Glenn, I mentioned this to my husband - what you had experienced after your surgery, and he said he thinks he can wait it out till his next doctors appt. in 2 weeks. Personally, I am worried about this - and am trying to urge him to get this checked out sooner. When he went to his surgeon on the 25th of March - the doc looked at everything and didn't see any "problem" or abnormality as far as the swelling is concerned. But then again - if there is a lot of fluid buildup there (which it seems to me there is - due to the fullness under the chin) I think he should see if they can drain it for him. Thanks for the post - it was very informative. Take care.

Donnajean,

Hope things are better today??? I can pass along a couple of things I was told by doctors.

The body when losing a lot of weight will begin eating your muscle mass first and save the fat for protection. This is what has happened to me and my legs especially. Also, this is why Brian talks about getting nutrition with things such as Ensure and Boost instead of my favorite I lived on "Cheesecake". No one ever explained the nutrition piece to us until I started chemo. The radiation docs just kept harping on weight.

The other thing I just heard (pun intended) from my NEW Ent was that radiation can also cause damage to the Eustation tubes and they don't drain as well as they used to. We are watching mine now to see if they will place tubes in them...just like they did my daughter when she was little. (I asked her if she was going to come down and stay with me for that - like I did her, she said IF I had any hair - I don't - she'd come wash it in the sink for me..that was a safe offer on her part)


Hope some of this answers your questions.

Dinah

Donnajean,

I was at the surgeon to have staples out on 9/25/02 and in the hospital on 9/29/02 for the infection. This is after complaining about the swelling on the 25th!!! Absent insurance or financial issues I can't imagine why he would wait 2 weeks. A small issue can become a big problem in a very short time.

As always, it is important that if something is getting consistently worse, you should bring this to your doctor

Donnajean,

People are soon going to want to kick me off this forum for my doom and gloom opinions, but I am really concerned about your husband. The feeling like someone is grabbing him by the throat from behind and the fullness (possibility of fluid) under the chin are just too similar to some of Heather's symptoms. Yes, it is probably just residual effects from his treatment, but I really think you need to get him to the dr ASAP. Good luck!

Rainbows & hugs,
Rosie

Thanks again to everyone for their thoughts and concern regarding my husband. John seems to be a bit better today - but the left (blocked) ear is still bugging him. He was eating better today - he had eggs for breakfast, and a fairly large dinner with meat included. I was doing some research on the net, and I was trying to find more information on the loss of muscle tone in cancer patients - and it mentions a disease called "cachexia" which is fairly common in people with cancer. If my husband is losing muscle tone in the arms and legs - could this be a sign of this disease, which is a "wasting syndrome"? Rosie - thanks (I think!) for the information - but it sure did give me a scare. I think this hopefully will spur John to get to the doctor to get this checked out asap. How is Heather doing lately? Is the chemo she is getting helping to get rid of the re-occurance? Thanks Dinah and Brian as well - the clarification on the words "inflammmation" and "swelling" has been very helpful. I will keep everyone posted on how my husband is doing.

Your husband is only three weeks out from his surgery. Not to mention other treatments. Lymphedema, or the collection of fluids in the surgical area would be normal at this time. My own swelling under my neck and chin didn't go down for almost three months. As I said before, ask your doctor if he feels this is normal, no one here is going to be able to tell you that that amount of swelling that he has, in some abstract definition of if it is a lot or a little, is normal or not. But swelling after this type of surgery is commonplace, and is to be expected. Lymphedema cannot be drained. Your body has to develop new ways to process it. This will take time, a lot more than three weeks. Obviously you want to be sure this is not an infection. But only your doctor and a blood test are going to determnine that. Lastly, a note to everyone who reads these boards. You have to have a realistic idea of what is going to happen after these treatments. To have the lymph nodes etc. removed after a neck dissection is going to throw your heads ability to process lymph fluid out the window. It will take months for new pathways to develop for these lymph fluids to be able to move on. Swelling is to be expected. Soreness and tenderness to the touch is to be expected. Pain is to be expected. Numbness is certainly to be expected that may last a lifetime, since they are cutting through nerve bundles to do the procedure. Weight loss??? Hardly anyone I know that has been through this is eating the 2000 healthful calories per day that it takes to keep their weight normal, let alone build back weight lost during treatments. Donnajean, can you say that your husband is eating more than 2000 calories per day, every day? If he isn't, which I doubt...he is going to lose weight. This doesn't mean that he has Cachexia!!! Look to the most logical answers first. If there are logical reasons for something to be occurring, then the likelihood is that those ARE the reasons, not some other, more rare disease or ailment. As to others who care to speculate without considering these more likely scenarios, you are undoubtedly causing anxiety in others, that you respond to. If we cry wolf at every symptom, especially those that have more likely causes, who will take your comments seriously when you actually hit the nail on the head?

I totally agree with Brian that both the cancer patients and their caregivers should be more realistic about their illness and the effects brought about by the treatment. We are fighting a life threatening illness and not a flu. It certainly takes a very long time, not a matter of days or weeks to recover ourselves and to expect ourselves to return to normal within a certain period of time can be rather naive.It took me more than a year to gain back the weight I lost during treatment( in fact I didn't lose as much weight as some of you did here). Other side effects like numbness, mouth sore, dry mouth.. are still with me.What we can do is apart from getting appropriate professional advice, we should not impose further stress on ourselves.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Ok Brian and Karen - I'll admit you did knock me back to reality. And yes - that makes perfect sense to go with the most likely scenarios - before jumping to conclusions. But I think like everyone else - it's not always easy to keep a level head about things. I tend to notice little changes in my husband, and sometimes rationality flies out the window and panic sets in. When that happens, I often think of the "worst case" it could be. But to get back on track with things - let me say that John was doing better overall today. Last night he couldn't sleep - and he actually had quite a bit of energy today (don't know where that came from!) and was doing activities around the apartment. He is eating fairly well - but as much as I try to feed him - he is by no means the "wolf" he was at eating food like he was pre-treatment, and I don't believe he is getting 2000 calories every day, although I do my best to keep the food varied and calorie-rich as possible, considering he still is restricted on a LOT of foods he normally would love to eat, but can't. And if I'm not mistaken, doesn't it take 3500 calories to gain a pound? If that's the case - forget it! He's no way even close to that calorie amount. His ear (the other non-treated side) is still blocked, but he didn't complain too much about it lately. The swelling is a pain in the neck (no pun intended) and his "hole" in the skin where the stitches came apart still hasn't closed up yet. The phlegm/mucous is still reaking havoc which is a bit surprising because it seemed like that had diminished a few months ago. And even though it's bothersome now - it's not as severe as when he was going through the rads. Well, anyways - thanks again for the "shot of common sense" that I needed to hear - it was just what the doctor ordered!

Dear DonnaJean,
I posted a recipe for a milkshake that literally saved my husband earlier. (Sorry Brian, not sure where it is now) If your husband likes sweets, this is the one for him! 1300 calories in 20 ozs! Let me know if you are interested, and I'll be happy to repeat it for you. My hubby's radiologist now gives this to all her patients.
Love to you,
Mandi