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Metallic taste
Hey everyone. I tried to search this question but could not find it. I have two more chemo sessions left and about half way done with radiation. I am doing great as I still work out and take nice hikes. My biggest side effects are metallic taste and semi-dry mouth. I do have a feeding tube but do not use it as I am able to…
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PEG food
Hey guys, As I'm finishing up the first week of rads I'm making sure I have everything in order to begin using the PEG as soon as it's necessary, if at all. I'm not happy with the ingredients for the canned feedings that my doc has supplied, even though we did find a vegan option. I'm also not finding anything commercially…
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3 years NED
Another one dropping in to say Hello! Hubby is doing great! We are truly blessed. Prayers to all.
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Neck Dissection first part of my kill cancer protocol
Hi! I am a newbie here :) . My cancer presented with a swollen lymph node under my jawbone below the ear. My diagnosis was SCC Stage 4a with unknown primary. They are pretty certain it carries the HPV 16 marker and will have a definite on that soon. Surgery with TORS is being scheduled soon for a search for the primary,…
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Christmas came early
In August I had a tumor removed from the base of my tongue. I started radiation treatments in early September and finished about the middle of October. I recently went for a follow up with my ENT. He scheduled me for a CT scan on December 16th. Needles to say I did not sleep much while waiting on the results of the scan.…
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Nice deal
Hi I'm new but been lurking for a month. I'm Stage III N-1 M-0 HPV-pos tonsillar. Sentence was for 33 rad, 8 chemo with Carbol-platin. I have 0 chemos , 5 rads left. came here looking for recovery tips, plus a few tips of my own. #1 tip, I found a small medical supplier in Ohio that has a small but powerful mucos suction…
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-Suction Machine
Hi Fellow H & N Cancer Patients and Co. Patients. One thing we didn't learn or hear about until after we really could have used it was a SUCTION MACHINE! During our last visit with the Radiation Oncologist Nurse Coordinator she asked my husband what was his worst complaint at that point. He told her that the mucous is so…
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HELP.
My husband was diagnosed with mouth cancer in July. He has a feeding tube and this is still his main source of nutrition. We are almost out of Jevity, and the insurance says it will not give us any more. Does anyone have any left overs? I'm happy to reimburse for shipping. Thank you
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Merry Christmas
Whether you are in the midst of the storm or out of the storm we all have much to be thankful for. I am thankful for all the support from this group. I finished up in March and today it seems like ages ago. However, I am always on the lookout. I wish each and everyone of you and all your families a very Merry Christmas and…
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A holiday update!
Been awhile that I have been on the blog - made a handful of postings about my experiences and wanted to update to give some positive thoughts to those undergoing treatment at this moment and those who have finished. Was diagnosed 5/2016 with T2N2bM0 squamous cell carcinoma of the left supraglottic larynx, Stage iVa…
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Intracyst hemorrhage and FNA
Hi all, My most recent scans on Nov 2 showed resolved primary in left throat and shrinking or stabilizing nodes in the neck. Woohoo! My surgeon was surprised. I was not. I told him that it was the myraid alternative therapies I'm treating myself with. My immune system is on fire with 2 sick family members in the house and…
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I know this is trivial, but...
I really miss eating like I used to. With the holidays here, I miss eating chocolate, cookies, the wonderful warm feeling of a hot cup of coffee. Anything sweet instantly dries out my tongue. Sure, I'm alive. But am I really living?
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Osteoradionecrosis - ORN
After Mike's recent post about ORN and after reading many horror stories about jawbone and teeth failing after radiation, it clicked that what is going on in my mouth could be Osteoradionecrosis. I'm certainly not one to get wound up about various symptoms but after fighting a lot of pain in the gum last week, the imminent…
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Update we got bad news last week
The cancer is back on the original site, nasalpharygeal area and involves carotid artery. His oncologist said this area is hard to operate and he also had max radiation from initial treatment so the only option now is chemo. If the cancer reduces the size they will consider the possibility to re radiate the area. His…
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My new adventures...round 2
Hello fellow cancer survivors, So, here I am, in an extended stay hotel in beautiful Somerset NJ, beginning a second round of radiation, this time with chemo. I will be here mostly weekdays until early January, right through 3 major holidays. My goal is to drive the 100 miles back home for the weekends, depending on how I…
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Met to lungs now lumbar vertebrae #1 and deep muscle in back
I have not posted for awhile, however looking for anyone out there that have experienced the same as my husband He was originally diagnosed dec 15 of head and neck cancer in right neck and a few lymph nodes. They were not able to fine occult primary, so did radiation on both sides of neck along with chemo. he finished…
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Drinking Alcohol after treatment
I am a two-year survivor of stage III tonsil cancer positive for the HPV virus. I met with the head and neck surgeon last weeks and he told me that declared me cured but also told me that I should remain cautious and continue with yearly scans and regular visits for a long time. When I asked him if there is anything I…
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ist update in months
All of my ENT and Oncology during the year have been NED, so one year cancer free and feeling better + eating better every day. Still have only gained back about 15 pounds from lowest weight. Just don't eat anywhere near as much as I used to. No problems eating as long as I wash it down well enough. Still minimal saliva…
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What do we have in common - revised questions
If you would like to help me with a little survey, cause I am curious to what we may have in common that has trigger our diagnosis. If we all look at the answers it may help. The only two questions my doctors asked was did I smoke and did I drink. And I was a smoker and light drinker. So they said that is why I got this.…
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4.5 years NED
H&N Brothers & Sisters, I got my 4 year 6 month NED today and wished to thank all the members who offered me advice since December 2011. The names change, but the overall number of members continues to grow. I liked to think every little post or comment in the forum help the non-initiated and old-timers alike. I am…
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Keytruda - An Update
Seasons greetings all. It's been a while so thought I'd post an update. Last week I commenced Keytruda treatment in Singapore where I reside. The infusion was very short ( 30 minutes ) and was not a problem. However more or less post infusion the side effects kicked in. These being achey body, headache, sweats and joint…
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Round 2
PET showed SCC has metastasized to my lungs and bones. My head and neck are cancer free, so far. I have started an aggressive chemotherapy. Every 21 days I get carboplatin, taxotere, and erbitux. And every week I get erbitux. Hopefully the mets respond to the chemo. If that fails I start immunotherapy. Down but not out.
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26 Year Old Female diagnosed with Melanoma
I was just diagnosed with Stage 1 Melanoma in my right lower eyelid. I am extremely upset and have always taken care of my skin. It's very scary being diagnosed so young. I see my first head and neck oncologist this Thursday (12/15) and am extremely nervous. I have a couple questions for anyone who has or has dealt with…
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Tongue biopsy...
I had a tongue biopsy on October 26, 2016. It's now Nov 27, 2016 and my tongue still burns and hurts. The biopsy was a fairly large excision of a "lesion" and hurt like hades! It apparently let thrush loose in my mouth and OMG! Felt like my mouth was filled with embers! Biopsy came back moderate dyspepsia something or…
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Mandibular Sarcoma Removal and Reconstruction
Left Mandibular Sarcoma Removal and Recontruction New Hello, I was treated for Nasopharyngeal Cancer about 13 years ago. I lost most of my Salivary Gland usage and taste was ruin for 2 years only. Taste came back. I relied with constant water and Biotene's Moisterizing Gel. My nasal cavity was also very dry creating…
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Vomiting first week post treatments
ok...Here we are in those days past treatement (6 days to be exact) where we were told symptoms would become more intense for a couple weeks then things would start beginning to heal. The tongue and throat are more sore, phlym is also thicker...., but the one thing we have dealt with the past two days is the phlym causing…
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Adnoid Cystic Carcinoma and side effects
Hi everyone! I am new here and looking for support. I was diagnosed of ACC in Feburary 2016 and had surgery to remove my leftside submandibular gland and some lymphe nodes. I was margin positive and the cancer was high grade. I went through 30 radiations (5x/week for 6 weeks) which ended in May 2016. I chose not to do…
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Going back to work
My husband just finished 9 weeks of chemo. weekly followed by 7 weeks of radiation (35) and 3 more chemo treatments with that. He's not even five days past his last radiation and we know he'll "cook" for about two weeks past treatments...He REALLY wants to get back to work out of loyalty and also normalcy. When did any of…
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Numb chin and scared
hi,I am a 11year stage 3 tonsil survivor,things have been well until recently,firstly I developed a sore tongue which i had a biopsy for which came back as severe dysplasia(pre-cancerous cells)this is going to be removed by laser next week..But now I have developed a numb chin and lower lip! I had a look on Google "numb…
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Where is Hondo?
?