husband's last radiation tx was almost 4 months ago. He is still struggling with the mucous and phlegm, but it comes and goes now, and some days are much better than others. His Doc's standerd response is "time will make it better", so there are no quick fixes out there. Tell your family member to hang in there and give him\her lots of support. Amy

Tami,

Thank you for your reply and suggestions.
We have tried Robitussin with Guafasenin and it does help. As for your mom, my family member experinces the same symptoms with gagging and vomiting.

A swallowing tests was done. The results were good but there was some aspiration which was relieved by coughing.

Thanks for your encouragement. The recovery has been painfully slow. I am getting worried since I have not seen much improvement. The doctors seem unfazed.

Gail,

Thanks for the suggestion on the suction machine. We will try to get one. We tried the Robitussin which helps with the mucus but not the Mucinex pills because swallowing is difficult.

A swallowing test was done and there was no stricture although swallowing was slow and there was some aspiration.

I hope Barry is doing well.

Amy,

It sounds like we have the same doctors. The standard answer is "it takes time." As for us the mucus has been and it is a struggle. I am happy to hear that for your husband it comes and goes because he can get some relief.

Vin, If not the same Doctors, they surely went to the same classes on "how to respond to patients questions", and I guess time will tell. Since John is close to home while he is working he can drop in and gargle, or take a swig of the "magic stuff" during the day and then go on with his day. We are hoping the mouth thing will begin to improve soon. Amy

Vin - Hang in there is right. I too had horrible phlem (is that really a word?). The Robitussen is still helping me two years later. Each cold I get goes straight to my throat, and the goo comes back in spades. Fluids are still the best defense against the thickening. Luck to you and yours, Tom