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Cetuximab
So I got fitted for my radiation mask. Thank God I'm not claustrophobic! I don't how those folks deal with that confinement. Anyway, my radiologist says I'm on the fence in terms of needing chemo. So she gave me information on Cetuximab as clinical trial, vs. regular chemo. She says it's less toxic. Has anyone been on this…
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Cetuximab and Radiation
This is my first post, primarily because I have not found a kindred spirit on this discussion board. On February 26, I had a cancerous (SCC) removed from my cheek. It was not in the parotid gland, but near the duct. There was no evidence of a primary source The tumor was sitting on the facial muscle, and was discreet.…
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Recurrence + Checking In
Hi all, Thought I would say hi plus give an update. Prior to my 3 year scans in March I was suffering back pain and signs of just being unwell. My oncologist booked me in for a PET scan and unfortunately I lit up like a Christmas Tree. Tumours were identified in my spine, lumps in my lungs and kidneys plus a mass on my…
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Expat living in India when diagnosed for scc tongue cancer
Dealing with the realization that my ulcer was malignant was definitely one of the hardest moments of my life. It was my first year in this new teaching job and I couldn't have picked a more caring group of administrators, colleagues, parents, and students. Immediately after revealing my condition I had a team of caring…
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My radiation journey
Hello everyone, I posted earlier about starting rads with no feeding tube. I started week #1 of 6 on May 16th and thought I would journal my progress here with you. So far, the first 5 treatments have been largely uneventful. I am experiencing the onset of dry mouth and a slight loss of taste. Water tastes a little like…
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Radiation
My path report, which is still confusing after meeting with the oncologist and surgeon's PA (he's almost always away!), says the following: Metastatic scattered viable squamous carcinoma clusters in one lymph node. Extracapsular extension. Rare atypical sub mucosal squamous clusters, squamous mucosa and submucosa with…
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nausea returned
My husband finished his 32 rads and 6 wks of Cisplatin on april 5 for cancer to his tonsil. Just prior to treatments he underwent 2 surgeries, one to remove tonsil mass and then partial neck disection for lymph nodes. About 3 wks into treatment he started on Prilosec and Reglan and Marinol to control nausea (among other…
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Loss of full use of hands from chemo
Here is my story. I am also looking for a warrior. I was a kidney donor Dec 2006. Ten months laterI was diagnosed with Sstage 4 nasopharangeal carcinoma. With such extensive testing to be an organ donor for my brother, how could I be sick. Through IMRT radiatin and very aggressive chemo-Cisplatin and 5Fu, I appear to now…
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Radiation to sinuses only for ENB
I was diagnosed with Olfactory Neuroblastoma 1/12/16 after surgery to remove what was thought to be a polyp obstructing my right nostril. I had a second surgery 2/4/16 to remove remaining tumor, and to get clear margins. It was Grade II, so while my neck was clear on PET scan I am starting 31 IMRT radiation treatments…
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Anniversary
Wow time can go so fast this week is my Anniversary, me a PEG got married 4 years this week. As much as I love Peg I am hoping and praying to divorce someday soon. But for now she is a blessing every day in keeping me alive Tim
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ISOSOURCE 1.5
I have a case and 1/2 of Isosource 1.5 that I will ship free to anyone who can use it. I called my local ACS but they don't currently have anyone who can use it. It is all unopened and in date. Private message me and I'll happily ship it. Barbara
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Radiation without feeding tube
Hello all, My radiologist at Sloan-Kettering is not recommending a feeding tube for my 30 rounds of tongue and neck treatment. Yet, I see so many here have either needed, or were advised to have one put in. Who went without it and can you tell me your experiences? I'm happy with the recommendation but worried about trouble…
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SCC, forgoing treatment, ulcerating tumor
Brand new and looking for any advice/knowledge/wisdom for my father (66 years old). He was diagnosed with stage 2 SCC under his toungue in July 2015. He underwent radiation and chemo, was in remission in September. He started having severe pain Oct-Jan, he was rediagnosed in Feb - stage 4a. He has opted to forgo radiation…
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Re-occurance of tongue cancer
Hi All, This is Manoj from India, i was diagnoised with SCC in Sep'13 just before my 35th birthday on right side of the tongue - went through surgery with flap replacement. Post surgery went through 50gys of radiation. went through multiple MRI and scans over last 31 months with no major issues apart from not able to eat…
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PET Scan done...if I can post....
Testing....testing.... I had my 3 month post PET scan Friday. When the Dr. hadn't called by last night I figured I wouldn't hear from him until Monday....or for sure on Tuesday, since I have an appointment with him. Figured I'd just pretend for the weekend that I didn't even have a scan. The little stinker called Saturday…
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New & Humbled
I was diagnosed July with Cancer of the vocal chords. Drs. consensus was 100% cure and "you'll live to be 100!" I'm 67 now and pointed out I'd only made plans up to 90. Anyway I'm now left with 8 more Radiation treatments out of 34 and my throat is so sore I cant swallow with nothing to go down let alone with food or drink…
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Hyperbaric feedback?
anyone out there gone through hyperbaric oxygen treatment? I finished my 12th dive today. I've been approved for 40. I realize healing takes place very slowly. I'm told it takes about 20 dives before you may even begin to see improvement. I'd like to know more about your hyperbaric experience. How long before you saw…
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SSD Amount
What is the average amount people get if they go on Social Security Disability ? Reason I am asking is due to my cancer has came back and I just don't know if after my second go around if I am going to be able to perform my job. I had treatment 15 yrs ago, the 7wks of radiation, 3 chemo treatments and then they removed the…
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Port is gone!
Ok, so gall bladder out....check, chemoport out....check, PEG tube out....uh, almost. Husband is no longer using it for the last 10 days, so basically, it can come out. He's managed to get back to his pre-diagnosis weight of 158 lbs. also. He keeps saying, he'll just take it out himself (like KDot- Karen). That would be…
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Stage 4 tonsil and lymphnode cancer advice
Hi My name is Mike and I have been diagnosed with stage 4 tonsil cancer and Am on the 6th radiation treatment out of 35 treatments . I guess I knew that it would be terrible but the change it taste of food and the feeling of sand in my mouth are awfull . I was wondering if anyone had advice on a beverage of a soft food…
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Nasophranx Cancer S2/S3
hi everyone! I'm not a cancer survivor yet, but I have high hopes of being one. I'm a male, 32 years old, and my biospy results just confirmed I've a squamious cell nasophranx carcinoma. Currently Stage 2, but I sense hesistancy in the doctor until the PET scan is revealed, hopefully not escalating to stage 3. I've read…
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NED Update
Hi, If anyone remembers I had a glowing subpectoral lymph node at my three months scan. Not sure if I posted here but 6 weeks later (two weeks ago) my CT was negative. I really am NED :) I elected to keep my port until my 6 month scan is negative. I guess its kind of a safety thing for me. Still having dry mouth of course.…
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Going, going. GONE!
In the vein of "kids, don't try this at home..." my husband finally removed his PEG tube - himself. Note: he is a doctor and kept telling me he could do it and it would be easy. I know KDot (Karen), who is a nurse, also removed hers. Are you guys pioneer men and women or what?! In any case I am thrilled that he finally has…
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Freaking Out
Ok, I had a squamous cell tumor removed from my tongue in 2001 and neck dissection, radiation; and a recurrence on neck (other side, tumor removed, neck dissection, chemo and radiation) in 2003. This was supposed to be in my past. Five months ago my dentist identified a new lesion, removed New Years Eve, brachy radiation…
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88 Year Old Mother Just Diagnosed with Salivary Gland Cancer
Hi everyone. My mother had a FNA last week and was told the tumor in her salivary gland was malignant. One lymph node as well. We are awaiting the complete strain results which should come in today. We are probably going to make an appointment with Dr. Marshall Ponser at Mt. Sinai in New York. Does anyone hae a doctor at…
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Normal?
Someone else just posted about tongue discomfort/pain they are having post surgery. I feel the same way but don't know what "normal" is for the situation. My tongue is driving me absolutely nuts. It's misshapen, irritated and sometimes there is a little "pulling" feeling when I move it a certain way. After surgery, there…
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Adding pictures HELP
Could someone please help a tech-deficient individual to post a Profile Picture step-by-step. Need to explain this to me like "Profile Pictures for Dummies". Thank you
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Brachytherapy For Base/Posterior of Tongue
Hi! I have just been dx with a base of tongue tumor (posterior in oropharynx:not oral tongue) and was offered the choice of IMRT with "mild chemo" or HDR brachytherapy and I was just wondering if anyone on CSN have received this treatment and how it has impacted your swallowing? This will be my second time going thro…
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New to Forum but can't seem to get my messages posted. Any help?
Lets see if this gets posted
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Burning Sore Mouth & Tongue Now HBO
its been quite some time since I last posted. I'm back with an update and hoping to find others that can relate to my experience. First, and most importantly, I am now 21 month NED from tongue cancer. What a journey and I'd like to thank everyone for their incredible support. I'm feeling much better, but I continue to have…