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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?
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I too had Squamous Cell cancer on a tonsil although at that time chemo was not part of the treatment, only surgery and radiation. Your roller coaster ride is just beginning.
You may want to consider a temporary feeding tube. I didn’t have that option so my diet became mostly liquids, Ensure, broth and jello for several weeks. Find what works. Taste will change or hopefully become nonexistent but this is usually temporary and usually begins recovery a few weeks after radiation ends.
If you wish, please contact me either through this feed or direct message me if you need to be pealed off the walls. It’s going to be a tough battle but you can do it. Tough times never last but tough people do. Any questions you have there are people here that can probably answer.
Thank you very much for your support
I saw a speech tharpist today and will be seeing every wed. Yes she had some greats tips. It all gets a little overwhelming, Friday I am scheduled to see palliative care to decide how to treat any future pain as I am on lyrica and baclofen and much needed tylenol for a totally different issue
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1 ReactionGlad to hear this. Yes it is very overwhelming and scary but once I got on this and some other cancer boards and saw how others before me handled it things became more clear. The docs tell you a lot but unless they have experienced cancer themselves they don’t have the patients experience with the treatment.
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2 ReactionsMayo Jacksonville and Mayo Rochester are both the same deal: Send them a referral and then they cherry pick who they see.
Do u have experience
with Moffit and/or have
U been told they are
" topnotch" by someone
U know?
Hi @new1, several people here have been treated at Moffitt Cancer Center, for example @donfeld and @dsh33782. Here is more information about their rankings from US News https://health.usnews.com/best-hospitals/area/fl/moffitt-cancer-center-6391069/cancer
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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1 ReactionThis is a good idea to know other cancer patients in this category.
I am 70 years old and was diagnosed for oral cancer , verrucous carcinoma in late 2007 . Underwent surgery but as the margin was not adequate got a recurrence at the same location and which lesion was removed by surgical excision. Since then, I have had many recurrences as mine was a multi focal cancer of the oral cavity, head and neck , mainly squamous cell . Treated by surgery , radiation as well in 2015 and 2020 again had further recurrences and had 2 surgeries in March 2020 and have been through a lot of trauma as the second surgery was not really warranted and was coerced by the oncosurgeon on grounds that they wanted to check if the cancer had gone to the bone , though there were no signs of bone erosion. Was basically duped and now suffering as a victim due the free flap fibula implant in the lower mandible followed by radiation and 3 cycles of chemotherapy. Now the side effects of radiotherapy are causing me stress, swollowing and speaking difficulties and am on a PEG tube for feeding as cannot take any food or liquid by mouth which is all sore and painful . Had other 2 recurrences, one in November 2021 when I was treated with Keytruda for 14 cycles but stopped due to another recurrence . Just had laser ablation treatment to remove the lesion / tumor at the base of the tongue , which has been successful and currently on immunotherapy with Ebutrix and low dose chemotherapy to fight any residual cancer. It has been a long struggle and more so recently as have become weak and suffering from pain which is depriving me of sleep.
Any advise ?
Anyone been in a similar situation?
Best
Shailesh Patel
I believe that the recent recurrences are due to the radiotherapy treatment.
It appears Moffit ENT is
Not actually ranked, but
It may still be an option
as a place to start. Probably
Not the best but not the worst.
I have talked to people at
Moffit and have some names. I will find out
Next week who to see and how long the wait is.
My dentist said inside
My mouth looks OK???