Hello,
My husband had his left jaw bone, part of the base of his mouth, bit of his tongue and part of his neck removed in June. He just finished radiation and chemo 3 weeks ago. Ever since his surgery he has had pretty consistent pain in his jaw and face. About 3 weeks into radiation he started getting a lump on his neck near an incision line. Within a few days this tore open on part of the incision line (1/2 inch) and a bunch of fluid came oozing out. This has continued since then. A week ago he discovered if he pushes on his neck and chin he can ooze this fluid out in his mouth too. The Dr's have told us a few things this could be which are.... Damage to the lymph nodes and they will discover new channels to remove fluid over time.
Possible fistula running from one place to another.
Something that just has not healed completely from surgery.
We immediately questioned if this was an infection. The Dr's did not seem to think it was pus and said no. They feel as long as it drains that is good. It ranges from a milky, brown and/or reddish color.
Has anyone else experienced this. What did it end up being? How long before it healed. Are there some tests we could ask they do? They are waiting until 10 weeks out to do another PetScan. Any advice would be greatly appreciated.
Thank so.
Tamara (Kyle's wife)
Kyle - Tumor in tongue removed 3/07 - Chemo/rad followed. Tumor again in part tongue/base mouth/part of neck and around jaw - 6/08 - Chemo/rad followed. Age - 43 non smoker

Oh yes we experienced this. It was Chyle(I believe that's the spelling) It is basically the fluid from the lymph system. Erik had to go back in to the hospital and they put him on a NO FAT diet. (That stops the production of Chyle) He was on that for 5 days and when that didnt work, they had to go back in and do surgery to cauterize the spot where it was coming from.
Erik's wouldnt heal and kept leaking from his scarline and he also could get it into his mouth. I would think that the doctor would be concerned with the open wound that this is leaking from, as he should be healed from the surgery. I would ask the doctor about Chyle and push getting it cauterized, since I assume that your husband isnt eating a ton of things with lots of fat. It is a pretty easy fix once its diagnosed.
Jennie B

Hello,
We saw the Dr. on Wednesday and I did ask him if the fluid could be Chyle and he said no. He mentioned something about the damage to the lymph nodes and dead skin, etc... I did not really understand but my husband did. They are going to do some tests this week to check out the fluid and also a little lump that is now in his cheek. Man this never stops. I noticed a lot of people have read this post but only one has replied. That makes me think the fluid drainage must not be that common. I just feel like the Dr.'s do not move quick enough. They said somethings you have to wait and see. I am grateful they are doing something this week to at least check things out.
Thank you for your reply.
Sincerely,
Tamara (Kyle's wife)

Hi Tamara

its not always easy to answer questions like this.Simply put ,it could be several things,and its not always helpful to compare with other peoples experiences.Robs neck opened up and started draining fluid.It smelt aweful and i was sure it was an infection,but it wasnt,it was the start of a fistula,which can go right through to the inside of the mouth.Damage or removal of lymph nodes can cause lymphatic fluid build up which cant drain away as normal and so finds weakened /radiated areas of tissue to break through,serous fluid can leak through burnt skin,and so the list goes on.

Its not an unusual problem Tamara,but it can be a complex one.
I hope you get some answers from the doctors soon.

liz

Tamara,

My husband has also had a lot of fluid drainage. At first it was an infection caused by a fistula (10 days after release from the hospital). They did treat him with IV antibiotics that time.

However, I think his case may be different. The docs were sure that the infection did some damage and the drainage, while constant since June 15th, is now accompanied by severe bouts of swelling in his jaw & neck.

The next bout of swelling came after his 15th radiation treatment, then again after rad treatment 28, and the current one started eight days after completing his radiation treatments.

The docs aren't 100% sure what this is - fistula, abscess, post radiation side effects. He has been on and off antibiotics since June 15. This last time the doc didn't really want to put him on them, but the swelling continued with very little drainage for over a week, and when he went back, the doc did give him more antibiotics.

His doc also felt that as long as it was draining, it would be OK. There is one sign I always pay attention to when it comes to this drainage -- the smell. In the normal daily drainage, I have not noticed a bad smell, but when it got infected, the odor was very distinct.

His surgeon even had me packing a small hole in his chin to make sure it stayed open so that the drainage continued to have a pathway out.

With my husband, there was not much pain involved in these until the very last one (post radiation). He said that one felt like he had just had 3 teeth pulled. I don't know why three, but a few days later he said it was better and he only felt like one tooth had been pulled.

So, I guess I can't answer your question on why, but yes, there are others who are having similar problems.

The only tests done so far have been cultures on the drainage to make sure there isn't something else lurking there and a CT scan, which was done because we went to the E.R. one time.

I hope your issue is resolved a lot faster than ours. I know how scary it is when this happens and even worse, when the docs are not sure what is happening.

Karen

Tamara:

Im sorry you are going thru this with your husband right now. It must be very scary seeing something like that. Im sorry but I have no experience at all about what you are describing. That also could be why you havent gotten alot of responses. The big thing with oral cancer is there are so many differnt areas (tongue,cheek,lip,jaw,gums, etc) where the cancer could be. With so many different places to be treated, many of us here have very different treatment plans.

I do wish you and your husband the best possible outcome and response to treatment. I hope more who have experienced this will also post a response.