After radiation: Tracheotomy, feeding tube and hard to swallow

Posted by evamarie0077 @evamarie0077, Feb 28 4:14am

After radiation I cannot even take a sip of water I have a tracheotomy and feeding tube 60 % of the time I suffer even with medication I do not know why my throat bleeds at times I do not know a lot to help myself doctors etc seem to busy and rushed to answer my questions

@colleenyoung

Hi @suz22, I'd like to add my welcome too. It sounds like you are having a difficult time with the trach, scar tissue and bleeding. I'm tagging fellow members @karly @sepdvm @jeffk @phinken and @alpaca in the hopes that they may have experiences and tips to share with you.

Suz, have you considered getting a second opinion?

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Absolutely agree to minimally consider a second and third opinion. I had laryngeal chondrosarcoma and as a result of the cancer removal and reconstruction procedures I had a trach in for about six months. I found that excessive canula cleaning combined with 3 times daily doing a lavage really helped with breathing, swallowing and everything else. Moisture is another key which you appear to be doing frequently. Lastly I changed my entire trach on a weekly basis. My cancer did not require radiation so I cannot help in that regard. God Speed!

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@jeffk

Absolutely agree to minimally consider a second and third opinion. I had laryngeal chondrosarcoma and as a result of the cancer removal and reconstruction procedures I had a trach in for about six months. I found that excessive canula cleaning combined with 3 times daily doing a lavage really helped with breathing, swallowing and everything else. Moisture is another key which you appear to be doing frequently. Lastly I changed my entire trach on a weekly basis. My cancer did not require radiation so I cannot help in that regard. God Speed!

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Hi, I'm glad you are doing well. I've had cancer and radiation twice. Last one hit me hard. Did get 2nd opinion but was with same medical organization. Will consider 3rd opinion though if my insurance will cover it.
Thank you for responding!

Suz22

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@colleenyoung

Hi @suz22, I'd like to add my welcome too. It sounds like you are having a difficult time with the trach, scar tissue and bleeding. I'm tagging fellow members @karly @sepdvm @jeffk @phinken and @alpaca in the hopes that they may have experiences and tips to share with you.

Suz, have you considered getting a second opinion?

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Hi Colleen,

I have had a difficult time with trach, bleeding, and being on permanent FT. One member Jeff did reach out to me. I did get 2nd opinion but was with same medical group. The conclusion was the same also. But am considering a 3rd one, preferably with private practice ENT, if insurance will cover. I see in Texas, Anderson has new surgical techniques and options, but they don't have here in NY.

Thank you for answering, and reaching out to other members. I appreciate it!

Suz22

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@1nan

@suz22 and @evamarie0077 I haven’t touched base with Cynde for awhile and need to introduce myself to Suzz and find so many things that make two similar. As a Volunteer Mentor on Connect I had the pleasure of meeting Cynde several weeks ago. I think moving to a new group was beneficial and I would like to suggest that Suzz would find many good connections there as well.
https://connect.mayoclinic.org/group/head-neck-cancer/
Meanwhile, although I have a totally different medical path, I don’t want to think of anyone not finding someone to talk with. So I will always be here for both of you, and hope that you might find help and support in knowing each other. Perhaps @jbhart38731 will post to share his findings from April 14. Since this is actually the first time I have paired two who have not “met”, will you please let me know if it is helpful to share the similar path with each other? And Suzz, how does the other site fit for you? Peace, Nancy

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Hi Nancy,

I will try the other site. Maybe it's a better fit fir me.
I'm akways greatfull fir any suggestions ir comments I might receive.
Thx for responding, and for the link.

Best regards,
Suz22

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@suz22

Hi Nancy,

I will try the other site. Maybe it's a better fit fir me.
I'm akways greatfull fir any suggestions ir comments I might receive.
Thx for responding, and for the link.

Best regards,
Suz22

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@suz22. Hello and hopefully a nice Saturday where you are.
Since our last conversation https://connect.mayoclinic.org/ takes you to the new and improved Home Page and I wonder if you have tried it out. Would you mind letting me know if there is anything I can do for you?
Peace, Nancy

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@1nan

@suz22. Hello and hopefully a nice Saturday where you are.
Since our last conversation https://connect.mayoclinic.org/ takes you to the new and improved Home Page and I wonder if you have tried it out. Would you mind letting me know if there is anything I can do for you?
Peace, Nancy

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Hi Nancy,
No, I haven't tried the new site yet. Can you send me the link?
Thx, Suz

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@suz22

Hi Nancy,
No, I haven't tried the new site yet. Can you send me the link?
Thx, Suz

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Hi Suz. Actually it is the same site, just much improved in response to the many requests from members like you. We are posting right now in the Group “Cancer: Managing Symptoms”. If you click on the three dots in the upper right of this page a menu will drop down. Click on “Home” and you will have a good look at all you need to move around in Connect. I don’t resend to be one who excels in all things computer, but these changes have made this easier even for me! Meanwhile, how have you been doing?
Nancy

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@1nan

Hi Suz. Actually it is the same site, just much improved in response to the many requests from members like you. We are posting right now in the Group “Cancer: Managing Symptoms”. If you click on the three dots in the upper right of this page a menu will drop down. Click on “Home” and you will have a good look at all you need to move around in Connect. I don’t resend to be one who excels in all things computer, but these changes have made this easier even for me! Meanwhile, how have you been doing?
Nancy

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Hi Nancy,
Thx for the information. I will check it out.
My throat hurts me every day, but worse at night. It's from being bone dry, and I can't even sip water. Also I have these wicked coughing spells which irritate my tissues. Never ends, but I keep praying. I appreciate you asking.

Best wishes,
Suz22

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@suz22

Hi Nancy,
Thx for the information. I will check it out.
My throat hurts me every day, but worse at night. It's from being bone dry, and I can't even sip water. Also I have these wicked coughing spells which irritate my tissues. Never ends, but I keep praying. I appreciate you asking.

Best wishes,
Suz22

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Suz, here is the link to Mayo Clinic Connect's homepage https://connect.mayoclinic.org/
Keep us posted on your pursuit for a second opinion. I'll also add the link to contact Mayo Clinic if you may wish to consider consulting Mayo's experts http://mayocl.in/1mtmR63

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@colleenyoung

Suz, here is the link to Mayo Clinic Connect's homepage https://connect.mayoclinic.org/
Keep us posted on your pursuit for a second opinion. I'll also add the link to contact Mayo Clinic if you may wish to consider consulting Mayo's experts http://mayocl.in/1mtmR63

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Thank you Colleen!!

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Esophageal cancer live in Alaska and want to know how others have dealt with chemo radiation and surgery. What plans did Mayo offer

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@dan59

Esophageal cancer live in Alaska and want to know how others have dealt with chemo radiation and surgery. What plans did Mayo offer

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@dan59 welcome to Mayo Clinic Connect. You are definitely not alone. I moved your comment to a discussion about cancer and radiation so you could connect with people who may be going through something similar.

Alaska is really secluded. Have you been able to connect with a good physician?

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