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CSN ~ What It Means To Me.....Share Your Story
I've been thinking about this lately, and myself and some close survivor/caregiver friends have been discussing these same things. What CSN Means To Me CSN is a place that I find comfort in... I can vent, I can share, I can throw out things in my life that are cancer related, survivor related, or just life after…
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NED (and: a song for all y'all)
Had another PET/CT scan result today. As with all the others (with the exception of an initial false positive confirmed as such by biopsy) it was NED (oddly, none of my actual reports have ever used "no evidence of disease," but it's the accepted shorthand here), thank heavens. While en route to the doc office, in the…
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How long did it take to eat spicy food
I am 9 weeks post rad and can taste most things ( sweet is less) but cannot handle even 1% spicy. Anything spicy really burns my tongue. Flouride stings too. How long will flouride sting and how long for spicy food. I know everyone will be differnt but just looking for some examples so i know what to expect. Thanks, Sam
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Esophagus problems
I just had my 10th treatment of 2 GY and am having a big problem with my esophagus swallowing food. They gave me a med for taking just before eating and this helps a little. Not enough. I have had Gerd for 40 years and worry that this treatment will cause cancer or Barretts in my esophagus. I have no sores or breaks in my…
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Davinci surgery Thursday
My husband goes in to have the primary cancer, which was found on the right side of the base of his tongue removed using the Davinci robot on Thursday and to get the feeding tube placed. We have been anxiously awaiting getting started, now I have to admit it is all getting so real. I guess it is time to saddle up and be…
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jaw replacement: bone alternatives
Hi There, My father was diagnoised with oral cancer 4 1/2 yrs ago and he underwent lower jaw replacement surgery (where a bone from the leg was removed and fitted in lower jaw) followed by radiation theraphy. All his teeth were removed. He then had a few plastic surgeries in an attempt to get dentures. That failed, and it…
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My Voice Saga
Visited my voice therapist yesterday, and she got my voice prosthesis working again. For those that do not know: I've had my voice box removed and had a tracheal-esophogeal puncture (TEP) at the time. A one-way valve is fitted so when I cover my stoma (hole in the neck) air is forced into the esophagus, which vibrates to…
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I'm praying NED come November ?
First and foremost thanks for all the prayers ! I am soooo relieved I switched clinics and now have an onc, that knows and works with my dx. He won't say for positive until my next PET in November but is leaning towards no evidence of disease. My dx will return eventually, (no clear margins, and perineural invasion) and he…
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Pain medications can be a pain. An update
I apologize for the delay in my updates but it’s been rough It all started with last week’s infection had doubled my throat pain. so I increased my pain medication, when the pain subsided i simply quit taking my oxy, which threw me into almost a weeks worth of withdrawal symptoms i didn’t realize that stopping my…
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Swallowing
I finished my last radiology treatment April 12th (squanamous cell base of tongue, surgery removing cancerous lesion, both tonsils, and 4 lymph nodes,then 35 rad and 7 chemo). Since then I've gone thru 2 sessions (15 treatments each) of Vital Stem Therapy and still having trouble swallowing anything with any texture other…
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Long time no write! Have a question about a problem...
Hey gang! BFD here and while I haven't posted in a few months, I guess that's kind of a good thing. My "success story" continues. In remission and NED for 20 months now, approaching the 2-year mark, and that's good. Fibrosis down around 90%, L'Hermittes gone, range of motion back to normal thanks to my great chiropractor.…
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Lymphedema
My mom was recently diagnosed with lymphedema. She's currently doing neck therapy which seems to be helping with some of the symptoms. Has anyone else experienced lymphedema after treatment?
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9-11
Please take a moment today and say a prayer for all of those who lost their lives on this day...blessing to them,their families and loved ones left behind to deal with the devistating loss.
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CT SCAN DONE
hey everybody i had my ct scan done on Thursday and they said that there is some residual scar tissue left and they are thinking that's all it is but will not know till i get pet scan done which will be Oct 24 i guess this is normally the case when your getting radiation i just wasn't sure if i need to be worried or not…
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We are off to the Paralympics woo hoo
Just thought I'd post a feel good. We're off to Europe on Friday and making our way to London to watch our son race at the Paralympics. His name is brad scott (representing Australia ). He's racing in the. T37 800 and 1500m. I know how patriotic all you Americans are but give a little cheer for him. He won silver in…
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Second opinion Tomorrow afternoon
Hi group, Well will be heading to Mpls., late morning. My appt, isn't til 2 at the Masonic. And I still feel pretty much like doo-doo. Was given meds for it...but yeah not working. They didn't do alot of testing on me at my primary (local) dr., but the ones they did came back all good. Were thinking I'd be poked and…
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False positive on PT scan????
I had SCC in 2006 (left side of neck-tonsil)and again in January of this year(right side of neck-base of tongue)....went through chemo and radiation and finished 4 months ago.....now i have developed a hard lump on left side that has been there for a month....had a PT scan and now they say I have a hot spot on scan and…
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17 Rads Down...13 to go
Hello all, I am sorry I have been away for awhile but I had some complications and lumps were found near my belly button and up near my left breast. I have to go into the hospital again tomorrow for a bit of a stay and more test. I have been struggling with the radiation. I am in more pain than i ever thought. I am not…
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treatable and cureable
One year ago the doctors told my wife and I that my cancer was not cureable but treatable. Theysaid my cancer was too far advanced and had spread to other parts of my body--Lungs to neck and tounge.It was stage 4 and crossed center line to both nodes. Treament was 8 chemo and 36 rads on lungs and 36 rads to neck. I was 76…
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New Kid on the Block with Squamous T1 & more questions than answers....
I'm a newly diagnosed Squamous Cell, base of the tongue, T1 with uptake in the lymph nodes of one side. I've just had my first round of meetings with doc's (surgeon, Oncologist, Radio) and am really not sure what to do. I've been accepted as a patient at MD Anderson in Houston so I will be traveling down there next week to…
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Wishing he didn't hurt so much
I haven't kissed my husband passionately since he had the first surgery to remove what we were told would be a bronchial cleft cyst on July 26. I really miss his physicality in our relationship. I forgot today and hugged him and was going to give him a peck on the cheek and then he stiffened up and grimaced in pain. I…
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Still not healing and completed treatment in December.
My husband completed his treatment for HPV+ tonsil concer w/spread to lymph nodes December 14th 2011. Treatment plan included removal of both tonsils, 7 weeks of radiation and 2 chemo sessions. He had a clean pet scan in April and was feeling pretty good. At the end of April his voice changed and throat was hurting. They…
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To all my friends, NED again !!!!!
Hi Everyone Just wanted all of my CSN friends to know that I am now 2.5 years out and am NED once again on my recent PET scan. I am happy as H*LL. We all have that shoe waiting to drop feeling, don't we? This was probably the best NED, since the first one, as I was beginning to wonder about a recurrence,(that other shoe.)…
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The end of treatment is just around the corner
Hello everyone! I decided to post a little update about my dad's treatment. To summarize again: He is SCC Base of tongue, stage 4. His treatment plan was 35 rads and 7 weekly Cisplatin chemo. Well, treatment is coming to the end, only 5 more rads and 1 chemo!!! Oh, I'm soooooooo glad that soon it will be over. He is having…
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Just researching...Cancer in the lining of the cheeks?
Just curious if you can actually get cancer in the cheeks of your mouth and what it looks like? What are the direct symptons and signs?
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Grouper - From Tampa Bay
Oooops, sorry the just caught grouper didn't make the photo... Grouper Nuggets But the nuggets did.... Here's to my fishing buds....Greg, Hondo, Matt, Pat, Dan, Tuff, AllMost60, Katie, VickieSam, Sea6, BoardwalkGirl....and many more... Oh, and Ditto John
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Long-term radiation damage for throat cancer
Hi everyone, this is a follow up to my first threaed "Squamous Cell Carcinoma - brother in law who is mentally handicapped diagnosed." I haven't posted much since joining because thing shave been a whirl wind of activity. We found out that Bobbie's cancer has spread further down his throat to right above his lungs. They…
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Pain management question
So as some know my husband is diagnosed with Stage IV base of the tongue cancer. He is going in on September 13 to have surgery using the davinci robot. He hates taking pain meds so my question is what pain management strategies have you used. He will start chemo/radiation in 4-6 weeks and may have a neck dissection if…
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Help needed
My husband was diagnosed with esophageal cancer at the cervical of his espohagus. This was after being treated for laryngeal cancer(laryngectomy and throat reconstruction 3/2011). He was told that due to the location of the tumor that surgery would be very hard due to his previous radiation and surgery. He has since…
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First meeting for me in support group !
Hello everyone ! It won't be til Oct. 1st...but living in a small rural community they have one 3x's a year. I asked if there was anything I could bring...we women around here like baking or at least always think we need to bring something to contribute. The little gal said yes, good information and good topics. This is…