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First day of radiation tomorrow
Hello everyone, I have been following this forum for almost two months now and have learned so much from everyone's experience. I'm a 26 year old that was diagnosed with mucoepidermoid carcinoma two months ago. The tumor was located on my hard palate and was surgically removed about a month ago. my staging was t4n0m0.…
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Which radiation treatment is best for SCC tongue base tumors and lymph nodes in neck?
Hello again, I just had my surgery 2 weeks ago as am awaiting MD recommendation for the plan of care but imagine it will possibly be rad/chemo. We have IMRT, and TOMO nearby (within 1 hour) where I live. Any experiences with TOMO or IMRT or Proton therapy? I am T-1 N-1 M-0 and HPV16 +. Newbee on this site.
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My mom finally received her treatment schedule.
Hi All: My mom finally received her treatment schedule after 2 months of the run around. She will have radiation every day and chemo once a week. They gave her three choices for inducing the chemo and she chose an injection via the vein. Also, the doctor prescribed her Zofran for nausea. He said the Enmed was too strong.…
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Massage therapy
Question: I had a neck dissection six weeks ago and was able to go home without any pain meds (I know, I've been blessed). However, I've noticed a tightening or a knot in my right shoulder and shoulder blade tension lately. Do any of you know what the thoughts are regarding massage therapy? Is it okay? I heard that it…
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extrascapular involvement on my lumph node- damn!
Finally heard back from the surgeon last night who had said following surgery the 1 lymph node that was + for SCC popped right out and was encapsulated. He did have the pathologist look carefully around it an they found extrascapular involvement so now I have to have rad/chemo for sure. Anyone else have this on the path…
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Easy, peasy. . .
After IMRT, Cyberknife was easy, peasy. 5 days, 40 minutes each time, much quieter. Meds administered after--steroid and anti-nausea. Saturday was good, I had a pedi with my sister! Sunday was not so good, headache, pain. . . I know that I will have it tomorrow or Thursday because of the steroid. Shouldn't have sores in my…
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Exercise/Healthy eating
I have been reading some posts and can't help but throw some thoughts out there about exercise. I think as cancer survivors depending on what cancer we battled determines what we are capable of accomplishing. However exercising is not for everyone. I think a healthy lifestyle is as important if not more so than exercise…
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Tongue Nerve Damage After Neck Dissection
I had robotic tonsil surgery (cancerous T3 N0 M0) and total neck dissection - removal of 131 lymph nodes (no cancer) ...since then I have Hypoglossal nerve damage - half my tongue is completely numb - when I stick out my tongue it points towards the dead - damaged side. The pain and discomfort are constant . When just…
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PET UPTAKE 2 1/2 Months after Biopsy! Cancer or not?
Hello, I had a small BOT biopsy 2 1/2 months ago and just had a PET scan that showed BOT uptake of 4.1. I have not been diagnosed with BOT, we're exploring as my doctor said. I have had pain in BOT for 8 months now and had 3 CT's, Tonsillectomy and 2 small biopsies. Should I be concerned with the 4.1 uptake. The…
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Met NED Yesterday at MDA!!!!
Friends, After getting the scan on Monday (whoa...my first!!! -- not as bad as my imagination made it!!) and then waiting on the ENT for three hours on Tuesday...he handed me the report and there he was --- NED!!! Jumped up and did a happy dance right there!! Then gave my wife a big ole sloppy kiss! So now enjoying the new…
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First day rad
My first day at rad today. I was apprehensive early this morning not knowing what to expect, that included the hospital transport. I needn't have worried, the transport turned up on time, I was the first pick up 8.30 then we picked up another head and neck patient, followed by a terminal stomach cancer patient. I was in…
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Coborns recheck today
Well I go back in this morning to my first medical oncologist. The Drs. at the University of Mn. were so accommedating in helping facillitate this for me. Some family members are confused on my choices....I giggle and say welcome to the party guys ! Please excuse my spelling and wording as some days it's harder to…
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Depression after Treatment
I got to thinking as I read this. People post from time to time on this board who are clearly depressed, or post about someone who is clearly depressed. It makes intuitive sense that depression frequently follows treatment for this disease, but I was unaware until now that anyone has actually looked at it. I know this: no…
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Newly diagnosed SCC tongue base T-1N-1 HPV16+
Hello survivors, I recently had surgery (sept 4) a partial glossectomy (TORS) and a left neck dissection. My surgeon at Vanderbilt meticuously collected slides of tissue from either side of the tumor, below it and several other places and found no evidence of cancer in any margins any where else on the tongue. He removed…
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Neuropathy
Hi all, apologies for my slackness in keeping active on the site with regards to posting. Fair to say more of a observer then participator. I have been working on getting my systems back online post treatment and as reinforced by all the comments / posts on this site, the majority of things do come back in time for most.…
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Still Clean
UPDATE: Saw my ENT/Surgeon today at nearly 5 months post treatment. Scoped, poked and prodded. All looks great! No concerns. Next appointment in November. Off the narcs, still healing and coming along nicely. "T"
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Is it normal to have surgery before radiation?
Hi. I'm new here. my brother was recently dx with stage 4 ssc of tongue and tonsils. He had a pet scan Friday and will get the results Monday. My understanding is that if the cancer has not spread, he will have a surgery to insert a feeding tube and then a few days later he will have a 12-15 hour surgery to remove the…
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Base of tongue Cancer-Tongue Pain
Good morning, Did anyone have any tongue pain prior to getting diagnosed with BOT cancer? It seems most of you had other symptoms or enlarged lymph nodes, so just curious to see if anyone had tongue pain at the base of any kind. Thank you, Wellington
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Oral Surgeon this morning **UPDATE**
On my way to see the oral surgeon. I have a tooth (back top molar) that has broken 4 times. Everyone (ENT, RAD ONC, dentist, etc..) want it extracted. It's on the opposite side of my surgeries and treatment. He's going to see if I can open my mouth enough to get the darn thing out. Silly as it sounds...I'm terrified. I am…
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Recovery ~ a straight line or setbacks?
Well that nice little bit of white foamy saliva that I had for a few days, and that I posted on a couple days ago, has disappeared. I'm sure that since it showed up once it will show up again. But I have had dry mouth for the last few days and don't understand it. Nothing has changed; I'm still eating and drinking all the…
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in the dark
Hi, Thank you to everyone here for sharing your experiences. I've been reading posts and have learned much about head and neck cancers, and feel better for the knowledge. This doesn't help me understand why a friend from work told me in early April he has Stage IV throat cancer, and won't let me support him. Maybe my…
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Determining that you're no longer HPV positive
I was asked a question not long ago, how will I know that I'm no longer HPV positive? I don't think that there is a test for males, in fact I think that there is only a test for the HPV DNA in harvested tissue, and I think it is usually cancer or pre-cancerous tissues that will exhibit it. Anyone know of a test that I…
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Scans Tomorrow and Scared to Death
PET scan, and all docs tomorrow. I am scared to death. Please pray. Sandy
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Silver linings
With all the complaining that we cancer patients and survivors do (and much of it perfectly understable), do we sometimes overlook the positive things that can come from it? I have struggled with my weight all of my life, up and down the scale like a yoyo. At this rate with my compromised saliva I believe I may never be…
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Colleen Passed...
Thanks for the thoughts, prayers and well wishes for my sister, myself and my family.. Colleen passed away comfortably yesterday at 1:01PM. John
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BURP
Can youNew drink alcohol through a PEG, ...don't drink, but this bizarre thought ran through my head reading of your experiences with an alcoholic drink . I'm told with a PEG you only taste whats gone through the PEG when you 'burp'. This thought amused me 'B..U..R..P' umm that was nice ha ha. Anyone have amusing stories…
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Thrush
my 3rd bout with this crap - i am going to have to really research what i can do. My wife is telling me pro biotics - i think there is a pill form and it comes in some yogurts. it may have something to do when i drink alcohol. my daughter got married over the weekend and i over indulged. had a great time. but a day later…
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Duggie Jeff & Skiffin John ~ ShowDown Tampa
Shelley and I had the pleasure to meet up with Jeff and his son this afternoon in Tampa and swap a few stories...., anyones ears burning around 2:00PM or so..., hmmmm. We had a great time, and enjoyed some good cold frozen yogurt on a hot Saturday afternoon.. Next time, treat is on me Jeff...., Flounder time Gandy Bridge…
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Kidneys
When I had the high dose cisplatin back in 2009 it did damage to my kidneys, my creatine levels were around 2 to 2.2 for the following years. Last year when I was hospitalized for my lung surgery, it was 1.9. Had it checked again in May it was down to 1.79. Had it checked again last Friday and it's now 1.62. Did anyone…
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Eurbtix and Gammaknife
Hi Everyone haven't been here for a while my husband has nasopharengyl Carcinoma the cancer has not metastasize. At first the ENT didn't not give us any hope and gave my husband a year to live. His oncologists disagreed with the ENT and said that the doctor should have never told us that. My husband has just finished 6…