Throat Blisters

I had white blisters called thrush and from what they told me I had it really bad. I was prescribed some type of moth wash I forget the name and Oxycodone for the pain. I had to put up with the pain pretty much od the day because I drove myself to radiation over 140 miles each day and didn't want to take the Oxy before the drive. The constipation can be resolved with other medication. That was one of the problems, having to take meds to trump what other meds were doing to you. Let the doctor know the hydroco doesn't sit well and he can prescribe something else. We all react differently to this stuff. I know I had to stop taking something because I was halucinating, wouldn't have been bad if it was about winning the powerbal but it was all bad stupid stuff.  You have to get him to start taking nutrition by mouth to keep those muscles working so he can get rid of the tube. Not an easy task it was painfull but it can be done.

Just my $.03 (inflation)

      Jeff

Hi,

There are several things going on. Of course, I've zero certified medical skills, other than being crazy, so I can think like a simpleton only.

HYRATION - NUTRITION - PAIN  MANAGEMENT

These are the core tenents to get well. I would start with pain management. Clearly, if he is suffering and the meds "don't work", he simply is not getting enough of the right narcos, simple as that. Medicine has the pain world pretty well figured out so call the doctor asap and get that sorted. Tell your man he has to banish the pain.

Once the pain is under control, then start working on the oral and throat issues. There is more than one thing going on. The stuff in the mouth can be a number of things. See the doctor and get that treated. The stuff in the throat is probably something else. How much is your man drinking orally? I'm kind of thinking not much due to the pain. If that is the case, get the pain under control and start forcing fluids through the mouth. Try high PH water, it is the opposite as acid and has a buffering effect. Even today, I still enjoy it and it definately has a more soothing appeal. That might help clear both issues.

Lastly, once the pain is managed, start forcing him to eat orally. There are many different soft things to try. Search around and there are plenty of lists.

Being 10 weeks post and having these swallow issues should be concerning. As P says the worry is losing swallow function as it can become lost and forgotten and the PEG becomes a lifelong thether. Full disclosure - this is one of the main reasons I am so strongly opposed to getting PEGs until the need is clear and all other methods to keep the swallowing working as long as possible. Good luck, Don

TraceyEllyn said:

Throat Blisters

Hi Don,

Thank you for responding. I agree with the swallowing concern. When we met with the doctor last week they made him an appointment to meet with the swallowing lady. (I forget her official title).  And the pain management department. Hopefully we'll get some help.

He drinks water almost all day. He has eaten food. He just gets very discouraged because it takes him so long to eat due to the pain. I've tried all the suggestions the dietician has given me to no avail. My husband told me today that he's just going to eat anyway whether he likes it or not. 

Last night was one of the first nights he actually slept better than he has. So hopefully we're on the up swing. 

Thank you again! 

Tracey

Tracey, I remember how much I dreaded eating and how much it hurt with  every bite and I'm still the last one to finish any meal. My throat hurt every bite until 5+ months after my last radiation.   I hated every meal but you do it because you have to do it.   I also fought thrush and still do a maintenance dose even today  10 months out ( thank you LongTermSurvivotr for that suggestion ) and thrush is really painful so I can relate to the painful blisters.  Hopefully the doctors can figure that out quickly and get the pain under control,which has to help his eating and state if mind as it's tough to be in constant pain but this too shall pass.   

I'm sure you know this but eggs, gravy, yogurt, protein shakes and stuff like that are about as easy to eat as you can find.  I found stuff really cold really hurt so mixing protein drinks with whole milk was really full of protein and calories.   Good luck as guys continue back to recovery.  

Keith

TraceyEllyn said:

Throat Blisters

Hi Don,

Thank you for responding. I agree with the swallowing concern. When we met with the doctor last week they made him an appointment to meet with the swallowing lady. (I forget her official title).  And the pain management department. Hopefully we'll get some help.

He drinks water almost all day. He has eaten food. He just gets very discouraged because it takes him so long to eat due to the pain. I've tried all the suggestions the dietician has given me to no avail. My husband told me today that he's just going to eat anyway whether he likes it or not. 

Last night was one of the first nights he actually slept better than he has. So hopefully we're on the up swing. 

Thank you again! 

Tracey

The only way I could swallow anything (liquid) was to numb my mouth and throat with Magic Mouthwash. You can get straight lidocaine also.   I do not know any other way to get nutrition and fluids down with out numbing the area.  Hope he can heal soon and get his feeding tube out.  The worst side effect in my opinion!  No wonder he is discouraged.  

PJ

Guzzle said:

Guzzle

Tracey, maybe I wont be GUZZLE much longer. May have to be called SIP or NIBBLE. But seriously ive just been through first daym I can learn more from you than vice versa. The only thing I can add is that speaking to people here at Clatterbtidge they seem to err on the side of not fitting s tube unless there is a clincal needing. With me I am only having rt one side so Dr. Stated if there was a need she would rather have me in under supervision with a nasal tube. Not i

 

Helpn so many words she looked at my history and told me Id been through worse things than this and to "man up" and if it came to it she d sort me out. They breed em tough up north (drs not me). Those who have tubes seem to be encouraged to be weened of them ASAP. I suppose what they are saying id that at some point I will have to take the pain to eat. What do I know? But I am thinking of you smf your hubby. Best of British to you both. G.

Hey Guzzle,

What do I know?

Going PEGless is no picnic that's what. It will be painful and really hard to get down calories and liquids. There really is no profile for who avoids the PEG and who ends up with one mid treatment. Just know there and be comforted knowing there are many doctors, even very well trained and experienced ones, who side with going without until deemed needed. Good luck on your journey. As you have read you got on average a couple weeks before the road gets bumpy pretty fast.

TraceyEllyn said:

Feeding

Good morning Guzzle,

Since my first post two things have minor improvements. I rejoice in the minor. My husband has slept better and his voice sounds better. However...the throat is the same. I bought him some Aloe Vera gel to drink. And he said it burnt. I also bought Colostrum tablets (to help boost immune system) that a relative suggested. I'll let you know. 

My husband was radiated mainly on the left side of his throat. They would target on the right side too. But that side never got as bad. His first two weeks he could eat. But in one day that all changed. He went from eating to not. He lost 18 lbs in one week. He quit working. It took another two weeks to schedule the peg tube. He tried going back to work at the six week post treatment stage. However from my perspective that was a huge mistake. He dropped another 13 lbs. Caught a cold, and is still trying to regain his strength.

From what I've read I don't think everyone experiences mucositis. Which is worse than thrush. because it won't clear up until six weeks post treatment. My husband had a severe case of mucositis so maybe that is why he's taking a little longer to heal. I'm not sure. 

My husband was so weak when he got the feeding tube, and out of it because he was so drugged that he had to have someone else help assist. He now does it himself. Because of the importance for nutrition and had lost so much weight, he decided to get the peg tube. At his two month post treatment appointment his dietician recommended Ensure Complete. It is comparable to the formula he is taking via tube, however it's pretty high in sugar. I just read the nutrtion labels to compare.

Please, if you have any questions ask. I'll check in later and can share what has helped.

May your treatment go well with you!

Tracey

 

 

Tracey, it definitely takes months ( for me and many others) to eat so it doesn't hurt like hell with every bite.   For me it was in between 5-6 months and then it got better.   I had a Thrush (I have it right now 10 months post treatment:() and muscositis as well.  Every meal was an effort and I absolutely hated it.  

I used this protein mix call EAS Myoplex and it came in chocolate and vanilla. I bought it a case at a time from Amazon.   Instead of mixing with water I mixed it with milk ( the good full of fat kind) as it was about 70 grams of protein and several hundred calries.  You husband needs protein more than just focusing on calories to get his weight, stamina and muscle back.   Focus his diet on trying to get as much protein in his diet as you can (again like eggs, protein drinks, Greek yogurt,etc).  Really cold ( like milk shakes, ice cream) really hurt bad so refrigerated temps (like milk and yogurt) were easier to handle.   Your husband needs to be a man on a mission and that mission is to force himself to get calories and protein.  There's no easy way, it will hurt for a few months but the he really has no choice.  Sugar is no where near as important as protein. 

It will be hard but he can do it.  It's good he has you in his corner.  

Keith

TraceyEllyn said:

Maintenance Dose

Thanks Keith,

I have a question. When you say maintenance dose for thrush, how much and how many days did you take the medicine? Did you use Nystatin? 

I really appreciate your input. Thank you. I will definitely look at the EAS Myoplex. I just bought him a 5 lb container of Spiruteen. I was going to mix it with a scoop of ice cream. I can see the difference between refrigerator cold and freezer cold. I'm just so use to putting in my mouth whatever I feel like at the time, I've never had to consider the temperature. Every time he tells me ice cream is too cold I always give him a deer in a head light response. LOL...I think it's finally starting to register. This whole process has made me more aware of how amazing our design is, and not to take things for granted.

I forgot to mention...when I shared the responses to my posts he said he thinks the reason he may be having a tougher time is because he had 40 sessions in total of radiation compared to 31. It's a long story why, but I think he may be right. 

My husband's name is Stephen. Most people call him Steve. 

Praying the thrush clears up in your mouth and you don't have it anymore.

Tracey

 

Tracey, I am having 33 and was just in overnight. I never met anyone doing 40. So if you look at it that way his recovery must be a bit slower as he has dome 25% more than some. Hoping Steve on the mend soon. G.