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John (Skiffin) Update of 5/16/14
Just a quick update on our bud, John. He coninues his recovery, but has developed some sort of infection that they are culturing so they can find the right antibiotic. in the meantime, he has been suffering with bad bouts of nausea and just generally feeling poorly. So, continued prayers and good mojo requested. We need…
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Can you open your mouth?
I am 2 years out of treatment for NPC and still can't open my mouth big enough to eat a sandwich. I was aware trismus comes with the rad treatmeant so I exercise daily with a TheraBite device but not really helping much. My question is if I need a tooth pulled how does the dentist extract it when I can't open wide enough?
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I am still here
I just celebrated two years without David and my second anniversary would have been on Monday. Each day without him is getting a bit easier. For those who haven't heard I moved to Lexington, KY. Wells Fargo did indeed foreclose on David's home; however, God provided for me. My new home is smaller, but it is perfect for me.…
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hey Guzzle and thennies61
yall are getting close to being finished with radiation right? been praying for yall...i am sure there are more but you two for some reason have been on my mind..my hunny finished friday and is on the way to recovery..odd to have 3 weeks off...before we have a dr appt...seems like we have lived there since January! touch…
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Update - scan results
Hello all, hope you are all doing well :) Happy Mother’s day to all mums here, even if it’s a bit late. Good news: The PET scan, CT scans, MRIs all came clean no other tumor anywhere else :) Bad news: the bad news is that i still have 2 cm of tumor at the skull bottom, still didn’t memorize the exact medical name of the…
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Jawbone Replacement due to disintegration of radiated jawbone
I have done tons of research on the best doctor and the best medical facility to have this procedure done. I have very strong opinions about this but hoping not to offend anyone would be willing to share them if there is interest. I was initially diagnosed with Stage 4 oral cancer of the tongue in 2002, I have had 5…
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"Blue" Day Today
Hello All, I am still here in the shadows watching over each of you. Today was a rather "blue" day for me as I recalled what I was doing on this day last year. Tomorrow at 9:17 AM, it will be one year since my wonderful Ron left on his final journey. I have to believe he reached his destination. This last year has probably…
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Neck stiffness
Hello everyone. Has anyone experience neck stiffness with muscles being very tight like beef jerky? Any advise or solution to the cure or management? Thanks. PM
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Teeth
I went to the Dentist today for a cleaning, and mentioned that I'd noticed part of a problem tooth appeared to be gone. Yep- another Crown at $957 is in the works! And they're talking about the need for 3 more Crowns! Yikes! I did some figuring awhile back, and by my count this next Crown is gonna put me up to the $8-9K…
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side effects of erbitux
Hi guys Only two more days of radiation and done and 4 weeks of erbitux.Anyway over the last week or so started to get what I thought was acne on the back of my neck.But seems that my trach coller has rubbed it.My speach specialist looked at it and took a pic of and went and seen the nurse that works in the wound division…
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Just a quick Hello
I'm 5 weeks out from a total knee replacement , all is going well, PT 3 days a week...since my office is quite a drive away my surgeon only wants me to go in 2 days a week for 4 hours each day, the other days I work from home. I started back to Crossfit today, baby steps , mostly upper body, I forgot how amped I get…
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IMRT for 82 yr. old Mom
My Mom has been diagnosed with scc oral cancer (after finding some red sores in the back of her mouth where her back teeth use to be) biopsy and ct scan determined it was Stage 0. Surgeon wants to do the fibular flap surgery, Rad oncologist wants her to get 30 treatments of IMRT. He feels certain this will get rid of the…
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Radiation & Teeth Hyperbaric Oxygen
my treatment starts in June 8th. They are telling me it will be 5 days in patient, 9 days home which will repeat 4-6 times. I'm not sure which it will be but am hoping for 4 cycles. So, total is 8-12 weeks. Chemo each day and if it's 4 cycles, rad 2x per day. If it's 6 cycles, its rads 1x per day. If I'm correct 30-40 rad…
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PEG feeding tube
I was refused MRI scan because I have a feeding tube. I thought it was all plastic but was told there may be metal on the inside. My tube is all plastic outside with a white triangle with a blue clip against my stomach with a plastic pipe coming out. I don't know what is inside. Is there anyone who knows the answer. I have…
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Happy Mothers Day
On this special day, we should spend a few moments to remember and give thanks to the many moms on this forum. There are many Mothers Day songs, but looking at another direction, I think the below song is appropriate for this occasion. http://tiny.cc/hm9nfx Although it was meant for the man above, the first verse can also…
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Skiffin Update 5/7/14
Well John is having a bit of a hard time getting comfortable at home. He has had a fever (got antibiotics for that); has had some acid reflux issues (got meds for that), still having some nausea. This was major surgery so it is going to take a while to get his old abi-normal self back. So... some more good mojo is needed.…
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Benzymadine/Gelclair
Friends, end week three and bit of a sore throat. Been issued with co codemol (don't need just yet) but also benzymadine and gel clair which are a mouth wash and something that put a coating on your mouth for ulcers. Any knowledge of these products? Cheers, G.
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Symptoms after tumor removal
My Brother-in-law had an extraction surgery about 3 weeks ago. He was able to begin eating and chewing food in the last 8-9 days. When he chews he is getting a shooting pain that goes from his ear into his jaw. The pain starts just before he puts offd in his mouth and stops about 8-10 min. into eating. It is on the side of…
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Oropharyngeal Cancer
Hi, My brother-in-law was diagnosed with Oropharyngeal Cancer about a month ago. Stage 4 and spread to the surrounding Lymph Nodes. The Oncologist did an 8 hour surgery to remove as much of the tumor as possible. It was large and difficult to remove. He said the surgery was very invasive. He said he was able to get most of…
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Away for a bit
Going north to Portland, Oregon for awhile. My daughter is having surgery, she has lost 133 lbs. and the extra skin has been causing infections. We will be able to help with 20 month old granddaughter :) . Hopefully it will be spring, my husband has a lot of honey do's for her house. Just wanted to let you know I won't be…
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Update on Abnormal PET/CT
Met with R/O today and now have written report from radiologist. Anyone ever have this result? "Abnormal hypermetabolic activity along the course of the sternocleidomastoid." Could be related to radiation therapy and/or surgery. Not possible to exclude tumor infltration. SUV values exten up to 5. This was the side of my…
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my mouth and radition
Hi everyone well I'm down to my last 4 radiation treatments but wondering about something.My mouth just filling up with thick slivia.It gets worse the more I try to talk.Have been hoping it would kind of ease up but have had this problem even before the operation.Makes it even harder to try and talk with slobbing all…
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Tomorrow is my hunny's last day!!!
He will finish up all his rads and chemos tomorrow we hope..they mentioned maybe some more chemo after because the node isn't shrinking like they would like it..but we will cross that bridge if we have to then...its been a long tough road and our baby girl graduates from college on Saturday...prayers please that he feels…
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2nd Opinion? In Patient / Out-Patient Chemo
I need help! 1. Has anyone done chemo out patient? How did that work out? 2. Please tell me the chemo drugs that were used for you. 3. Has any one gone to the University of Chicago Medical Center, and if so how was your treatment? 4. When it came to chemo recommendations, were your drugs tailored to you specifically or…
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THE TUMOR BOARD! Hard Day
well....today I met with the "team"....THE TUMOR BOARD. The surgeon, medical and radiation oncologists. People, I never in my life thought I'd ever meet. After my neck dissection last week, it was first to the surgeon who removed the drain and told me that it was one lymph node. An adjacent lymph node was fine. I was…
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Neurontin
My husband has been complaining of nerve ending pain in his feet and now his arm. Our hospice nurse has been trying to get him to give Neurontin a try to see if that helps. Has anyone taken this medication and what problems did you have with it. When reading the side effects it scares me especially when it talks about…
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Shout out
to Skiff, hope you're mending well and behaving..the weather in Ohio is finally getting nice, my son & D-I-L-caught about 15 perch last weekend at Lake Erie. Just a small sample of things to come, I hope. I'm ready for some Walleye fishing and eating..take care
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Esophageal Stretch
Has anyone needed an esophagel stretch almost two years after the last one? My neck feels tight like someone has their hands around me, not strangling, just lightly squeezing. I have no problem swallowing (choking on the other hand...the curse of chocolate!) I was first introduced to "NED" in Oct. 2011 and as of Dec. 2013…
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Treatment is over!
Hello, I have finished treatment 32 rads and 1 cisplatin and 4 rounds of erbitux. Now comes the healing part. I really hope that my taste comes back, because right now everything tastes like chalk. I am pushing myself everyday to do as much as I feel I can. The attitude is still positive considering how awful the last…
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will there be another tumor in my body!
Tomorrow i have MRI for Sinus & Skull, CT scan for Head, Neck and Chest. And Pet CT... Im sure all of you here went through this in a way or another. But for me its still so overwhelming!! April 3 I had my first surgery ever, thinking that it’s nothing! Then I found out I had Olfactory Neuroblastoma, a rare tumor… and…