2 months post treatment, swollen neck and water coming out nose

illoozions

Hi all, I had written several times about 4-5 months ago, then life got in the way. Roger has completed his chemo (cisplatin) and radiation treatments. he had stage 4a base of tongue
cancer that had spread down both lymph chains on either side of his neck, He just got the results of his new PET scan and nodes have completely shrunk, with only a faint warm spot showing where cancer was (might be a false positive). We had wonderful Doctors and feel that they kept him alive. About a month after final treatment, his neck started swelling up enormously and changes his voice when it is swollen. We understand that this is lympadema and is fairly common, however in the mornings he finds that he cannot drink liquids easily. The liquid backs up into his sinus cavity and comes out his nose if he drinks too lrge a swallow. Has anyone had this happen to them? How long on the average does the neck continue to swell, and will it ever go away completely? Only other side effects are his lack of saliva, change in taste and his beautiful curly hair is coming in straight :-(

Just a final comment, any of you that come here to this site and feel there is little or no hope, remember if a fast growing stage 4A can recover, science has progressed to the point that just about everyone has a great chance for survival and eradication of this evil disease.

There is a ceiling tile in tghe radiation ward that states "Cancer is a word and NOT a sentence!!! Keep that in mind!
Lybette and Roger Ball

MarineE5

Physical Therapy and Massage
Hello Lybette and Roger,

I'm sorry to hear that Roger is having to battle the Lymphadema right now. But, as you mentioned, many of us do have to deal with this side effect. My question to both of you is, have you been to a Physical Therapist and learned the stretching exercises and gentle massage that will help with the Lymphadema?

If you haven't, please ask your Doctors about seeing someone that deals with cancer patients and learn these things. This will speed up the reduction of the fluids that build up in the face and neck. As you are already aware, the throat narrows as well during the swelling. I did have the same problem roughly 1-2 months after the completion of my radiation treatments. I didn't like it when my morning food was taking the wrong turn and coming out my nose.

I'll send you both a private message with a stretching exercise and massage that I posted some time ago, you can try it to start with and if it doesn't help, you can find a therapist to show you the proper way to do this.

My Best to Both of You and Everyone Here

D Lewis

MarineE5 said:

Physical Therapy and Massage
Hello Lybette and Roger,

I'm sorry to hear that Roger is having to battle the Lymphadema right now. But, as you mentioned, many of us do have to deal with this side effect. My question to both of you is, have you been to a Physical Therapist and learned the stretching exercises and gentle massage that will help with the Lymphadema?

If you haven't, please ask your Doctors about seeing someone that deals with cancer patients and learn these things. This will speed up the reduction of the fluids that build up in the face and neck. As you are already aware, the throat narrows as well during the swelling. I did have the same problem roughly 1-2 months after the completion of my radiation treatments. I didn't like it when my morning food was taking the wrong turn and coming out my nose.

I'll send you both a private message with a stretching exercise and massage that I posted some time ago, you can try it to start with and if it doesn't help, you can find a therapist to show you the proper way to do this.

My Best to Both of You and Everyone Here

Yep, gotta agree with Marine here
These stretching exercises do help. I also run warm water from the shower over my throat in the a.m. I've recently discovered that the vibrating neck massager that my kids gave me some time ago, works really well if I put it on backward, to gently massage the front of my neck.

I am roughly 5 months out, and the edema seems to be the worst now. I wake up in the morning feeling like I have the throat of a toad. For the most part, it diminishes during the day and returns when I lie down at night. I do notice edema of the tongue as well, as my tongue seemed to have taken a pretty hard hit from the rads. I had stage 4 BOT with mets to both sides, also. Sometimes my tongue is so swollen I have difficulty talking. I work with the public, and I often hear "huh?" "What?" "Beg pardon?" because people don't always understand what I am saying. Am I over-sharing here?

Anybody got any good recommendations for ways to reduce edema of the tongue?
Deb

rozaroo

D Lewis said:

Yep, gotta agree with Marine here
These stretching exercises do help. I also run warm water from the shower over my throat in the a.m. I've recently discovered that the vibrating neck massager that my kids gave me some time ago, works really well if I put it on backward, to gently massage the front of my neck.

I am roughly 5 months out, and the edema seems to be the worst now. I wake up in the morning feeling like I have the throat of a toad. For the most part, it diminishes during the day and returns when I lie down at night. I do notice edema of the tongue as well, as my tongue seemed to have taken a pretty hard hit from the rads. I had stage 4 BOT with mets to both sides, also. Sometimes my tongue is so swollen I have difficulty talking. I work with the public, and I often hear "huh?" "What?" "Beg pardon?" because people don't always understand what I am saying. Am I over-sharing here?

Anybody got any good recommendations for ways to reduce edema of the tongue?
Deb

Lybette
I am almost nine month's post treatment & suffer from Lymphedema of the neck also. I am trying out the neck excersize & find that the more I am sitting upright or walking the better it is. I am going to schedule some massages soon also. As far as fluids coming out of my nose it happened quite a bit to me especially after drinking etc. However, now that I am further along it has totally stopped. I was diagnosed as stage four B & as far as I am concerned I am too busy to worry about it. Roger will find that all of these pain in the butt thing's that drive us nuts will get better as time passes.I wish both you & Roger my best!
God Bless
Roz

Skiffin16

Roger's the Man...
Good Morning Lynette,

I was just at the Center yesterday, asking about you.

Roger has had his share with everything else, guess he's still being difficult, LOL.

The Turkey Neck, as you mentioned is really common, I went through it as others. Mine as nearly completely gone away now (16 months post).

More than likely the majority of taste and salivary function will return, mine has for the most part around 90%...no guarantees as you know.

I'm waiting to hit the Red Elephant for another Cheesburger when Roger is up for it and can taste it again.

Hope all is well, with you, Roger, Karen and family.

Best Always,
John

Skiffin16

rozaroo said:

Lybette
I am almost nine month's post treatment & suffer from Lymphedema of the neck also. I am trying out the neck excersize & find that the more I am sitting upright or walking the better it is. I am going to schedule some massages soon also. As far as fluids coming out of my nose it happened quite a bit to me especially after drinking etc. However, now that I am further along it has totally stopped. I was diagnosed as stage four B & as far as I am concerned I am too busy to worry about it. Roger will find that all of these pain in the butt thing's that drive us nuts will get better as time passes.I wish both you & Roger my best!
God Bless
Roz

Gravity Related
As you mentioned Roz, a lot especially in the mornings is gravity related. As we lay at rest the routes and pathways for drainage don't have the downward force of gravity helping out. Later in the day as we have been upright, and especially with light massage, the swelling and fluid retention becomes much less....

Eventually through time, much of the pathways are restored or the fluid makes and finds other pathways to help in the flow and drainage.

Best,
John

illoozions

D Lewis said:

Yep, gotta agree with Marine here
These stretching exercises do help. I also run warm water from the shower over my throat in the a.m. I've recently discovered that the vibrating neck massager that my kids gave me some time ago, works really well if I put it on backward, to gently massage the front of my neck.

I am roughly 5 months out, and the edema seems to be the worst now. I wake up in the morning feeling like I have the throat of a toad. For the most part, it diminishes during the day and returns when I lie down at night. I do notice edema of the tongue as well, as my tongue seemed to have taken a pretty hard hit from the rads. I had stage 4 BOT with mets to both sides, also. Sometimes my tongue is so swollen I have difficulty talking. I work with the public, and I often hear "huh?" "What?" "Beg pardon?" because people don't always understand what I am saying. Am I over-sharing here?

Anybody got any good recommendations for ways to reduce edema of the tongue?
Deb

must have read your mind :-)
Hi Deb,
We just came back from Sam' where we purchased a neck massager for Roger. I saw it and convinced him that putting it on backwards might just work. Came home and read your post, which tells me that I was on the right track, thank you :-) We will see how much bebfit he can get from this, it sounds like you and he had the same level of BOT cancer, he is 3 months out so maybe we can nip it in the bud and stop it from getting worse. I will pray for yours to disappear quickly and thank you for being here for us.
Lynette and Roger

sportsman

Post Treatment
I had a radical neck dissection with fourteen lymph nodes removed and then radiation and chemo for pharyngeal cancer. By removing all these lymph nodes it causes lymphadema and my neck and face collects this lymph fluid. My wife learned to do the massage to move this fluid to lymph nodes in my back and under my arms to relieve some of this pressure. She was taught this by a physical therapist. It is a relatively simple procedure that just takes some time to do. Once doing this I wear this awful lycra contraption that stretches on my neck to keep the lymph fluid forced out of this area. I usually wear it a couple hours after doing the massage. I can not think of the name of it now but it was prescribed by my physical therapist and I think I had to pay about fifty bucks for it since my insurance would not cover it. You must do this periodically or the fluid will return. I have not done this in a couple months now and mine has made a comeback and causing me some problems. Also this fluid builds up at night when you are sleeping and tends to be worse in the mornings. Find out all you can from a physical therapist about this massage and have someone learn how to perform it on you. In regards to water running from your nose; I have a severe stricture caused by the radiation and have been dilated five times post radiation and chemo treatment. Once my stricture gets worse I tend to have some post nasal drip when attempting to eat. Take care, God Bless and try to get that lymph fluid re-routed. I think you will be more comfortable then.