-
Low Dose Radiation Treatment for Osteoarthritis ??
After I completed rad & chemo in 12/21 my rad doc said I should avoid all radiation, if possible, going forward. He is now pushing LDRT for my OA in my thumbs (after hearing that while I have OA in my SI & SC joints on the right side - there is no pain in the joints themselves). From what I could find on the the net it…
-
scaring on vocal cords - 3 1/2 years post treatment
saw rad doc this month for semi annual check up. (NED) he said he saw some scaring on vocal cords, which has never been previously noted before by him, the ENT surgeon and the speech pathologist. He did not offer any other info about it. I didn't think to ask him about this in more detail (I got distracted by his sales…
-
Val Kilmer's Throat C, Trachea, and Pneumonia
News just broke about his death, due to pneumonia. Think he was treated in 2015, but uncertain about the details and if surgery was involved. What is certain pertains to aspiration and pneumonia. FT-dependent since 8/2019 because of Rad damage to the top 1/3 of my esophagus, everything I swallow goes into my lungs. Thus, I…
-
HPV P-16 Throat Cancer Survivor-Am I Putting My Sexual Partners At Risk?
I am NED for over 2 years. I was HPV positive P-16 Stage IV throat cancer. I had a tonsillectomy, 35 radiation treatments, chemo, and a modified radical neck dissection. Then the wife filed for divorce. Now, I'm now out on my own entering into my first sexual relationship, post-divorce. The Drs told me I could've been…
-
Carotid body tumors need help finding specialist!
My husband is 40 years old and doctors just found 2 carotid body tumors on a ct scan, one on right side of neck and one on the left. Surgeon that requested ct scan told us today to do our research and get him to a specialist in these tumors as he is not and doesn’t know anyone around here that is. We are south of Buffalo…
-
Skin care around the PEG
Any tips on care of the skin around a peg? The dressing got wet with drainage and in no time the skin around the peg became quite reddened and raw. I have been cleaning with a baby wipe and drying the area then applying aquaphor ointment.
-
PEG tube pain
Had PEG tube put in on June 1st and am healing slowly. Still have some blood on gauze when I clean and change it. I am sore at the location however, the real pain I am having is to the left of the stoma... about five inches away. It is like a muscle spasm that only lasts a few seconds at a time. I called my Gastro doctor…
-
Burning & Stinging when Eating
Hi, I'm Lisa. I am 1 month out from treatment for tonsil cancer. I had a PEG tube put in at the 3rd week of treatment due to horrendous mouth sores/Mucusosis. At one point, I could not even drink water. Since finishing treatment ( 7 wks Radiation, 6 chemo) I have been trying hard to introduce foods and drinks by mouth to…
-
Post-surgery Issues
Before the cancer developed on my tongue, I had 30 years of recurrent mouth sores. I had allergy testing (all negative), but I was able to identify some foods that triggered the problems including spicy foods and walnuts. This past September, I had a major outbreak, but this time, one spot did not heal - it turned out to…
-
Adenoid Cystic Carcinoma
My name is Debbie. I was diagnosed with ACC in March 2003. I had a large portion of my upper palate removed and now wear an obturator. I don't have anyone in my community that has gone thru this. I had 6 weeks of radiation. I just want to meet someone who has this disease and visit. I feel all alone out here.
-
Mucoepidermoid survivor
Hi! Could you help me? My husband is undergoing intermediate mucoepidermid treatment and I would like to have news about how it is to deal with the treatment, if there is a cure
-
Memorial Day May 26, 2025 We Honor and Remember our Fallen
Monday the 26th is Memorial Day, a day set aside to honor our country's servicemen and women who died in service to our country and who gave their all. These are the ones who gave their lives for their country-their last full measure. They deserve no less than the highest honor and respect. Participate in the National…
-
Stage 1 Cancer under left side of tongue front of tongue
Has anyone been diagnosed with tongue cancer under the tongue - will have operation on June 3rd. Is having tongue cancer in the front of your tongue worse than having it in back of the tongue. I never dealt with anything this before and just wondering. Can you all tell me the experiences with tongue cancer and what I…
-
Swelling in Knees and Ankles Following Chemo and Radiation
New to this network and learning so much as I assist my husband recovering from TORS and the 6 week chemo/radiation that followed. TORS was a breeze compared to the trauma of radiation and chemotherapy. His last radiation treatment was April 28, 2025 and while we expected the dry mouth, difficulty swallowing and general…
-
Immunotherapy for Squamous Cell Carcinoma, base of tongue
Brief recap: 2007, SCC left tonsil/lymph gland, minor surgery, 35 rads, 7 Cisplatin Chemo, still all clear last PET 3/2025. 2022, SCC right tonsil, TORS for tumor, RND of the neck. No chemo, 30 rads. PET 2025 shows reoccurrence near base of tongue. Surgery and radiation not an option. Waiting on appt to discuss…
-
Are we no longer having a Roll Call?
Didn't see it but may have missed it. Jim K
-
Any information about de-escalated adjuvant radiation therapy (DART)
This is a follow-on to an earlier topic that I started, but since this is focused on the de-escalated adjuvant radiation therapy (DART), I thought I would make this a new topic. I was diagnosed with early stage HPV+ cancer on my right tonsil. After conferring with my surgery, chemo and radiation doctors it was recommended…
-
Have to get a molar pulled
I am a thirteen-year survivor of nasopharyngeal cancer. Through the years, I have spent thousands on my teeth. I had a molar that had a crown on it. It decided to come loose and fall off. Now I need to have the root pulled out. My dentist has put me on two meds. Pentoxifylline and vitamin E to ward off osteoradionecrosis.…
-
Webinar: Head and Neck Cancer Survivors - Managing Function and Quality of Life
The National Coalition for Cancer Survivorship (NCCS) hosted a Cancer Policy and Advocacy Team (CPAT) webinar discussing quality of life for head and neck cancer survivors. The treatment of head and neck cancer (HNC) often involves surgery, radiation, and chemotherapy. This treatment is critical for controlling or curing…
-
Asymmetrical fullness of the right lingual tonsil with effacement of the right vallecula
I am sorry in advance for being a pain I am just worried. CT scan showed Asymmetrical fullness of the right lingual tonsil with effacement of the right vallecula. PCP sent me to ENT. ENT says TMJ and reflux. I have had ear, throat and neck pain and swelling on the left side for over 3 months. Occasionally my lymph nodes…
-
Just found out yesterday
Of all days to get results of cancer was on April 1st! My Oral Surgeon told me that my biopsy came back with cancer. Keratinizing squamous cell carcinoma on the side of my tongue. About 2 years ago a bump appeared on my tongue and my dentist told me that he thought it might be from HPV so he removed it and biopsied it. It…
-
sex after treatment for HPV P16+ cancer - for married & single ex-patients
Are there any restrictions on sex (in a committed hetero relationship) after treatment? Is there any evidence that post-Tx sexual relations can cause a reoccurrence of HPV16+? Also - for patients treated for HPV16+ who are not married & single - were they to have multiple female partners - is there a risk of reoccurrence…
-
So the Real Journey Begins Today
After 3 months of questions and testing and waiting, my husband is scheduled for a modified neck dissection this morning. We have to be at the hospital at 5:45 am; of course it is only 3:30 and I am up and dressed and ready to go. Sleep? Oh no. 😟 It’s not than I am scared, I am beyond that now, just couldn’t sleep. A song…
-
Dental implants post recovery
It's pretty surprising there are no threads on dental implants in this group. Well, here's my situation. Brief backstory - My cancer treatment, radiation and chemo, was a decade ago and successfully treated the cancer with very few long term side effects. Two teeth were extracted as a precaution prior to treatments with no…
-
Taste - Post Treatment
So, I am now 13 days post treatment. Everything seems to be healing well. I think I may be one of the lucky ones, as I have been seeing signs of improvement for about a week now. my concern is with taste. I've had no changes regarding my taste... still taste nothing! I was reading some posts and have become confused as to…
-
Using Zinc for Return of Taste?
Hi All Again, I forgot to add in my last post of several days ago that at some point near the end of my husband’s base of tongue SCC treatment (ended 10/24/23) that I was searching on this Board about taste returning. Someone mentioned they took Zinc supplements and it helped them. Scientific I don’t know but we asked his…
-
Happy Easter Wishes to All 2025
This year I am wishing everyone a wonderful Easter as best as I can on here.. I had posted this message in a different form, and this site policy caused it to be removed. I cannot tell you the truth, or my post will be removed. For that matter this one may well be also I am not allowed to post XX xx xxxxx, xx xx xxxxx…
-
Pneumonia
I managed that thing that makes us all careful of what we eat and drink.. aspiration pneumonia. Apparently I am allergic to doxycycline, as I found out by hitting the floor one to many times! I am ok'ish now, except the sore throat will not go away! I was already dealing with a significantly smaller oesophagus (less than 1…
-
Tonsillar cancer scanning
I was treated for Tonsillar cancer stage 1 the fall of 2023 now recently I was diagnosed with stage 4 cancer that was metastatic from tonsil to lungs and bones. I had a scan 3 months after my tonsil cancer treatment and it was clear, my doctor elected to scan me once a year after my first 3 month scan. 10 months in I had…
-
Radiation Fallout
Long time member of CSN, but have been absent several years. 10 years ago husband diagnosed with stage 4 nasopharyngeal tumor. Treatment was successful in eliminating the cancer but radiation effects over the last 10 years have piled up. Hearing loss, no longer able to swallow so PEG tube feeding, tracheostomy, balance…