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Throat Blisters

TraceyEllyn's picture
TraceyEllyn
Posts: 18
Joined: Feb 2013

My husband is now 10 weeks post treatment for stage 4 tonsil cancer. His PET scan came back free from cancer. Praise God. However, he had an extreme reaction to chemotherapy and radiation therapy and developed mucositis. The sores healed by six weeks out. However he still has thick phelm and blisters in his throat. The doctor was surprised that his throat was still covered in blisters.

He is on a feeding tube, but in order to get it removed he has to take the amount of calories he's receiving through the tube orally for two weeks before they'll remove it.

He has had no relief from pain. He is currently taking no medication for the pain because he says it doesn't work. He simply won't eat because of the pain. I tried giving him the Hydroco with Acetaminophen but it made him constipated and severe headache. He now refuses to take it. I tried 600 ml of just Ibuprofen and he said it did nothing. I've tired Aloe juice, and he says it burns. Ice cream is too cold. I did try Cloraseptic spray and that will give him 20 minutes of relief. 

My question is this. Who has had these blisters and how did you get relief? 

Thank you very much!

 

Duggie88's picture
Duggie88
Posts: 645
Joined: Feb 2010

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

TraceyEllyn's picture
TraceyEllyn
Posts: 18
Joined: Feb 2013

Hi Jeff,

Thank you for responding. He has had thrush in the beginning of treatment. So they gave him Nystatin, and it worked. The Doctor said these blisters are a result of the radiation to his throat. He has been drinking water my mouth, pretty much all day. Because his saliva glands aren't working yet. I just heard a message from the nurse and they scheduled him to meet with the "pain management" office. We'll see how that goes. Thank you!

 

phrannie51's picture
phrannie51
Posts: 4060
Joined: Mar 2012

for mucositis...L-glutamine powder mixed in water.  It is an amino-acid, which supposedly helps healing.  It doesn't sting (where plain water did sting), and it's ok to swallow (actually, a side effect is it helps digestion).  How much it helps in healing, I can't say.....but it did allow me to get one liquid down orally, and help keep my swallower, swallowing.  There are many people who stay  on the tube for weeks and months after treatment, until they can comfortably take their nutrition by mouth.....my worry would be losing the swallowing ability because everything stings.   You can find L-glutamine at your health food store.

If he has thrush, that's different.....diflucon and nystatin are prescribed for it.  Also, probiotics will help (you can get them at the health food store, also).

p

TraceyEllyn's picture
TraceyEllyn
Posts: 18
Joined: Feb 2013

Hello P,

I picked up some L-glutamine and will give him some tonight.  Thank you!

donfoo's picture
donfoo
Posts: 1432
Joined: Dec 2012

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's picture
TraceyEllyn
Posts: 18
Joined: Feb 2013

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

KB56's picture
KB56
Posts: 280
Joined: Apr 2013

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

donfoo's picture
donfoo
Posts: 1432
Joined: Dec 2012

Your post made me laugh as I recollect how slow and hard it was to eat. I swear it would take nearly an hour to choke down food. It was just so hard to do and so much WORK. There was NO joy in it at all but instead a bunch of pain and suffering. It is just part of the process. He will get past this and get better,

PJ47's picture
PJ47
Posts: 355
Joined: Sep 2013

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
Posts: 671
Joined: Mar 2014

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.

donfoo's picture
donfoo
Posts: 1432
Joined: Dec 2012

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.

Guzzle
Posts: 671
Joined: Mar 2014

People keep feeding me? Hows your hubby doing. Had a quick chat with dietician after getting zapped this morning. One piece of advice she gave which I have seen also by friends here is if needed look at meal times as perfunctory like taking a shower. Get pain management right, pick the calories in a format that you can swallow and take your time. Actual enjoyment will return later but more quickly if you can do this. Lets see how tough I am when my turn comes but this was from an experienced professional and seems to be backed up by the experience of people here. Talk is cheap! I haven't got there yet but I hope this helps in some small way, G.

TraceyEllyn's picture
TraceyEllyn
Posts: 18
Joined: Feb 2013

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

 

 

Guzzle
Posts: 671
Joined: Mar 2014

Tracey for taking the time. I know you have a lot on your plate. I am only starting and I know it is much more difficult for you both at the moment. Wishing a speedy recovery, Gary

KB56's picture
KB56
Posts: 280
Joined: Apr 2013

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's picture
TraceyEllyn
Posts: 18
Joined: Feb 2013

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

 

Guzzle
Posts: 671
Joined: Mar 2014

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.

TraceyEllyn's picture
TraceyEllyn
Posts: 18
Joined: Feb 2013

Thank you! I wanted to let you know of a cream that helped tremendously on the radiated skin. It is called Blue-Emu. Praying for you.

KB56's picture
KB56
Posts: 280
Joined: Apr 2013

Tracey, 40 sessions of radiation has to be painful and intense.  I only had 34 and don't know if I could have done 1 more much less 6!  My maintenance dose is dyflucan and I do 10 days off and 5 days on  ( 100 Mg).   I tried to stay off longer this time and went 12-13 days and got thrush again so I'll stay with 10 going forward.  I have some Nystatin but am currently in San Diego for a wedding ( I live in Texas) so unfortunately I left it in Texas.  

Honestly, everything will sting or hurt when he drinks or eats but some a little less than others.  Really cold really, really hurt but refrigerated was a little better.  The EAS drinks were easier to take, full of protein and I mixed them in a blender.  

He has to keep forcing himself to eat something every time it's meal time and something in between (like a yogurt snack, etc).  I wasn't hungry for a couple of months after finishing g treatment but eventually the appetite came back.  I can eat almost anything now except spicy ( and I loved spicy) and can taste everything and enjoy it.  I still am the last one finished, and drink a lot of water, chew, chew, chew, maybe get a little choked once or twice but its ok and good!   Steve will eventually get there as well but after 40 radiation treatments it could realistically take 5-8 months before he can eat without pain.   Trust me, if he can do 40 radiation treatments he can do this.  My only goal was to get that damn feeding tube out and my last treatment was June 11th and I got the tube out July 5th.   I was glad I had it but it was a big step towards recovery in getting it out!

Good luck!  He CAN do this.  

 

Keith

TraceyEllyn's picture
TraceyEllyn
Posts: 18
Joined: Feb 2013

Thanks Keith,

Stephen's radiation was done in two sets. He was told after his tonsil surgery in 2012 that there was no evidence of cancer in the pathology reports. So he started doing the radiation as a precaution, but when the radiologist said he didn't see anything off of the scans. Stephen stopped after 9 sessions. We went back in July of 2013 for a follow-up Pet Scan and it came back not only was there cancer but a 2.5 cm tumor. After being denied at MD Anderson twice because they didn't see any evidence of disease, they finally accepted him. They were reluctant at first because he already had chemo (the wrong kind) surgery and some radiation, but decided to treat him like he'd never been seen. Maybe that's why the extreme reactions. We don't know. I ordered some of the EAS stuff. I got it at Vitacost.

How funny...we live in Texas too.

 

donfoo's picture
donfoo
Posts: 1432
Joined: Dec 2012

MD Anderson is at the top tier of cancer centers. He is receivng the best care available. It is very rare for rads to be stopped at 9 sessions in unless there was some very serious reaction. At least now, you can be comforted about his care. Good luck, Don

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