David has been doing so much better. energy better. Still muddling through pain in throat and mouth. He has swelling though around his neck with Fluid. The fluid/water according to RO and ENT is part of healing. But he has an abundant anount it seems. The fluid seem to gather in area of neck in front under his chin. It seems to pool there but yesterday and last night it was huge. This AM seems a little better not so much but I am wondering who else has experienced this. He is 10 weeks post Radiation and Chemo. He has had some slight swelling the whole time but now seems like alot more retention of fluid(water). It actaully looked like he swallowed a small water ballon and it was stuck in his neck. Little humor..He is still unable to swallow even pudding. He is trying everyday though to eat something by mouth. Could trying to eat be adding to swelling????

He has also had slight fever all week very low grade no higher than 100. He is normally around 97.8 - 98.2 Motrin seems to be keeping that in line. But it has been there all week. I spoke to RO nurse on Monday she spoke to RO and no antibiotics. Just Motrin.. Any body else

Anyone else? Any suggestions or input is always so helpful.


Happy Holiday weekend....

has David been seen by a lymph drainage specialist?...my daughter is a physical therapist and works with a lot of cancer patients...she also does lymph drainage...I had been asking her about this last nite on the phone as I'll be having my surgery soon and this has been a concern of mine...I have BOT SSC and along with removing the tumor they'll be taking lymph nodes, so I'm probably going to be dealing with the same thing that is going on with David...check with your doctors and see if they think referring you to someone that does this would help...good luck with everything...I've only just begun my journey...I can see that it is long, difficult, painful and tiring...be sure to take good care of yourself as well...we need our loved ones to be strong and healthy...Kathleen

I'm wondering if the docs are just saying water instead of actually using the term lymph fluid. It really seems like your husband has lymphedema. Your signature does not indicate if David had a neck dissection. Removal of lymph nodes in the neck is usually the cause of this problem.

I would ask the doctors if this is what they really mean and if it is, then David will need to get proper therapy from someone that knows how to do lymphedema massage. If it isn't, then they should see him to see what is going on.

Good luck and don't wait.

Jerry

David has not had neck dissection yet the tumor on one Lymph node on right was 6.3 cm when we started and is now 2.5 cm and will probably be removed. Another Ly mph node on the left side showed some signs of still being active on the left side based on CT done at 8 weeks. We are having another Pet/CT and CT done on 9/17.

we just saw them last week and as I metioned the swelling has been there but not like it has been the last 4-5 days. LAst Night it truly looked as if he had a balloon in his neck infront of his adam apple arear. the fluid goes clear arond his neck but is heavier up front. The RO and ENT both referred to it as swelling and Fluid not actually water. The fever going on at the same time (Low grade) seems interesting. Motri is definetly controling it but makes me wonder what is goin on???

Hi - John had some swelling after treatment - no surgery- but about 10-12 weeks out suddenly had what I considered a lot of swelling in his throat area.

The radiation oncologist dismissed it as "radiation dewlap" - the build up of fluid that others have talked about due to disruptions in lymphatic fluid flows.

It was very pronounced at first - almost ballooning - and later it would be worse in the morning. Now -about 18 months on- it's pretty much disappeared.

Of course not sure that it's the same thing but I know we had a strong reaction at the time - but the doctors and nurses didn't.

Mary

Mary,

Sounds very similar to what David is experiencing. Last night and this morning it is huge like a balloon. He also has a fluid sensation in his ears. His RO and Ent never mentioned Lymphatic fluids..Just stated it was swelling. Others as you see have mentioned the Lymphatic fluid. He did not have any neck disection yet.

Did your husband have any therapy for this? I will call his RO today and try and get him seen. It does increase and decrease in size. But it has seemed to be constant.

Thanks for your reponse.

Hi - no, John didn't have any therapy. At first the doctor told him he might just have to live with it or it might go away over time on its own which it did.

Hope you get some reassurance from speaking with your RO.

Mary

Marvin also has the swelling in his neck area and we were told the same thing that it was from the treatment. His Chemo doctor put him on steroids for about 10 days and when he was on them the swelling went completely away. He was even to eat alittle more when it was down. But he has been off the steroids for several weeks now and some of the swelling has come back. I called to see if he could go back on the steroids but they dont want him on them so we are having to just wait also. He is also going to talk with the ro doctor sept 25th to see about getting the therapy everyone is taking about. I only found one place were we live that may have someone able to do it.

I had the swelling under the chin. Lots of it, especially with radiation. Sleep very elevated at night. I used a reading pillow for awhile, to help the fluid drain during the night and not get any worse. I did not have therapy, I just rubbed gently horizontally and vertically every day and eventually the fluid will find a way out. I had a neck dissection and jaw surgery.
hope this will help a litte. Hang in there

I am 3 months post tx. I have swelling in exactly the same spot. This has only developed in the last month. it was NOT like this right after I completed radiation. Maybe it takes a little while to pool there? I would like to know how to encourage it to go away.