1 good day 5 bad ones

robert77dr

1 good day 5 bad ones last week I thought I was improving I had a good day but it seems it’s went down hill I am unable to swallow very much and the dry mouth is bad I wake very early with all that mucus it takes a while to get it up then it’s all day coughing it up I walk around with napkins. I am 10 month's past treatment when will it get any better or will it ever get better?

hawk711

robert
Wish I could tell you some good news, but my experience on mucous was that it lasted for about 2-3 months after treatment. Then the dry mouth kicked in which is another problem in itself. I never had both at the same time as you seem to have. I'd discuss with your Dr about why the mucous is still there. Dr's usually tell you that everyone is different and healing is different for us all. I used a suction machine and lost of Stoppers 4 spray to help with the mucous situation.
I am hopeful that some of the others can help, maybe Sweetblood, as she has a lot of issues with dry mouth. Try to PM her or maybe Hondo, they may have some more specific ideas.
Wishing you all the best,
Steve

Ed_PortOrange

It does take time
I felt the same way you do, in the beginning. This is a marathon of recovery and improvement is running at a jog while your mind is longing for a sprint. I'm now almost 19 months out of treatment and I still have spit cups in most rooms. I take one when I leave the house and continually have to clear my throat of mucus. As many have mentioned it's just the new normal.

Stay positive, it will improve with time.

Ed

jim and i

Robert, sorry you are still
Robert, sorry you are still suffering with the mucous. I can't offer much help but a big hug and prayers it gets better.

Debbie

fisrpotpe

Good term
in one of the posts it's described as a marathon recovery. this is the best description of recovery i have heard in 15 plus years post treatment. i do not know your age but have seen the older you are the slower, then again the protocol is "everyone is different". it took me almost a couple years to have the mucus slow down, but it did so i consider that longer than a marathon. i still carry water every where i go along with paper towels.

no one can say for certain, i do feel it will get better.

i do personally believe you should try the stoppers4, it will help loosen up the crud in back of throat and also help moisten you mouth. when i started to use it that is when i found the best relief.

good luck

john

Hondo

Hi Robert
What are you using to help clean out the mucus, I use baking soda with a little peroxide as a mouth wash and then NeilMed Sinus Rinse. I warm the water up put the NeilMed rinse in the bottle and squirt it up my nose to clean out any mucus in the nasal passage. This I do sometimes 3 or 4 times a day as needed. I been radiated twice to the head and had very bad mucus for a long time till I started doing this then at night I use the Stoppers 4 dry-mouth spray. I am doing well now still a little mucus problem but nothing I can't live with.

Wish you well my friend
Hondo

D Lewis

Welcome, Robert
And, welcome to your new normal. I have noticed, at 16 months out now, that I still have an 'impaired' swallow. The radiation damages your throat muscles, among other things, so my swallowing difficulties will probably be permanent. It takes a lot more effort to get things down. If I take too large a bite, it may take four good swallows to push it all the way down. I don't have a huge amount of mucous, but I do notice that its a challenge to clear it all out of my throat in the morning. If I have a bit of a cold or sinus issue, it's a real struggle to clear out all the crud. The mouth is dry. I keep water on a bedside table, and I still need to wet my mouth four or five times during the night. If you're sleeping through until early morning, you're doing pretty good for ten months. I do notice that some days are more 'dry' than others for me.

Don't get discouraged. From what I've heard from the veterans around here, we will continue to slowly improve for years to come. Vent away as much as you need.

Deb

robert77dr

D Lewis said:

Welcome, Robert
And, welcome to your new normal. I have noticed, at 16 months out now, that I still have an 'impaired' swallow. The radiation damages your throat muscles, among other things, so my swallowing difficulties will probably be permanent. It takes a lot more effort to get things down. If I take too large a bite, it may take four good swallows to push it all the way down. I don't have a huge amount of mucous, but I do notice that its a challenge to clear it all out of my throat in the morning. If I have a bit of a cold or sinus issue, it's a real struggle to clear out all the crud. The mouth is dry. I keep water on a bedside table, and I still need to wet my mouth four or five times during the night. If you're sleeping through until early morning, you're doing pretty good for ten months. I do notice that some days are more 'dry' than others for me.

Don't get discouraged. From what I've heard from the veterans around here, we will continue to slowly improve for years to come. Vent away as much as you need.

Deb

Bad days
I sm trying but it is hard. I have tryed every thing the Doctor said. Last week I tryed the meatloaf Sweet told me about I got it down but after that only soup and soft food. I use bioten spray i think it works better than stoppers 4 the mucous is bad. I dont have any enegery to get going. I wonder if stroades would help???

sweetblood22

Are you still taking the
Are you still taking the salagen or Evoxac pills? Did the mucous get worse since you started on the pills? Just curious.

I know my mucous didn't even start to get better for like 6 months, mine was bad for a long time, but apparently my severity with the mucousitis is because of my blood disorder.


Have you ever gone for a swallowing study? They have you eat and drink stuff and watch it go down or get stuck on a monitor. Maybe you need a speech pathologist to work with. They never gave me one to work with and I definitely should have. I'm not sure if it would be helpful in your case or not because I'm still not clear as to why you have so much trouble swallowing. All I can tell you, is it takes some of us longer. I didn't eat anything at all, nothing for nine months. You have been through so much, you need to cut yourself some slack. It's going to take time.

I have just accepted that I will be living on a lot of soups, and a lot of soft foods. I have just resigned myself to that fact and I embraced it, and ran with it. Instead of fighting it, I did everything I could to prepare my food so it was easier for me to swallow. Used the mini chopper, cooked foods so that they were softer, ate soft foods, a lot of soup, drank a ton of smoothies.... And slowly but surely it has improved over the last year. Yep, a whole entire year. Believe you me, I have about the patience of a saint. I still have to cook my food a bit softer, but at least it's not mush anymore, I still have to dice my veg to cook it, at least it's not minced, but it's better than last year. I have put on 15 pounds since my tube was removed. I figure I could have looked at the glass as half empty, could have looked at all the yummy stuff I couldn't eat and made myself annoyed and unhappy. Or I could be happy I finally got rid of my peg tube after 18 months and keep trying to eat a little more every day. There was honestly a point where all I ate was bananas and avocados everyday. for months. I just keep trying and hope tomorrow will be a better day, and I make something yummy I can swallow. I still have bad days where I cannot manage to eat what I made. Tonight was one of those nights. The dogs got my meat. I know a few of us that are still struggling with food, for one reason or another.

Maybe talk to your doctor about a swallowing study and swallowing exercises. Speech therapist. That's the only things I can think that can help you. I do understand your frustrations!

robert77dr

sweetblood22 said:

Are you still taking the
Are you still taking the salagen or Evoxac pills? Did the mucous get worse since you started on the pills? Just curious.

I know my mucous didn't even start to get better for like 6 months, mine was bad for a long time, but apparently my severity with the mucousitis is because of my blood disorder.


Have you ever gone for a swallowing study? They have you eat and drink stuff and watch it go down or get stuck on a monitor. Maybe you need a speech pathologist to work with. They never gave me one to work with and I definitely should have. I'm not sure if it would be helpful in your case or not because I'm still not clear as to why you have so much trouble swallowing. All I can tell you, is it takes some of us longer. I didn't eat anything at all, nothing for nine months. You have been through so much, you need to cut yourself some slack. It's going to take time.

I have just accepted that I will be living on a lot of soups, and a lot of soft foods. I have just resigned myself to that fact and I embraced it, and ran with it. Instead of fighting it, I did everything I could to prepare my food so it was easier for me to swallow. Used the mini chopper, cooked foods so that they were softer, ate soft foods, a lot of soup, drank a ton of smoothies.... And slowly but surely it has improved over the last year. Yep, a whole entire year. Believe you me, I have about the patience of a saint. I still have to cook my food a bit softer, but at least it's not mush anymore, I still have to dice my veg to cook it, at least it's not minced, but it's better than last year. I have put on 15 pounds since my tube was removed. I figure I could have looked at the glass as half empty, could have looked at all the yummy stuff I couldn't eat and made myself annoyed and unhappy. Or I could be happy I finally got rid of my peg tube after 18 months and keep trying to eat a little more every day. There was honestly a point where all I ate was bananas and avocados everyday. for months. I just keep trying and hope tomorrow will be a better day, and I make something yummy I can swallow. I still have bad days where I cannot manage to eat what I made. Tonight was one of those nights. The dogs got my meat. I know a few of us that are still struggling with food, for one reason or another.

Maybe talk to your doctor about a swallowing study and swallowing exercises. Speech therapist. That's the only things I can think that can help you. I do understand your frustrations!

Evoxac
Yes I am still taking the Evoxac and it seems to be worse I plan on trying it for several month's to see if it helps I have some taste back I have had a swallowing study and exercise when I have a good day then several bad one's I get dowm. I tryed your meatloaf and was able to swallow it.That was last week.

Hondo

robert77dr said:

Bad days
I sm trying but it is hard. I have tryed every thing the Doctor said. Last week I tryed the meatloaf Sweet told me about I got it down but after that only soup and soft food. I use bioten spray i think it works better than stoppers 4 the mucous is bad. I dont have any enegery to get going. I wonder if stroades would help???

Hi Robert
On the no energy problem try two things, first have your doctor check your Thyroid levels and see if there is a problem there. Second get on an Iron supplement, when I was so weak my doctors could not find anything wrong with me. Then one lady at work told me about Iron, I did one Iron pill ever other day and it was like a miracle, I was back to my old self in a few weeks. I use Feosol Iron Supplement Therapy 124 Tablets

Wishing you the best
Hondo