Meet others living with Head & Neck Cancer - Come introduce yourself

Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentors @adriennef and @alpaca and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer, soft tissue sarcoma or thyroid cancer.

Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?

@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don’t forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

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I am not from Mexico, but have always loved spicy foods. They definitely make LP worse. It has been extremely hard to give up almost everything I love to eat. Doc also told me it is mostly women who get LP. Strange.

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My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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Hi @merryinman0811
Welcome to Mayo Clinic Connect. I moved your message to the Head & Neck Cancer group, in the introductions discussion. You may wish to browse that other discussions in the group as well: https://connect.mayoclinic.org/group/head-neck-cancer/tab/discussions/

But let’s get you introduced to some other members who understand. Please meet @alpaca @karly @angelag and @gaybinator

Merry, it must be hard to see your husband dealing with such worrisome symptoms for the past couple of months despite previous tests and scans coming back good. While Nov 30th and Dec 2 seem like a long way off, I’m glad you’re getting to see your oncologist next week. In the meantime, how are the two of you managing with his throwing up and difficulties swallowing? What changes have you been able to make to his diet to help?

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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Hello, Merry. It must be a worry. Dec 2nd is not far away now and you will be relieved to get it sorted out. I wonder if your family doctor could arrange for him to be seen sooner? There might be some scarring causing the problem or any manner of things and he should not need to suffer this. Tell your husband that we wish you both well.

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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We thank you very much for your advice. I am trying not to show him how worried I really am. He worries about me all the time. He is my life and I don't know what I would ever do without him. 

Liked by Jan

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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Thank you for responding and for directing us to the right group. We are trying to give him soft foods and having him drink plenty of fluids. He was so sick yesterday. He was dizzy, shakey, and running a low grade temp. His stomach hurts as well. Next week can't come soon enough. Thanks again.

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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We pray that all will work out, but the anxiety is real and painful.

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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Thank you!

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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Merry, I live in New Zealand and so within a different health system. I hesitate to make suggestions but I would ring the specialist nurse at the hospital and ask if he could be squeezed in earlier.

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@merryinman0811

My husband had esophageal cancer last year and had surgery. They said they got it all. For the past year all tests have come back good. Is it possible that blood tests and CT & PET scans are wrong? He is scheduled on nov 30th for both scans again and we see his oncologist on dec 2nd. He hasn’t been feeling well at all the past 2 months. He throws up a lot and has a hard time swallowing. I’m scared that something is wrong. Anyone else going through this? Please help. Thank you! Merry

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Hi Merry! I just was thinking of you and your husband today. I’m guessing you will be at the hospital/clinic most of the day, but I wanted you to know that I am hoping all goes well. Has anything changed over the past week? Will you get the results on the 2nd? I’d love an update when you have a moment. Thanks!

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Hi. Jano here from Jacksonville, FL. Almost 2 yrs in remission. Had tumor on the back soft palette of my mouth. 35 radiation sessions and chemo. Keeping my fingers crossed. Feeding tube for 5 mos. Experiencing dry mouth, feet meuropathy and lost some taste buds. Hoping it all continues to improve. Thanks for this group!

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@jano

Hi. Jano here from Jacksonville, FL. Almost 2 yrs in remission. Had tumor on the back soft palette of my mouth. 35 radiation sessions and chemo. Keeping my fingers crossed. Feeding tube for 5 mos. Experiencing dry mouth, feet meuropathy and lost some taste buds. Hoping it all continues to improve. Thanks for this group!

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Well done on the two years remission, @jano. Sounds as if you are doing well with most taste buds operational? I have feet neuropathy too from the Cisplatin I had 20 years ago for a different cancer. It has become less annoying over the years but if I get truly exhausted my feet ache and burn still. A bellwether symptom:)

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@jano

Hi. Jano here from Jacksonville, FL. Almost 2 yrs in remission. Had tumor on the back soft palette of my mouth. 35 radiation sessions and chemo. Keeping my fingers crossed. Feeding tube for 5 mos. Experiencing dry mouth, feet meuropathy and lost some taste buds. Hoping it all continues to improve. Thanks for this group!

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Thanks so much.. I had cisplatin also. It is aggressive. Very annoying neuropathy. Comes and goes almost daily. Tried everything. You just get used to the annoyance. I wish you continued good health. Way to go. Petscan next week. Every 6 mos. for now. Here comes the anxiety. Happy New Year!

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@jano

Hi. Jano here from Jacksonville, FL. Almost 2 yrs in remission. Had tumor on the back soft palette of my mouth. 35 radiation sessions and chemo. Keeping my fingers crossed. Feeding tube for 5 mos. Experiencing dry mouth, feet meuropathy and lost some taste buds. Hoping it all continues to improve. Thanks for this group!

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FYI: There is a Neuropathy group on Connect too in case you’re interested. Members talk about all kinds of neuropathy, not only cancer-induced neuropathy https://connect.mayoclinic.org/group/neuropathy/

Hi @jano – I add my welcome!

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@jano

Hi. Jano here from Jacksonville, FL. Almost 2 yrs in remission. Had tumor on the back soft palette of my mouth. 35 radiation sessions and chemo. Keeping my fingers crossed. Feeding tube for 5 mos. Experiencing dry mouth, feet meuropathy and lost some taste buds. Hoping it all continues to improve. Thanks for this group!

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Scanxiety…….we know it well. I have five plus years since original surgery, 2 years since the last lung metastasis. Good luck to you, Jano.
My original H&N squamous cell was in the external ear canal…..near the eardrum. A subtotal temporal bone resection removed most of the middle ear and closed the ear canal. Facial nerve was affected so that was transected and anastomosed during the parotidectomy and select neck dissection. 37 radiation treatments and concurrent cetuximab targeted chemotherapy. So far no recurrence at original site. Taste buds were affected but it is much better now compared to the first year, and dry mouth is an issue but not as bad as many of you. Being well hydrated makes a world of difference in my dry mouth so I drink a lot of water and have minimal caffeine.

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