Hi everyone, first time posting and could really use some advice. I am so happy to have found you all!
I had surgery 3/17/22 on the left side of my face/neck that was stopped early as my doctor thought it was too dangerous to continue, the cancer has wrapped itself around my carotid artery.
So am scheduled to start 7 wk radiation/chemo treatments in 2 wks.
I have severe Trismus, cannot open my mouth at all. They put in a trach tube in case my throat swells so I can breath, and peg tube as I have lost so much weight. I am so worried about vomiting that I might choke to death with no way for any spew to get out of my mouth.
Regarding radiation burns how does one prepare the skin under the trach
and the band holding it on? My skin is already so sore from the surgery that it's painful to wash with a soft wash cloth. I would like to try and prepare my skin if possible before the treatments start up so if any of you have advice I would certainly consider everything.
Thank you so much, Lynn
Hi Lynn, My heart goes out to you. Oh my goodness, you’re going through a horrible experience with this cancer journey. I’m sorry the surgery wasn’t successful.
With your Trismus, was this associated with your surgery? Because I do know it can be exacerbated with chemo and often there are some PT exercises implemented pre-treatment, which helps avoid this form of lockjaw.
Have you been given any physical therapy treatments, exercises or muscle relaxants. Though I’m sure if you can’t open at all taking any medications is a challenge. I can understand your fear of vomiting.
This has to be incredibly stressful but you are doing a good job of keeping your self together. I’m trying not use the words courageous and strong because I’ve been on the cancer side of life. And at the time I didn’t feel brave or strong…just got through one day at a time. So I know you’re doing the same thing. But truly, this is the most courageous thing you’ll ever get through…and you will, one day, hour or minute at a time.
Your trach wound care is a concern. Have you talked to your cancer team about what is the best and least painful way to cleanse the area and promote healing?
I wonder if you can put some padding under the strap?
Lynn, there is a group dedicated to head and neck cancer. https://connect.mayoclinic.org/group/head-neck-cancer/
In this group, there are others such as @alpaca@popeyegurl@msherfinski@arismac@deborahe@jeffk@phinken@loli@karly who have had laryngeal cancer or other head and neck cancer that required a tracheotomy and/or feeding tube. They can offer some tips and support for the issues you are facing with your trach and your upcoming radiation treatment.
You can tap on each name and it will take you to a post they’ve made where you can reply to them or to their profile page.
Hi Lynn, My heart goes out to you. Oh my goodness, you’re going through a horrible experience with this cancer journey. I’m sorry the surgery wasn’t successful.
With your Trismus, was this associated with your surgery? Because I do know it can be exacerbated with chemo and often there are some PT exercises implemented pre-treatment, which helps avoid this form of lockjaw.
Have you been given any physical therapy treatments, exercises or muscle relaxants. Though I’m sure if you can’t open at all taking any medications is a challenge. I can understand your fear of vomiting.
This has to be incredibly stressful but you are doing a good job of keeping your self together. I’m trying not use the words courageous and strong because I’ve been on the cancer side of life. And at the time I didn’t feel brave or strong…just got through one day at a time. So I know you’re doing the same thing. But truly, this is the most courageous thing you’ll ever get through…and you will, one day, hour or minute at a time.
Your trach wound care is a concern. Have you talked to your cancer team about what is the best and least painful way to cleanse the area and promote healing?
I wonder if you can put some padding under the strap?
Lynn, there is a group dedicated to head and neck cancer. https://connect.mayoclinic.org/group/head-neck-cancer/
In this group, there are others such as @alpaca@popeyegurl@msherfinski@arismac@deborahe@jeffk@phinken@loli@karly who have had laryngeal cancer or other head and neck cancer that required a tracheotomy and/or feeding tube. They can offer some tips and support for the issues you are facing with your trach and your upcoming radiation treatment.
You can tap on each name and it will take you to a post they’ve made where you can reply to them or to their profile page.
Hi Lynn, This morning in my Mayo Clinic Digest, there’s a posting for a webinar coming up April 21, 2022 2:30-3:30 Central Time. I thought it might be of interest for you regarding skin care while undergoing radiation.
This webinar will focus on potential skin changes caused by radiation cancer treatments. A Cancer Education Center Patient Educator will cover why these changes occur, what you can do to help manage and treat these changes and if there is anything you can do to prevent skin changes.
My husband received very high dosages of radiation (5 days/week for 6 weeks) for base of tongue and lymph node cancer in his neck in the summer of 2017.The skin burns were very significant. May I pass along a treatment suggested by our radiation oncology nurse. Take 1 part white vinegar mixed with 4 parts water, soak a white cotton cloth and wring out excess ( I cut up men's white 100% cotton t-shirts). Place on burnt area for 15 minutes, remove and let area air dry. I am not lying...it does sting!!!, but gets better! Then liberally apply 1% Silver Sulfadiazine Cream (prescription). Do this 4 times a day. Be sure you use very clean cloths and a clean shirt every time. Within 3 weeks burns were completely healed. Check with your radiation oncologist before using this. Our nurse has 25 years of experience in this field and knows a lot of "out of the box" treatments. Aquaphor was no help for him. Good luck!
Awesome good to know. I pray you guys are doing well. I’ve been diagnosed with the same type and starting treatments May 9th. Will all be getting same number of treatments as well as 4 rounds of Chemo. Did he have any troubles eating and swallowing? And if so what did you do?
Thanks
Awesome good to know. I pray you guys are doing well. I’ve been diagnosed with the same type and starting treatments May 9th. Will all be getting same number of treatments as well as 4 rounds of Chemo. Did he have any troubles eating and swallowing? And if so what did you do?
Thanks
I can't swear this will help with radiation burns, but the singular best thing that I've ever used for any burn is emu oil. Preferably cold-processed and food grade (for purity). I've seen it prevent a bad burn from blistering and it's a standard first-aid item in Australian hospitals for burns. I first read about it on an Australian website for wool spinners (who use it to prevent arthritis from repetitive hand motions) and it's healed things that I thought would remain scar tissue forevermore.
I had pretty bad burns on my abdomen & the only thing that cleared them up quickly was Sucralfate. It's a prescription drug applied to the area. A friend had similar burns & the Sucralfate worked wonders for her, too.
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Hi Lynn, My heart goes out to you. Oh my goodness, you’re going through a horrible experience with this cancer journey. I’m sorry the surgery wasn’t successful.
With your Trismus, was this associated with your surgery? Because I do know it can be exacerbated with chemo and often there are some PT exercises implemented pre-treatment, which helps avoid this form of lockjaw.
Have you been given any physical therapy treatments, exercises or muscle relaxants. Though I’m sure if you can’t open at all taking any medications is a challenge. I can understand your fear of vomiting.
This has to be incredibly stressful but you are doing a good job of keeping your self together. I’m trying not use the words courageous and strong because I’ve been on the cancer side of life. And at the time I didn’t feel brave or strong…just got through one day at a time. So I know you’re doing the same thing. But truly, this is the most courageous thing you’ll ever get through…and you will, one day, hour or minute at a time.
Your trach wound care is a concern. Have you talked to your cancer team about what is the best and least painful way to cleanse the area and promote healing?
I wonder if you can put some padding under the strap?
Lynn, there is a group dedicated to head and neck cancer. https://connect.mayoclinic.org/group/head-neck-cancer/
In this group, there are others such as @alpaca @popeyegurl @msherfinski @arismac @deborahe @jeffk @phinken @loli @karly who have had laryngeal cancer or other head and neck cancer that required a tracheotomy and/or feeding tube. They can offer some tips and support for the issues you are facing with your trach and your upcoming radiation treatment.
You can tap on each name and it will take you to a post they’ve made where you can reply to them or to their profile page.
Are you doing ok with the Peg tube?
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3 ReactionsHi Lynn, This morning in my Mayo Clinic Digest, there’s a posting for a webinar coming up April 21, 2022 2:30-3:30 Central Time. I thought it might be of interest for you regarding skin care while undergoing radiation.
https://connect.mayoclinic.org/event/radiation-related-skin-changes/This webinar will focus on potential skin changes caused by radiation cancer treatments. A Cancer Education Center Patient Educator will cover why these changes occur, what you can do to help manage and treat these changes and if there is anything you can do to prevent skin changes.
Have you seen any improvement with the healing around your trach tube?
Awesome good to know. I pray you guys are doing well. I’ve been diagnosed with the same type and starting treatments May 9th. Will all be getting same number of treatments as well as 4 rounds of Chemo. Did he have any troubles eating and swallowing? And if so what did you do?
Thanks
@firepm, thinking about you as you started treatment today.
I can't swear this will help with radiation burns, but the singular best thing that I've ever used for any burn is emu oil. Preferably cold-processed and food grade (for purity). I've seen it prevent a bad burn from blistering and it's a standard first-aid item in Australian hospitals for burns. I first read about it on an Australian website for wool spinners (who use it to prevent arthritis from repetitive hand motions) and it's healed things that I thought would remain scar tissue forevermore.
Thank You 🙏
How are things going @firepm?
One week down so far feeling OK five more to go so I’m prepared thanks for asking
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1 ReactionI had pretty bad burns on my abdomen & the only thing that cleared them up quickly was Sucralfate. It's a prescription drug applied to the area. A friend had similar burns & the Sucralfate worked wonders for her, too.
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2 ReactionsProbably too late but paw paw cream works wonders