Mucus membrane in mouth damaged

Oh Clive...that's so sad to hear. It's one thing to go through such a brutal treatment but quite another to suffer such horrid permanent side effects. I can't help with the mouth issue...unless maybe to ask whether you have explored a second opinion to investigate neuropathic pain?

We have a member seeker1 who posts here now and then and I know he has repeat dilatations to keep his oesophagus open

Perhaps he might pop on with some words of wisdom

Good luck and I hope you get some relief somewhere

Hi Clive,

I had Doxil and carboplatin and yes had mouth sores> My doctor gave me the same things, lidocaine but it doesn't last.  What helped me was gargling with baking soda to get rid of the bacteria and it helps alkaline your body. It's so important to keep your body alkaline during chemotherapy. I also went to an acupuncturist that helped with the side effects.

I hope this helps.

Clive is not in therapy but has been in remission for five years. It's a different scenario from the mucositis you get due to active treatment but I agree with the acupuncture. That may well help and Clive has to find a practitioner who is familiar with oral problems and cancer

Hi, this is a joint reply to Beesuit and Kahele. Many thanks for your comments, I also take amytryptilene for nerve pain but it doesn’t seem to help much. I also had quite a long series of acupuncture at the start but soon realised I was wasting my money. I also take oromorph and I find that the combination takes the edge off but recently it has had less of an effect. The lidocaine is my saving grace as my GP is happy to let me use it as required. My GP has been great as has my Consultant but they have been unable to come up with anything. I’ve also gone through the Maxillo Facial department but they are also at a loss. I suppose I am looking for moral support from someone who might be in the same position although I would not wish this on anyone. Once again thanks for your replies.

Hello! You are not alone! My mouth has also been ruined although not to the extent of yours. I can only eat pureed food and I also have trouble with fruit juice. I have had repeated dilations of my food pipe but since covid I have not had any and it seems to be closing up. I have sent emails to my doctors some time ago but had no response. The trouble is they are not prepared to put a stent in. If your doctor is prepared to do this I would like to go to him. I have once mentioned here a book written by a doctor who is himself ill with the same problems we have, who says it is very common as a result of radiation. My cancer was in my voice box which was removed which is quite far from my mouth and I dont know why my mouth had to be over radiated. I dont take any  medicine for any of this and just live with it. It is a struggle keeping alive.  I cant think of anything to cope with it. The ruined mouth cant be fixed, but you can have endoscopy which can dilate the food pipe. I am surprised that your doctors dont offer this. Is there any reason why you cant have it. 

All the best!

Dr. Brook is a physician who specializes in pediatrics and infectious diseases, and a head and neck cancer survivor. Initially diagnosed with throat cancer in 2006, regrettably, his cancer recurred after initial treatments, and his larynx had to be removed. Becoming a laryngectomee was a trying experience for Dr. Brook, as it affected his most fundamental functions: speaking, breathing, and eating.

Communicating with others became a challenge for him, and he had to learn how to speak again.

“Speaking requires mastering daily procedures and techniques using equipment and devices that have to operate in the most optimal way for me to be heard and understood,” explained Dr. Brook. “Furthermore, I had to face new medical issues that emerged as a result of the treatment I had received and had to confront many psychological and social issues. Becoming a patient with a serious illness after practicing medicine for over 40 years allowed me to understand the hardship and difficulties that patients face in ways I could not have done before.”

https://www.headandneck.org/ambassador-profiles/itzhak-brook/

His free books are most likely of interest to all patients here.

Last time I put this post on, and copied a page from his free book it was deleted by those in charge here. I have no idea why they dont want people to get better. So please copy the link straight away. 

Hi Seeker1, many thanks for your reply and suggestions, I think we may have exchanged messages some time ago about eating. As you can guess I have come back to the forum this time about my mouth. After my treatment my oesophagus had closed completely and although I had 3 attempts at dilatation they all failed. After a year of not being able to eat or drink I was sent to another hospital 70 miles away where they conducted an operation to open it up. Since then I have been able to take fluid but not solids.  I have had a few dilatations since then and enquired about a stent but my consultant has told me that my stricture is so close to the top of my oesophagus that there is insufficient muscle to hold it in place and it would be pushed up and out possibly causing me to choke.  Can you check to see if this is why you can’t get one fitted? I have just had another video swallow test and they have suggested another dilatation so I might get one soon. It has certainly narrowed over the past two years since my last one. I guess we are just 2 of the unlucky few that not only endure the treatment but are left with problems with side effects. I know what you mean about a struggle to keep alive, I am now in the situation that I am struggling on a day to day basis but I suppose we just have to keep our heads down and keep on going. I am ex military and I am convinced my experience there is what gives me the strength to go on.

good luck, keep on going and all the best for the future.

Clive

Thanks! Yes that was the reason they refuse a stent. I have tried another hospital but they also refused. I have agreed to accept the consequences but that doesnt help. I am not sure why they cant make a long stent right down the food pipe and it should be kept in place further down so it wont move up and out. I   was told at my last dilation that it was 10mm but it has gone a lot down since then. The whole endoscopy doesnt take 10 minutes and I dont know why they cant find time for me. It seems a very lot of people need it. I asked my doctor once and mentioned it on here if it can close completely. Now with what you tell  me it can, I will send a copy of what you wrote to him and tell him I am also scared this is happening to me. Maybe it will help that I should get an endoscopy soon. As the doctor above writes it affects breathing and eating which I all the time have problems with. That is apart from other problems which have not to do with the cancer. If you get any positive result about the stent, please dont hesitate to let me know. 

https://www.entnet.org/wp-content/uploads/2021/06/LaryngectomeeGuide.pdf

Here is his 90 page free book to download.

Dilatation of the esophagus
Narrowing of the esophagus is a very common consequence of
laryngectomy; dilatation of the narrow esophagus is often needed to
reopen it. The procedure usually needs to be repeated and the frequency
of this procedure varies among individuals. In some people this is a
lifelong requirement and in others the esophagus may stay open after a
few dilatations. The procedure requires sedation or anesthesia because
it is painful. A series of dilators with greater diameter are introduced
into the esophagus to dilate it slowly. While the process breaks down
the fibrosis, the condition may return after a while.
Sometimes a balloon rather than a long dilator is used to dilate
a local stricture. Another method that may help is the use of topical
and injectable steroids in the esophagus. Although dilation is done
by an otolaryngologist or a gastroenterologist, in some cases it can be
accomplished by the patient at home. In difficult cases, surgery may
be needed to remove the stricture or replace the narrow section with a
graft.
Because dilation breaks down fibrosis, the pain generated by the
procedure may last for a while. Taking pain medication can ease the
discomfort. (See Pain management, page 101)

From the book  www.entnet.org/.../LaryngectomeeGuide.pdf