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Any insight on how to deal w/lymphedema, swallowing and mouth ulcers?

Posted by cbbeuch455 @cbbeuch455, Jun 19 4:09pm

Hi all. We are new to the group. First time posting. My husband is 62. He had surgery and 35 radiation treatments for Stage 3 VC cancer. Radiation ended 6 months ago. He has had difficulty with lymphedema and swallowing the entire time. He coughs all the time and has so much mucus. He had a temporary feeding tube for a couple of days but decided to get it out. He has been back and forth between a liquid diet and solids for 6 months. At present he continues to struggle with swallowing and mouth ulcers. Constant coughing, and fatigue. He is/has used magic mouthwash, xylimelts, compression garments, massaging, exercises. He has pain meds of Oxy and Methadone. His pet scan at 4 months showed only inflammation. He has another CT scan next week and follow up with the oncologist. We have been to the ER a few times recently with breathing issues related to the swelling. The oncologist does not provide any guidance as to what can give him some relief or how long this will continue to this degree. We are wondering if anyone else may have similar issues or can offer any advice. Thank you in advance.

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ban1952 | @ban1952 | Jun 20 12:26pm

I also had 33 radiation treatment to neck i am 2 months out neck burns cleared up now it's constant throat pain and mouth sores ordered manuka honey and aloe juice vitamin c curcuman mix green smoothie and protein shakes hopefully I see some results soon oncologist says looks good and take time don't forget we were fried

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mmqc | @mmqc | Jun 24 12:20am

Hi, Brad Smith at MD Anderson Cancer Center developed an amazing program to manage lymphedema. I am including a url but I will also add more details later. Lymphedema is an ongoing issue and some very simple manual stretching of the skin can go a long way to reducing pain and inflammation.
Take a look at this site. The principle is to redirect the lymph ( I assume some lymph nodes were removed). It’s a light pressure pulling the surface of the skin in short repeated strokes usually in a down direction twd the heart.
https://www.mdanderson.org/cancerwise/treating-head-and-neck-lymphedema-in-cancer-patients.h00-158829645.html

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mmqc | @mmqc | Jun 24 12:27am

Your husband should also be getting help with swallowing from speech therapy and lymphedema therapy from physical or occupational therapist. Get as much support as possible, because the oncologist won’t be able to help with this stuff. Also pain control is really important!

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mmqc | @mmqc | Jun 24 11:12am

Hi again-
I’m including a link to a 3 minute video of when Brad Smith of MD Anderson, visited our home and treated my Lymphedema.
https://photos.app.goo.gl/XRSySDVU6eQNNUT68
Brad is demonstrating on both my spouse (and me) at the end. Please let me know if you have questions. The photo here is of me in 2015 - during 38 radiation sessions chemo and partial radical neck surgery. Uggh
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zenren14 | @zenren14 | Jun 25 4:28am
In reply to @cbbeuch455 "Thank you for sharing your story. There are a lot of similarities to what my husband..." + (show)
Profile picture for cbbeuch455 @cbbeuch455

Thank you for sharing your story. There are a lot of similarities to what my husband is going through. Recovery from radiation treatment has been very challenging. He has made progress though when I think of how far he has come. Sending prayers to you for better days ahead. We are in this fight with you.

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@cbbeuch455
Gentle reminder....small wins are BIG....acknowledge them...

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