Meet others living with Head & Neck Cancer: 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.

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 or ameloblastoma.

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

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

@dsh33782

Hi @new1
I live in Pinellas Park FL and am being treated for esophageal cancer at Moffitt Cancer Center in Tampa which is about an hour away. My daughter Holly and her husband Chris were stationed in Jacksonville when he was in the Navy as a pilot. I'd be happy to answer questions about my experience with Moffitt and my treatment. I've had 28 days of radiation and chemo now and seem to be on the mend. Let me know if I can help?

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Thank you

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My daughter-in-law, Noriko, lives in Japan and is 40 years old. She was recently diagnosed with angiosarcoma of the scalp. She has had 11 radiation treatments out of 35. She had an allergic reaction to the chemo treatment, paclitaxel. They tried administering it slowly today and she had another severe allergic reaction and even went unconscious. They informed her and my son that they will not be giving her chemo any longer but will continue the radiation. Has anyone had success with angiosarcoma of the scalp without chemo and just radiation?

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@marlow2

My daughter-in-law, Noriko, lives in Japan and is 40 years old. She was recently diagnosed with angiosarcoma of the scalp. She has had 11 radiation treatments out of 35. She had an allergic reaction to the chemo treatment, paclitaxel. They tried administering it slowly today and she had another severe allergic reaction and even went unconscious. They informed her and my son that they will not be giving her chemo any longer but will continue the radiation. Has anyone had success with angiosarcoma of the scalp without chemo and just radiation?

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I had AS on my cheek removed in 2012 and then 30 radiation treatments. I went cancer free for over 10 years before a reoccurrence adjacent to that area. I just had surgery to remove that tissue but because it is close to my eye and is previously radiated area, I cannot have radiation again. Chemo has never been suggested.

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@colleenyoung

@rubagaddal, any update about the cyst discovered on the left jaw and lung nodules? How are you doing?

@shielashepperd, I hope your voice continues to get stronger. Are you working with a speech pathologist?

@apple32, what a relief that early treatments have already relieved your husband's pain. Has he started radiation now?

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Thank So much for your kind care about my situation now.
Yes, about the cyst on the right jaw, the scan seen by a dentist, he suggested a biopsy to be taken to know exactly its nature. But really i am reluctant. given that I received radiotherapy and any dental work is not advisable.
In regard to the lung nodules the oncologist says that it might well be an infection due to aspiration, he recommended Levofloxacin tabs and after three weeks I should repeat the CT scan, if the nodules responded to treatment that fine. otherwise, a biopsy should be taken from the nodule.

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Squamous cell carcinoma with metastatic bone cancer. Head and neck clear after radiation and chemo combination. Bone lesions on hip and spine. First round of radiation and Keytruda do not appear to be working.

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@bruce2023

Squamous cell carcinoma with metastatic bone cancer. Head and neck clear after radiation and chemo combination. Bone lesions on hip and spine. First round of radiation and Keytruda do not appear to be working.

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Hello Bruce2023. Sorry to hear your Squamous Cell has metastasized to other areas. By "first round" do you mean a full 5-7 week course of radiation to the hip & spine? Where are you and what can we do for you? There are many of us who read this feed daily. Let's see what we can help you with.

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I was diagnosed with tonsil cancer which had spread to my lymph node in my neck. This cancer has now spread to my lungs despite six weeks of radiotherapy and chemotherapy. I have been given a terminal diagnosis now of twelve months. Has anyone lived beyond this

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@rubagaddal

Thank So much for your kind care about my situation now.
Yes, about the cyst on the right jaw, the scan seen by a dentist, he suggested a biopsy to be taken to know exactly its nature. But really i am reluctant. given that I received radiotherapy and any dental work is not advisable.
In regard to the lung nodules the oncologist says that it might well be an infection due to aspiration, he recommended Levofloxacin tabs and after three weeks I should repeat the CT scan, if the nodules responded to treatment that fine. otherwise, a biopsy should be taken from the nodule.

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The cyst on the mandible can sometimes heal over time. As I understand it has only been less than a year out of radiotherapy treatment. The mandible can be injured from the radiation and in some cases die (osteoradionecrosis) however this awful side effect from treatment can also be repaired if it comes to that. An oral surgeon should be able to make a determination however time will give you an indication of either improvement or not.
As for the lung nodules, don’t lose too much sleep over this as often as not these prove to be nothing even after a lung biopsy, which is rather like a bad day at the amusement park. Can you let me know how your repeat CT turns out?
Also if your jaw issues progress, could you keep me updated as well?
Just to remind you, your post cancer recovery often takes two or more years and beyond for some effects to work themselves out.

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@traceydoc

I was diagnosed with tonsil cancer which had spread to my lymph node in my neck. This cancer has now spread to my lungs despite six weeks of radiotherapy and chemotherapy. I have been given a terminal diagnosis now of twelve months. Has anyone lived beyond this

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Hi @traceydoc, that is rough news to receive. I remember when my dad was given 6 months. He was with us for 13 months (13 was always his luck number). Your team can only give an estimate based on the predicted progression of disease and your current health status, but it is not an exact number.

What you do know is that time is limited. With that precious time, how might you focus on "what" "who" and "how" rather than "when"?

- How do you want the next months, weeks and days to unfold?
- Who do you want to spend time with?
- What is most important to you?

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@colleenyoung

Hi @traceydoc, that is rough news to receive. I remember when my dad was given 6 months. He was with us for 13 months (13 was always his luck number). Your team can only give an estimate based on the predicted progression of disease and your current health status, but it is not an exact number.

What you do know is that time is limited. With that precious time, how might you focus on "what" "who" and "how" rather than "when"?

- How do you want the next months, weeks and days to unfold?
- Who do you want to spend time with?
- What is most important to you?

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Hi Colleen on my good days(which are many) I do exactly what you. Suggested. On my dark days I cannot help but fret over how my granddaughter will navigate her teenage years without me as she lives with me. (She has just turned 13) until you have been told this type of news no one can imagine what it is like especially in the wee dark nights when your thought go into overdrive.

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