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Meet others living with Head & Neck Cancer: Introduce yourself
Head & Neck Cancer | Last Active: Sep 21 5:27pm | Replies (538)Comment receiving replies
@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.
Replies to "@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace Welcome..."
Interesting about the jalapenios. As I said before, I am from Mexico and have had spicy food all my life. I think the jalapenios exacerbate the LP. Now that Maureen mentions it, my oral LP disappeared after surgery. But my LP was fully blown. This were the words of the first specialist I saw. I just had to open my mouth, and he new immediately I had cancer right there, where the LP was very obvious. But I had other symptoms. In my nails and vagina and scalp. Not on my skin though. I had forgotten about it. Hmmmm
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.
Hi, I'm Ileana and my husband was diagnosed with HPV tonsil and tongue cancer. He had surgery and should start radiation and chemo on the 29th. We're enrolled in a trial that requires only 3 weeks of radiation and 2 chemo sessions before checking if it's resolved. We're crossing our fingers that this will be enough and we can continue life with minimal disruption.
Hugs and health to all!
Hi Lleana it is so good to hear he and you are on your way to healing. I heard good things about the trial he is taking from my Radiation Oncologist. Please keep us posted. Prayers.Positive Thoughts and Love Your Family’s Way.
Hello @ileanabalcu! Welcome to Mayo Clinic Connect. 🙂 Great to have you here in this discussion.
If you don't mind me asking, How old is your husband? Are you seeking care here at Mayo, Rochester? What questions do you have for other members that will help you, as a caretaker care for your husband? And- What questions does your husband have for the members that have "been there and done that"?
Welcome @ileanabalcu. We have a couple of caregivers in the Head & Neck Cancer group. Please meet @lisa_sj99 @sylviapf and @gaybinator.
Is radiation daily? Are you working or taking time off work during your husband's treatment phase?
My husband is 63. He is treated in NJ at Memorial Sloan-Kettering - I hope it's Ok to mention "competition", if not feel free to edit.
I will post questions in another thread when i have them. Thanks for starting this group.
What i'd really like is for those of us in the trial to have our own group to share impressions.
Yes, radiation is Monday through Friday. I am lucky enough to be working for my husband so I will take half days off. On the other hand, we have a small company and having two people unable to work full time for a while is putting a strain on the company. It could be worse though. I have no idea how others are doing it!
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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That is interesting. I remember having jalapenos for the first time when Subway came to NZ about 15 - 20 years ago (?). I'm terrible at remembering time frames. It was agony and that is when I first remember having oral lichen planus. I've heard of people having "light" treatment for lichen planus of the skin. It's a tricky condition. We have an oral medicine specialist in our group. I'll ask her what the latest info is on oral lichen planus.