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HPV+ 'Shame'. Do you disclose your HPV status?
Personally, it never occured to me not to be open about the fact that my base of tongue cancer tested positive for HPV. However, after meeting numerous people (online and in person) who have received treatment for HPV+ cancer, I have encountered several who have choosen not to reveal that their cancer was most likley…
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ATC free for now - what is next??
My husband's PET Scan (3 months after end of radiation/chemo) showed no new or remaining cancer. He was diagnozed with Anaplastic Thyroid Cancer. His doctor said that in about 3 months time she will simply examine him for any pain, swelling etc, but no new scans would be scheduled at this stage. But how can we be sure that…
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forever effects
Many long term effects from chemo or radiation can show up unexpectedly and will effect your quality of life. I am 2 1/2 years out of chemo and radiation for neck cancer surgery and still no taste or saliva. Thought some was coming back a few weeks ago and I was wrong. I am dealing with painful neuropathy with no success.…
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Squamous Cell Carcinoma
Hello everyone. My husband Phil was diagnosed with Squamous Cell Carcinoma in early October 2015. He had surgery that November to remove what we could, then Chemo and radiation. He lost his fight June 15, 2016. He was a Viet Nam Vet and served In Country. I applied with the VA and have given them all they have asked for,…
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Official 2 year checkup
Not much to say other than everything looked and felt good, but no scope was done due to COVID-19 precautions. I have to say that just showing up was a bizarre experiance. Two years ago as I was traveling up to "the clinic" for radiation and chemo, and at my subsequent chekups, the cancer center was teaming with patients…
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Taste and Saliva back
Cancer survivors. Had surgery March 2017. Radiation 45 days and 2 doses chemo shortly after. Golf ball size,stage 4 tumor was removed from my neck. Lost all of my saliva and taste. Dry mouth effects were tough to bear Now 2 1/2 years later I have just gotten about 50% taste and saliva back. I pray that this this is…
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Halfway finished
Hello....my husband had his second Cisplatin dose scheduled today, but his WBCs were too low to give it. He’s pretty bummed about that, because he was mentally prepared for it. He had even had an injection on Saturday to try to boost the WBCs, but wasn’t effective. Going to recheck labs tomorrow and decide. Did any of you…
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Two Year Update
Greetings, I relied so much on this group when my wife was going through HPV-16 squamos cell base of tongue cancer. So many people here helped us so much. Thank you. I wanted to share some good news hopefully to encourage others. Betsy had the surgery to remove the tumor, which was very small. They also removed all the…
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LOOKING FOR INFO AND SUPPORT
Good day to all! I never thought even six months ago that I'd be in a position to write this and I imagine that puts me in the exact position all of you once were in. I went to my PC doctor in December of 2019 and told him I was having problems swallowing my meds. He was concerned and referred me to an ENT who initially…
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10 years after radiation
It has been 10 years since my radiation therapy for tongue cancer. I still have horrible burning pain in my mouth with so many different foods and toothpaste is excruciating. Also, I have constant sore throat and earache. Does anyone else have this?
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Rhinectomy
I'm new here --but not new to cancer. I had a rhinectomy (loss of my nose) to cancer almost 5 years---yes--my 5 year survivor date is in October of 2003). I see VERY little on cancer in the nose and loss of the nose. My cancer started out as basal (sp) cell---I had 8 surgeries to remove a very agressive basal cell (don't…
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Anyone Else Facing Treatment Obstacles Due to Coronavirus? Stephenson Cancer Center Would Not See Me
I'm three years post treatment for stage three SCC head and neck, base of tongue, HPV related. It has always been instilled in me during treatment not to let my guard down and to make sure I'm doing my followup appointments because this sort of cancer has a tendency to return within 5 years. Well, I had a 6 month checkup…
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Caphasol or mugard?
I start my radiation next week. Laralyn and Phrannie, i have been all your posts and see that mugard seems to be helping you. Overall you both are doing okay and that is reducing my anxiety a bit. I read information on mugard and caphasol and looks like mugard might be better. However my doctor insists on caphasol, did not…
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Squamous Cell Ca Vocal Cord
My 66 years old mother had a hoareness voice for more the 2 months. She was told that she had a lesion Left vocal cord. After undergoing a direct laryngoscopy and biopsy of vocal cords the result was that she had traces of sq. cell ca. cancer on the Right vocal cord (strange enough). On the other hand she has been…
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laryngectomy My New Diagnosis - Scared but Also OK
Some of you know I have been struggling with this for a while. I am at the Cleveland Clinic. They are fairly sure I have stage 1 and at worst stage !! cancer of the voice box. Since I had radiation before (neck unknown primary) and even though it was 8 years ago they are very reluctant to do radiation again. The risks are…
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New member
Just started treatment for metastatic liver,lung SCC. Diagnosed last year with HPV tonsil cancer, had surgery in January 2019 and 35 rounds of radiation ,no chemo as they said it would not benefit me so I decided not too do it after 2 opions. They took out 70 lymph nodes and 11 of them where dirty, but did not leave the…
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portacath mri scan and head and neck scan
I was wondering if I had my head and neck and clavicle bone scaned for cancer. Would my portacath be seen or at least the catheter to my neck artery? I have found a scar were it was inserted into my chest after 20 years you would think it would be completly gone funny is I still can take pictures of the scar cause its not…
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For those considering Proton Therapy/Insurance denials
I've had a number of folks contact me via instant message regarding my experience with Proton Beam rads. Shortly after my treatment, I was asked to provide my story to The Alliance for Proton Beam Therapy Access Association. Sadly, only about 5% of folks wanting/needing radiation that helps protect vital organs in and…
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Deescalation of RT Dose For HPV+ Head-Neck Cancer
I know that Sloan Kettering is currently investigating reducing RT Dose to 30 Gy for Select Human Papillomavirus Associated Oropharyngeal Carcinoma. Does anyone know which other cancer treatment centers are actively involved in research, trial, or treatment regarding DEESCALATION OF RT DOSE FOR HPV+ HEAD-NECK CANCER?
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Cut Out Cancer Spot on Esophagus or? Experience Anyone?
If I cannot have radiation they may cut out the cancer on the back of my esophagus, a 1 cm spot, and replace it with a flap of my skin from my arm. I don’t think this is quite as an effective of a “cure” as radiation and chemo. Anyone know about this? Anyone had experience with this? My doctor thinks they can do some…
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Esthesioneuroblastoma
How many people had reoccurences of their cancer after treatment. Whether if was surgery, radiation or chemo?
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More FT information- amount/feeding
My Dr. rolled his eyes when I mentioned I had read One should not use more than 2 8oz. cartons of Jevity/feeding. The subject came up because I could taste the stuff- it was coming up my esophagus. Keep in mind there are 237mL/carton, and with each feeding One is supposed to flush with plenty of water to avoid dehydration.…
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Can You Get a Second Radiation? Really Scared Now!
There is a chance my neck cancer is back. It is not at all clear. I was told by the doctor at Cleveland Clinic over 7 years ago that a second round of radiation is possible. I had a nonspecific site neck cancer so they radiated my entire neck, but concentrated on left side, mostly left side. The cancer now appears on back…
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Dermal Mets...anyone?
Looking for options with dermal mets from HPV+.
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Don't know what to do anymore
Hello everyone! So, I had SCC tumor removed from my tongue March 2016. Overall, I'm very lucky. Clean margines, 47 lymph nodes removed all clear. Very lucky indeed as far as that goes. The problem is that I have been in a state of discomfort and pain with no relief ever. My primary care doctor does his best to help me with…
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Pentoxifylline + Vitamin E for radiation-induced Muscle Atrophy? Anyone?
Good day fellow survivors I'm a new member who accidentally found this site while searching for a solution regarding one of the late radiation side-effect that i have been experiencing. I was treated for NPCA on 2005 when i was 21 yrs old and there were no recurrence since then. Among some of the side-effects that i'm…
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Need advice Quick
My local ENT wants to remove my swollen lymph node this tuesday and have a biopsy performed. I received a call from MD Anderson team, asking me to wait and let them decide. What is recommended? I hate to leave it in for 3 more weeks before I can get to MD Anderson. Thanks
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We lost a very special member yesterday, 12/29/19
Hello all. I have not been here for a while but some members from here are also in a FB group. Our member known here as Phrannie, on FB as Jackie, gained her wings last night. I am pasting the post from her family so the info is correct and not miss stated. Phrannie was a great person, always positive and straight forward.…
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Neck Cancer Back Maybe and Terrifed
I have been cancer free for 9 years. I had HPV related throat cancer. At my latest visit to my local ENT he did not see anything he found that I had a very bad throat infection, no obivious sign of cancer. He then said I see someting on the left side that bothers him some, it was the infection, also scarring from radiation…
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what CivillMatt is up to
Hi H&N membes and anyone else who is reading this. I stopped in to see my ENT for a (self-approved) 8- year post treatment check-up very recently and left with a big smile and a renew confidence in my future prognosis. Let me tell you the conditions which spurred me on to go see him. One, is a little cough which always…