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?

@mrser52

Hi, my name is Elaine, and I have been having dental problems over the past 6 weeks with my Gums. My Gums are pulling away from my teeth on the upper right side. I had SRS radiation treatments in December 2017 for a Tentorial meningioma on. And the place I went to Spectrum Health Lemmen-Holton Cancer Pavilion said that these treatments do not cause this problem. So I must be special because it is has happen to me. Has anyone else have this problem with SRS Treatments for their meningioma brain tumor?

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Hi all,
My extractions were supervised by my head and neck oncologist at University of Maryland Medical Center. They have gone away from Hyperbaric oxygen Therapy and they gave me a long treatment of Vitamin E and a medication that I do not remember the name of right now, to promote blood flow in my jaw. So far, so good.
Elaine, you have to be proactive about your gums. The most important thing is to take care of your mouth very well. I go for cleaning every three months. I use a very good water pick and little brushes between my teeth and I brush every time I eat. Talk to your dentist and have him give you recommendations to control receding gums. I was not told about all the repercussions of radiation, but here I am after five years and happy to be healthy and alive.

@mrser52

Hi, my name is Elaine, and I have been having dental problems over the past 6 weeks with my Gums. My Gums are pulling away from my teeth on the upper right side. I had SRS radiation treatments in December 2017 for a Tentorial meningioma on. And the place I went to Spectrum Health Lemmen-Holton Cancer Pavilion said that these treatments do not cause this problem. So I must be special because it is has happen to me. Has anyone else have this problem with SRS Treatments for their meningioma brain tumor?

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Greetings! I second Loli’s advice about being extra diligent about oral care. About 3 months after chemo/radiation treatment for stage iv oropharyngeal cancer, I started to experience ororadionecrosis — dead jawbone was being expelled through my gum tissue. This has continued now for almost 3 years post-treatment. It is imperative I keep the area clean to avoid infection, ie, using a waterpik, flossing, brushing, and nightly fluoride trays. The roots of the back molar are completely exposed, the tooth is loose but holding on. The necrosis is spreading forward but under the tooth line so we think the other teeth may be saved. I am also on a liquid vitamin E regimen and taking pentoxifylline for tissue health and blood flow. The necrosis coupled with dry mouth and swallowing issues is not fun but I am grateful for my treatment and current health status – no evidence of the cancer. Staying close with your dentist and oral surgeon is important through this process.

Hi, I also keep close to my dentist. I am doing everything he tells me and he is doing everything he can to help me to have healthy teeth and gums.

@mrser52

Hi, I also keep close to my dentist. I am doing everything he tells me and he is doing everything he can to help me to have healthy teeth and gums.

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Any tips you could share here?

@mrser52

Hi, my name is Elaine, and I have been having dental problems over the past 6 weeks with my Gums. My Gums are pulling away from my teeth on the upper right side. I had SRS radiation treatments in December 2017 for a Tentorial meningioma on. And the place I went to Spectrum Health Lemmen-Holton Cancer Pavilion said that these treatments do not cause this problem. So I must be special because it is has happen to me. Has anyone else have this problem with SRS Treatments for their meningioma brain tumor?

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Very interesting @catlyn. I don't know anyone living with this condition although we are always warned about it. Was hyperparic oxygen mentioned to you? I was told once that pentoxifylline was a substitute.

@mrser52

Hi, my name is Elaine, and I have been having dental problems over the past 6 weeks with my Gums. My Gums are pulling away from my teeth on the upper right side. I had SRS radiation treatments in December 2017 for a Tentorial meningioma on. And the place I went to Spectrum Health Lemmen-Holton Cancer Pavilion said that these treatments do not cause this problem. So I must be special because it is has happen to me. Has anyone else have this problem with SRS Treatments for their meningioma brain tumor?

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Hi Maureen, yes, the oral surgeon talked about hyperbaric oxygen and advised against it in my case, he’s not supportive of it as a treatment, we talked about it and (unsolicited) he provided me with a report/study supporting his position that it has no real impact on treating necrosis. My dentist had initially mentioned it but defers to the oral surgeon on treating the necrosis. I’m sure there are differing opinions throughout the medical profession.
When the necrosis began the oncologists said it was an uncommon effect and when presented typically did so 4-5 years after radiation. However, mine began 3 months after. The oral surgeon has at times removed pieces or filed down especially jagged pieces of exposed bone. It actually seems to have slowed.
We’re in watch and manage mode as the gum tissue is healthy and the area has remained free of infection. The gum tissue separates over the dead bone, the bone ultimately sloughs off and the process then repeats. It’s about a 10-14 day cycle and varies from a dull ache & uncomfortable to down right painful. I’m used to it now and am on a pain killer, which makes it tolerable. To support the health of the gum tissue I take 1000 units of liquid vitamin E daily and pentoxifylline 2x daily. Am also taking pilocarpine for the salivary gland issue. I’m extremely diligent about keeping the area (and all my teeth) clean. Where we are now is not a bad thing and the best we can hope for given surgery is out of the question.
As background, I was diagnosed in March 2015, had 35 radiation treatments and 3 rounds of cisplatin. The tumor was at the base of my tongue, right side (that’s where the necrosis is) and had spread to lymph nodes on both sides. The tumor was quite large and the cancer advanced. With about a week of treatment left I hit a wall, unable to eat or drink, was in the hospital for about 2 weeks then resumed and completed treatment in June 2015. Last PET was in Dec 2016 and looked good. Yay!
Recovery has been slow but I’m definitely doing well and grateful for all I have…. family, friends, support network, etc. I retired early (my choice) from a demanding, fast paced corporate position. Sometimes I feel that I am still adjusting to my new normal, however, I’m optimistic by nature and don’t let feeling blue now and then get me down.
I had my last visit with the chemo oncologist in February and continue to see the radiation oncologist and ENT every 6 months.
I’m new to this forum and have enjoyed reading comments from others about their experiences and now sharing my own! ;o)

Liked by loli

@mrser52

Hi, my name is Elaine, and I have been having dental problems over the past 6 weeks with my Gums. My Gums are pulling away from my teeth on the upper right side. I had SRS radiation treatments in December 2017 for a Tentorial meningioma on. And the place I went to Spectrum Health Lemmen-Holton Cancer Pavilion said that these treatments do not cause this problem. So I must be special because it is has happen to me. Has anyone else have this problem with SRS Treatments for their meningioma brain tumor?

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Hi Catlyn,

We have much in common, though my tumor was much smaller than yours, and in my right cheek. Radiation therapy was just preventive but I received 40 treatments. To start treatment my mouth was very healthy in regards of my gums and teeth. They had to pull out my last down mollar during surgery, to be able to place the flap on my inner cheek. Soon after radiation my gums started to recede. The dentist then found out I had started with osteonecrosis of the jaw. He started me on 1000 vitamins E and Pentoxifylline 2/d. I took it for about 4 years and I think it is something to discuss with my doctor in July. Sorry, something came up. Will come back at it later.

@mrser52

Hi, my name is Elaine, and I have been having dental problems over the past 6 weeks with my Gums. My Gums are pulling away from my teeth on the upper right side. I had SRS radiation treatments in December 2017 for a Tentorial meningioma on. And the place I went to Spectrum Health Lemmen-Holton Cancer Pavilion said that these treatments do not cause this problem. So I must be special because it is has happen to me. Has anyone else have this problem with SRS Treatments for their meningioma brain tumor?

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Very interesting. Here in Auckland they talk only of HBO. I'm really glad that the Vitamin E and pentoxifylline are helping to keep your jaw stable. You were unlucky indeed to fall pray to ORN so soon after treatment. I love your attitude – we can't all make peace with cancer like that but it's great to meet people who can. They can help the rest of us!

Many of you have met volunteer Mentor, Maureen @alpaca. Today she was featured as our Member in the Spotlight. Enjoy getting to know more about Maureen here:

Who Can Resist Ice Cream With Chocolate on Top: Meet @alpaca https://connect.mayoclinic.org/newsfeed-post/who-can-resist-ice-cream-with-chocolate-on-top-meet-alpaca/

Good Evening all. I am in the process of fighting my second cancer at the age of 45. I beat breast cancer in 2014 but somehow ended up with a fairly rare cancer – Olfactory Neuroblastoma in April 2018. My ENT did surgery March 2018 thinking he was simply removing a nasal polyp. They called me in April 2018 letting me know that I was at a Stage B (2) and needed to be seen. I live in Kansas City but decided to go straight to the Mayo Clinic because of their reputation. I flew to Jacksonville for consultations with my new team of doctors. They had me scheduled and ready to move forward with our treatment plan 2 weeks later. They were able to get clear margins and my pathology report came back clean, but I will start Proton radiation therapy next Monday at the Mayo in Rochester as a precaution. I was in Minnesota last week for my simulation. I've been told that the Proton therapy is easier on your body. I will have some side effects but not as bad as if I was using a different type of radiation. I'm having some anxiety about starting radiation. I was ok until they clamped my head to the table while in the mask. That was the strangest feeling ever. I'm concerned about the nasal congestion and mouth sores and dry mouth. I'm on the waiting list for the lodge but will be staying at one of the Marriotts near the Clinic. I did a tour of part of the lodge but couldn't see my sleeping area so I am a little antsy right now. My main concern was where I would sleep and bathe but they were only able to show pictures. So I have a few questions….. anyone experiencing/ed Olfactory Neuroblastoma? My radiation will be to my nasal area. Anyone have that area treated before? If so, what were your side effects like? Anyone staying/ed at the Lodge in Rochester? If so, what was it like? Thank you for your input and I wish everyone well during their treatments. ~Trina

@squirrelsnanna

Good Evening all. I am in the process of fighting my second cancer at the age of 45. I beat breast cancer in 2014 but somehow ended up with a fairly rare cancer – Olfactory Neuroblastoma in April 2018. My ENT did surgery March 2018 thinking he was simply removing a nasal polyp. They called me in April 2018 letting me know that I was at a Stage B (2) and needed to be seen. I live in Kansas City but decided to go straight to the Mayo Clinic because of their reputation. I flew to Jacksonville for consultations with my new team of doctors. They had me scheduled and ready to move forward with our treatment plan 2 weeks later. They were able to get clear margins and my pathology report came back clean, but I will start Proton radiation therapy next Monday at the Mayo in Rochester as a precaution. I was in Minnesota last week for my simulation. I've been told that the Proton therapy is easier on your body. I will have some side effects but not as bad as if I was using a different type of radiation. I'm having some anxiety about starting radiation. I was ok until they clamped my head to the table while in the mask. That was the strangest feeling ever. I'm concerned about the nasal congestion and mouth sores and dry mouth. I'm on the waiting list for the lodge but will be staying at one of the Marriotts near the Clinic. I did a tour of part of the lodge but couldn't see my sleeping area so I am a little antsy right now. My main concern was where I would sleep and bathe but they were only able to show pictures. So I have a few questions….. anyone experiencing/ed Olfactory Neuroblastoma? My radiation will be to my nasal area. Anyone have that area treated before? If so, what were your side effects like? Anyone staying/ed at the Lodge in Rochester? If so, what was it like? Thank you for your input and I wish everyone well during their treatments. ~Trina

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It sounds as if you are on a good path to recovery. The mask is daunting but after a few goes it becomes bearable. I like to think of it as a curative element to keep our heads in place for the treatment.
I know a few people who have been radiated in the nasal area. They seemed to have the same side effects as me: inflamed mouth, burnt neck skin but from what I have heard proton therapy is a lot better: more effective and safer. The treatment is really worth it to stamp out any remaining cancer cells – a good insurance policy.
I've had two cancers too but not so young – by age 60. Seem to be okay now and I hoping for the same outcome for you. @squirrelsnanna

@squirrelsnanna

Good Evening all. I am in the process of fighting my second cancer at the age of 45. I beat breast cancer in 2014 but somehow ended up with a fairly rare cancer – Olfactory Neuroblastoma in April 2018. My ENT did surgery March 2018 thinking he was simply removing a nasal polyp. They called me in April 2018 letting me know that I was at a Stage B (2) and needed to be seen. I live in Kansas City but decided to go straight to the Mayo Clinic because of their reputation. I flew to Jacksonville for consultations with my new team of doctors. They had me scheduled and ready to move forward with our treatment plan 2 weeks later. They were able to get clear margins and my pathology report came back clean, but I will start Proton radiation therapy next Monday at the Mayo in Rochester as a precaution. I was in Minnesota last week for my simulation. I've been told that the Proton therapy is easier on your body. I will have some side effects but not as bad as if I was using a different type of radiation. I'm having some anxiety about starting radiation. I was ok until they clamped my head to the table while in the mask. That was the strangest feeling ever. I'm concerned about the nasal congestion and mouth sores and dry mouth. I'm on the waiting list for the lodge but will be staying at one of the Marriotts near the Clinic. I did a tour of part of the lodge but couldn't see my sleeping area so I am a little antsy right now. My main concern was where I would sleep and bathe but they were only able to show pictures. So I have a few questions….. anyone experiencing/ed Olfactory Neuroblastoma? My radiation will be to my nasal area. Anyone have that area treated before? If so, what were your side effects like? Anyone staying/ed at the Lodge in Rochester? If so, what was it like? Thank you for your input and I wish everyone well during their treatments. ~Trina

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Hello @squirrelsnanna,

Have you seen the "Visiting Mayo Clinic" group on Connect? https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/
I'd sincerely encourage you to go through some of the conversations taking place, join in and ask questions, or start a new discussion there. For instance, you might wish to read this discussion:
– What are your accommodation recommendations when coming to Mayo? https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/

Mayo Clinic Concierge service can also assist you with questions related to lodging, transportation, local businesses and attractions. You can find out get many more details here:
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

@squirrelsnanna

Good Evening all. I am in the process of fighting my second cancer at the age of 45. I beat breast cancer in 2014 but somehow ended up with a fairly rare cancer – Olfactory Neuroblastoma in April 2018. My ENT did surgery March 2018 thinking he was simply removing a nasal polyp. They called me in April 2018 letting me know that I was at a Stage B (2) and needed to be seen. I live in Kansas City but decided to go straight to the Mayo Clinic because of their reputation. I flew to Jacksonville for consultations with my new team of doctors. They had me scheduled and ready to move forward with our treatment plan 2 weeks later. They were able to get clear margins and my pathology report came back clean, but I will start Proton radiation therapy next Monday at the Mayo in Rochester as a precaution. I was in Minnesota last week for my simulation. I've been told that the Proton therapy is easier on your body. I will have some side effects but not as bad as if I was using a different type of radiation. I'm having some anxiety about starting radiation. I was ok until they clamped my head to the table while in the mask. That was the strangest feeling ever. I'm concerned about the nasal congestion and mouth sores and dry mouth. I'm on the waiting list for the lodge but will be staying at one of the Marriotts near the Clinic. I did a tour of part of the lodge but couldn't see my sleeping area so I am a little antsy right now. My main concern was where I would sleep and bathe but they were only able to show pictures. So I have a few questions….. anyone experiencing/ed Olfactory Neuroblastoma? My radiation will be to my nasal area. Anyone have that area treated before? If so, what were your side effects like? Anyone staying/ed at the Lodge in Rochester? If so, what was it like? Thank you for your input and I wish everyone well during their treatments. ~Trina

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Hi squirrelsnanna,
How lucky you are you will have proton radiation. Five years ago, there were only three places in the USA, and they were using proton only in children and very hard to reach places in the body.
I know about the mask, but only think that it is so they do not radiate your eye rather than your nose! Radiation is only a few minutes, so I would close my eyes and think of beautiful things, or pray. It went fast.
I stayed at the cancer society lodge in Baltimore. It was a great experience. We were about 40 patients and 40 companions. We called radiation "the tanning both". People went in the evenings and brought dinner, some of them survivors. We joked and laughed and shared. The lodge had been a hotel in the past, so it was confortable. We shared a kitchen. A space in a fridge. Mrs. Brown( the manager) was like a sergeant, and kept us on a leash. We made friends that we keep in contact with and it is so nice when you hear their voices and they are still alive! Do not be afraid; all of this will pass. Even my mouth is not so dry as of lately.
It will be difficult. The burning of the mouth is the toughest, because they do not want you to loose weight. Keep your mouth very clean. They will give you a mixture of pink stuff to swish your mouth. Use it. Follow their directions to the t. They are great at mayo. I was not treated there, but my sister was, just recently. In Scottsdale. First class. I spent three weeks with her in April.
I would be very interested to hear about your experience with proton.
Good luck! Loli

Sounded almost like fun, Loli. I was driven in each day by volunteer drivers from the Cancer Society or by friends and family. Funnily enough, it was quite a social time.

@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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My name is Jim. I was diagnosed with metasticized renal cell carcinoma in 2013. It had been controlled until June of this year when new activity appeared in my lungs. My oncologist switched me from sutent to Opdivo. At about that time, a pain developed in my throat near where my tonsils are located, so my oncologist prescribed an antibiotic. That did not reduce the pain, so he prescribed another course of the same antibiotic. After two months on the Opdivo, I underwent a C/T scan that showed more activity in my lungs. The decision by, my oncologist, was to switch me to Cabometyx. I decided to get a second opinion from Oregon Health and Sciences University. While there, I saw a head and neck surgeon who took a sample tissue of the area in my throat that was giving me problems. It was sent for a biopsy that showed it to be squamous cell carcinoma. It has grown to develop a very obvious hole in the soft palate. I am scheduled to have a P.E.T. scan done this Tuesday to see if other areas have developed to decide on future treatment.

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