My husband is 7 weeks post treatment and is fustrated and discouraged. it seems like new symptoms caused by the chemo ( 7) and 7 weeks of IRMt for Throat and neck cancer just keep coming. The thick mucous is lessening but it is still constant and gags him. Help!

Jordan, in thinking back, I now remember that for some months after treatment ended, I had neuropathy in my toes. Because it eventually left me, I can tell you that it may not be permanent for your husband either.

As for the mucous, it just takes its own sweet time in stopping. I found that rolling up clean gauze to about the size of my little finger, and putting those rolls into the "gutters" of my mouth soaked up a lot of it and let me sleep for several hours, in a semi-reclining position. Because my mouth was so sore post rad and chemo, I also learned that Puffs brand tissues (without aloe) are the softest and strongest for wiping the gunk out. I know every patient has different experiences, but just about when I thought it would never quit, it just did. Like a switch was thrown. I hope it happens this way for your husband.

Although I have no experience with it, quite a number of patients have used a suction machine, which can be rented. You might ask if your husband's doctor will prescribe one. I seem to remember that some people have posted about Robitussin helping. You might search the forum for that. If I find it, I will let you know.

Finally, although the post treatment time can be really rough, don't ever lose sight of the fact that it will end, and things will get better.

Hi Jordan,

The tingling in the extremities is called "peripheral neuropathy". It does eventually go away. My dental partner has had it from some of the different chemo therapies that he has been on for treatment of his multiple myeloma. You should, of course, discuss it with his doctor.

Jerry

Hi,

I had all of that including the frustration.
It's all a normal part of the whole mess.

Funny I cant tell you how many times I see this out here.

He will get better for sure. The frustrating part is the whole "I wanna get my life back to normal" thing.

Now is the time you realize just exactly what your body went through.
It took me 6 months to feel normal again. The worst is when you have two or three good days followed by 3-4 bad days. That really pisses you off.

Then eventually the good days start taking over and you start to understand what you will have to live with as far as permanent side effects. Neck Spasm's, dry mouth etc. Key word there by the way is "Live With"

The mucous thing has just about run its course as far as thick stuff. Gargle with Baking Soda and it goes away for a while. That helped me quite a bit.

Your in the home stretch for sure here. Stay positive!!!!!

Take it easy. Good things.
-robert

Jordan,

The title of your thread certainly brought back memories -- I remember trying to explain to people what it was like to have to numb my mouth so I could try to tolerate a few sips of water. There's no question that the months after radiation can be really frustrating, when you feel as though you should see more signs of recovery. However, as Robert said, hopefully your husband can begin to see at least some good days fairly soon that will let him know that it does get better.

Cathy

Another person chiming in to say it does get better. Some of us get better more slowly than others and I think it just has to do with individual differences in how badly the radaition and chemo affects us. I had phlegm problems for about 3 months then overnight (it seemed) I went to having much less phlegm but have a cotton-dry mouth most of the time (and very painful still as well). It took about 9 months from the end of rad/chemo for me to notice that I have a *little* saliva back (and that's with taking salagen, IMRT, having taken amifostine during radiation, and getting intra-oral massage to stimulate my salivary glands) and it's really only in the last two months that I haven't regularly had to take some kind of pain killer for mouth pain (I still do have some low level pain all day but it's not bad). Oh, and did I mention I *still* struggle with phlegm sometimes (in part because I can'r swallow it easily but also I still have more of that goopy stuff than I used to)?

I look back on trhe first few months after radiaiton and I am stunned, in retrospect, by how totally awful I felt and how sick I was for how long. It's been a slow road back but it *does* get better. Have patience and have hope.

Nelie

My DH can't swallow at all yet, so he finds swishing with plain club soda a big help to "cut" the mucous in his mouth. He also could not be without his suction machine. Our insurance pays for it with a Dr's prescription. Please check this out. It is small and portable if you need it to be. DH uses it only at home, but we have traveled with it to radiation treatments when his mucous days were so bad that he kept gagging and couldn't lie still on the table. His machine made it bearable to get through treatment. And, your husband's oncologist needs to know about the numbness/tingling. Our oncologist wants to know immediately if this starts happening. There are some things they can give/do to help with the neuropathy.

Jordan, We each travel our own journey from the ray gun, and the poison palace. Some folks have few symptoms and short recovery times, others quite the opposite. The neuropathy can be battled with certain vitamins, but must be taken while you are in treatment. My feet are still numb three years post treatment, but my hands have mostly recovered. My hands trembled for a year and half, and my balance has been very slow to recover - but it is recovering.

The phlegm is nasty and really hard to treat. Almost anything with soda in it will help. Carbonated drinks have enough soda and bubbles to help lift the gunk when used as a swish, but the sugar left behind makes a great breeding ground for yeast infections, so follow a Sprite rinse, with a warm water rinse. I made up water bottles of warm water, a bit of salt and a bit of baking soda, and left the bottles near all the sinks. Every time I walked by, I'd rinse and spit - it helped. Also, double your fluid intake - that helps the gunk too.

It took a while for the body to get so sick, and it takes a while for it to heal up. The chemo and radiation take a huge toll - a toll that is slow to disappear. It is my belief that we never really return to "normal" after this experience. Normal is now something different - in many ways. Mostly good ways. Vertical is good. Alive is good. I am glad that my normal has changed. I still have lots of 'fall out' from treatment, but I'm vertical. Be patient and be strong. TJ

Peripheral neuropathy may or may not go away over time. There are medications which supposedly can help, you would need to talk to a neurologist about this. Some people are helped by low doses of primadone (an anti-seizure drug) or similar drugs, but always after careful evaluation by a neurologist. The peripheral nerves do have some ability to regenerate.

Cisplatin is one of the worse offenders in causing this side-effect, some of the taxanes as well (e.g. Taxol). Our MO gave my husband carboplatin instead of cis- as he already has some problems with essential tremor of his hands (controlled by primadone) -- both our MO and RO said several studies have found no significant difference in efficacy as radiosensitizers in HNC chemoradiation between the two platinoid drugs, but cis- is still given to most patients as it has the longest clinical history and results data.

Gail

Thank you all for your responses. The Medical Oncologist gave us a prescription and it is helping. We have an appointment to see her on 5/17/.The swallowing is the same but the mucous is less thick and less often. He has a thick coating on his mouth which really bothers him. The swallowing has new issues . We saw his ENT last week and he had a barium xray today.
They found an 8 centimeter stricture on his esophaus way down. The radioligist says a stent will be needed. Our ENT has told us to call our PCP to get a referral to a gastro... DOC(sp).I have a call in to him.We also saw a speech therapist who said based on the xray nothing he could offer will be helpful until we see the above doctor. We are very fustrated by the delays and beaureauacy. I will be calling our PCP every hour tommorow. We don't want to have to wait a long time to get this going. From what I have read on this forum- I'm hoping that dilations might be an option beside surgery.
I feel better informed from this forum then by all the complications the doctors don't tell us about. My husband opted for our regional cancer center- Bassett in Cooperstown. Now I'm having doubts. They have a team approach but I feel they don't cordinate and communicate.