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Update on LitlCJdoll:
Crystal asked me to share her story with her friends here on CSN. She is currently in a Hospital, but may be going to Hospice, soon. She tells me that her lung issues make it very difficult for her to breathe. It has been decided that any treatment for her new Cancer doesn't offer probable extension or quality of life. As…
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Osteoradionecrosis
I've come on here to post a new thread regarding osteonecrosis as there only seems to be older stuff in the hope that I can get some recent information. After having squamous cell carcinoma (cancer in tonsil) I have been living with osteoradionecrosis of right lower jaw. I have had 3 debridements but the bone is still…
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Things Move On
I saw my ENT from Hershey last week for my 3-month follow-up and scoping that has been going on since my release from the hospital in late 2019. Thankfully all is clear. And my ENT agreed to extend my next visit to 6 months out instead of 3 months. Nice relief to get the all-clear on a visual. I have also taken my ENT's…
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Side affects - Calling upon members!
I thought this would be helpful for people that are doing research that is about to go into treatment or are in the middle of treatment, or even after. I had a lesion on my left vocal cord. It was stage 1a, but the RO after that wait with everything decided to stage it as a T2. No node involvlement. I didn't have enough…
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Hoarseness
It's been 4 months since my last radiation treatment for BOT cancer. Tumor is gone. Pet scan scheduled in a month. My main problem is hoarseness and dry mouth. My ENT says a dry throat can contribute to a hoarse and raspy voice , but I haven't read many blogs where hoarseness is a problem. Is any one out there finding his…
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Year +5, my saliva is back.
I did 35 IMRT/carbotaxol for stage III tonsil back in 2016. Last treatment Jan , 2017. I was NED at my 5 year in September. I did get my taste back, in about March 2017. I still have periodic muscle spasms in my jaw. I have been using Xylimelts constantly for the last 5 years. A few weeks ago I was working in the yard,…
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Newly diagnosed and new to CSN
Greetings all, I had what was thought to be a granuloma on my right vocal cord. A biopsy had now labelled it "Invasive keratinizing squamous cell carcinoma" . The lab report also says, " The tumor is positive for p63 confirming squamous cell. P16 is negative." Being diagnosed just yesterday, I don't know what any of that…
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Cetuximab
Anyone in head and neck hear of this treatment and can give some feedback? Was informed that this is last hope and was only used as a extended life thing and to top it off was only 10% effective, my oncologist that’s been one of my positive outlooks now says we’ve gone as far as we can go, I kinda see why this is on 10%…
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2 months after last radiation treatment
I was a non believer when my radiologist at MD Anderson told me that it could take 2 months to have the effects of radiation end. I'm so happy to say that it's now approaching the end of week 8 and no more damn ulcers!!! Hallelujah! I am noticing a funny thing and that's the back of my mouth, call it the roof of the area…
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Immunotherapy and Keytruda
My mother was recently diagnosed with a recurrence of her jaw tumor. This time it's floor of the mouth, localized. We went through double mandibulectomy and fibula free flap, chemo and rads the first time two years ago. This time, she is starting treatment with Keytruda and her oncologist is very optimistic. I did not see…
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6.5 weeks after last radiation treatment
Hey folks, I have not been on here in a while. I went through some unfreaking real hell at week 6 through week 8. I know everybody is getting different sorts of treatment but I was an MD Anderson patient so I had 33 radiation treatments and I only made six out of seven chemo treatments. It is now 6 and 1/2 weeks after the…
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limited range of motion - right arm
i had surgery last August, TORS on the tongue and removal of 21 lymph nodes in my right neck. completed chemo & rads early december. i've noticed in the past 5-6 weeks or so that i can't raise my right arm straight up - pointing to the ceiling. best i can do is have it come level to the floor, pointing to the wall. there…
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Chemo and Immunotherapy for life
My husband's new cancer(s) have been deemed to be inoperable as the surgeries would not be beneficial without the ability to have radiation. He had the lifetime max of radiation in 2016. He will be taking part in a study at Siteman Cancer Center in St. Louis, MO. He will have chemo and an immunotherapy drug for the rest of…
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Dematologist soon after Radiation?
I was wondering if any of you started to notice new moles, spots on their necks real soon after radiation treatment? It's only been a month and a half since my treatment ended and I can feel spots that weren't there. I feel as though I need to get seen by a dermatologist. Did anyone else notice this so soon? Where I live…
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When to use Biotene, when to use salt & soda rinse...
I guess I need a little clarification from you guys that have already done it. I am fixing to start my seventh week of treatment and I am just now getting the sore-ish throat and tongue. Really my tongue hurts more than my throat. I had stopped using the biotene a while back, because it didn't really seem to work to well -…
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HPV16+ SCC diagnosis - is chemo really necessary?
My husband was diagnosed with HPV16+SCC in Nov. 2021 and had surgery Dec. 2021. Tissue (and tumor) removed from the base of his tongue, plus neck dissection and 6 nodes removed (w/extensions). He will soon begin radiation treatments on both sides of his neck, but the rad doctor told him chemo may not be effective on his…
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Hey Everyone. I'm new here
I just wanted to introduce myself. I'm Pete, I'm 46 and last Thursday, I was diagnosed with cancer on my tongue. I've felt pretty alone through everything so far as I don't have much family around me. On Friday, I had a CT scan to see if the cancer spread to my lymph nodes or lungs. On the 18th, I'm having the rest of the…
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Oral Radiation & Metal Fillings
I was diagnosed and successfully treated for a SCC on the base of my tongue and tonsil wall about 3.5 years ago. I had 33 radiation treatments. About a year later, I had two molars extracted in the "ground zero" area of the radiation and promptly developed osteoradionecrosis. The ORN has made the cancer seem like a picnic.…
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Questions from you folks with experience
Hi, im having a few problems since my surgery. I had a SCC stage 1 tumor removed from the bottom of my mouth in September. Then found out I had precancerous cells scattered elsewhere under the floor of my mouth. So I was told that there was a 95% chance I would have no problems because it was caught so fast. Then I agreed…
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Cetuximab aka Erbitux
Does anyone have experience with Cetuximab for Head and Neck Cancer? My husband has tried three studies and each study failed him. Now Cetuximab alone is being offered. I don't know if it alone can help which is why I'm looking specifically for H & N cancer patients on Cetuximab alone. He has been told he will be on…
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Pharyngoesophageal Stenosis - Long term effect of chemo radiation
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teeth
Had my first teeth xrays since finishing my Tonsil Cancer treatment last September. I was a little nervous after reading all the possible issues with teeth after radiation. Dentist said all looks excellent with no decay and gums look perfect. My treatment consisted of 35 rads (70 greys to right side and 54 greys to left…
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Foul smell during radiation
I am in my first week of treatment for Stage II nasopharynx cancer. Everytime during IMRT radiation, I notice a pungent and foul odor. I haven't smelled it before, however, I can best describe it as trash / burning blood. I have asked the docs and the attendants about it. I haven't gotton any reasonable explanation. The…
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Throat cancer?
My throat has been like this for awhile (first noticed in august) but I chalked it up to dental problems. I also have swollen lymph nodes.
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Biopsy confirms Tonsil Cancer HP16 positive
Well, even though I “knew” it is still a gut punch. I have read up on tonsil cancer and have a good idea of what is to come but I’m still scared and anxious. So the next step appears to be PET scan then, Off to the Races!
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Methylprednisolone during H&N recovery?
Hey everyone was prescribed methylprednisolone for the coming hell of week 6. I never took it until week 9 starting on Superbowl Sunday. I think this was the magic bullet for my quick improvement. Has anyone here taken a round around my recovery time and if so what happened when it wore off?
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How to wean off feeding tube - or when can I eat real food?
I’m really tired of my feeding tube but I can’t seem to find enough food that I’m able to eat. Basically, (and I realize many of you have been here), if it’s not wet it’s not going down my throat! Today marks four months (17weeks, 3days)since my last radiation treatment for BOT Cancer. My mouth was on fire with swelling…
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Has anyone tried hyperthermia treatments?
Trying to find out if anyone has experience with hyperthermia treatments. Thanks.
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Interesting Article
In Pdf form from the American Cancer Society here is something some of you may find interesting and it is pretty extensive. There is a menu showing topics on the left side. Cancer Treatment & Survivorship Facts & Figures 2019-2021 There are parts covered that I think would be of interest to those starting treatment and…
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late check in for 2022 almost 10 years since diagnosis
hello to old and new friends....want to let those recently diagnosed, that this cancer is not only survivable, but beatable too. I got my diagnosis of Squamous cell carcinoma, small tumor on rt tonsil, metastasized to lt. Standard chemo with cisplaitin, and radiation. I had immediate permanent severe hearing loss with…