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lots of questions :(
Chin and jaw swelling?last treatment was August 28, this past 10 days I suddenly have Chipmunk lower cheeks and a double chin. I'm 41 years old and very thin. I've heard of lymphatic massage But not from my oncology team. how often do you go for follow up appointments? Unfortunately I have a stomach condition -…
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Bloodwork
Hi all! Maybe a question for the senior warriors. I am happy to say I am 5 years out and it seems my bloodwork is a bit strange. I had a full panel from A-Z done, and although I have no pain, it is showing I have rheumatoid arthritis. Also the first screening shows I a positive for Lyme disease, although I live in NYC! I…
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Mouth Opening Shrinkage
Has anyone had their oral opening shrink? It is called microstomia and I have it! My mouth has shrunken to the point that I cannot get my upper denture in without tearing the side of my mouth and that is not fun! I started after sometime during my radiation (30 rads in 6 weeks for tongue cancer). About a month after I had…
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FDA expands approved use of Cyramza to treat aggressive non-small cell lung cancer
Came across this on the FDA.gov website and thought I would pass it along. Approval was expanded on 12/12/2014. http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm426720.htm ~C
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Has anyone had experience with luekaplakia post-treatment?
Just returned from a regular checkup where I showed my oncologist some disturbing white patches underneath my tongue. He said that it is likely to be luekaplakia, and that I should wait and see if it goes away, and, if not, I will need to see the cancer surgeon to get it removed, as it is potentially pre-cancerous. It is…
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Newly Diagnosed Adcc
Hello everyone! Unfortunately I'm new to the forum and can't say I'm glad but here I am;) I felt a tender spot vicinity my submandibular several months ago and had an MRI done to see what was going on. The MRI showed a small 'almond sized' tumor in my left side submandibular. A biopsy was done and the results came back as…
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Something new
Had an appointment at the dermatologist today, wa\nted him to look at a couple of things on my neck. They were nothing, something called keratosis, however I have had a dark spot on my arm for a few years now and he wanted to take a closer look. He used a magnifying glass and a small tool to prick it. He then said that it…
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Hello old friends
Hi guys and gals. Thank you all for your prayers and I want to especially thank my dear friend Hondo. This man has basically kept me alive so many times with his never-ending words of encouragement and prayers when I didn't really feel like I had any reasons left to keep going. God definately has a sense of humor as I now…
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Pet Scan Results
We are so excited !!!! we just talked to the Dr..... Fridays Pet Scan was Clear!!!!!!!!!!thank you God!
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Problems with the Mouth??
I know this is a common topic, but I would like ask about some mouth problems I am having at the 6 mo post treatment (Surgery&Rads). My tongue and insides of my cheeks are so swollen, that I have indentations in my tongue where it lays in my bottom teeth formation. I have several bumps on my cheeks, almost like where my…
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Too many appointments???
Finished tx in August , clean pet scans, no complications, saw my dr on dec 2, now they are calling saying I have a follow up tomorrow??? I asked why, she just said its in the chart, no blood work, nothing new. I read according to american cancer society every 3-4 months is norm, not every 10 days! Do I want to go? No, i…
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Skiffin & ShellBell - Anniversary
My hunny and I on vacation last week up in Boston area... We've been together nearly 24 and married 14..., just love the woman, can't say it any other way... Thoughts and prayers John
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NED
I am so happy to see the reports of NED these past few days. I want to add my hubby’s NED report of his 1-year PET this past week (epiglottis with 2 lymph nodes; 38 rads and 8 cisplatin; no surgery). We had the scanxiety, as he has been having a bit of difficulty swallowing and choking, which were part of his original…
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Hello fellow warriors
Just a quick visit to say HI. Today is 5 years since I was told I had throat cancer, something I wasn't very thankfull for a few days later on Thanksgiving but I didn't have a choice. This coming Thanksgiivng I will be thankfull for still being here and able to watch the Eagles kick the Cowboys azz on my favorite holiday.…
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Shall I do a Happy Dance now ???
Hi there , Just had to write this... I had my pet scan yesterday and was not getting results till next tuesday. Today I had an MRI. I asked my radiation dr after the mi if he could give me an update on my progress through the mri's. He was all smiles and said " You have responded very well to treatment". Took me into his…
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Effects of Radiation Long Term
I'm a nine year survivor of tonsil cancer and have a new problem as a result of radiation treatment. I had a cold back in the spring and had to have a tube placed in my right ear. It was full of fluid and would not re-absorb. The past two weeks I have had a sore throat and once agained noticed my right ear feeling stopped…
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Had my one year [13 months] checkup with my Onc Doctor/surgen
Had my one year [13 months] checkup with my Onc Doctor/surgen. Went very well and don't have to go back for six months now. Started my day and got up to get ready at 7:30 am. Got the car pack and started the 215 mile drive at 9:45am. Had a quick bite on the road and got there by 2:45 for my 3:00pm appointment. Called back…
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Me an' NED at 6
I got the best Thanksgiving present I could hope for with a NED PET result last week. It was almost exactly 6 years ago that the ENT used the C-word for the first time, and it's been a long hard battle for me and my wife ever since. Truly, I would not be alive if it wasn't for her, some amazing doctors and nurses, and so…
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2 year scan check in
i hope all the boys and girls who helped me get through the worst experience of my life are doing well and enjoy this thanksgiving holiday today. Those of you in the midst of your battle keep up the fight. I just wanted to say I went for my 2 year scan last week with much anxiety and the results were good- the letters we…
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Prayers needed
I found out two days ago my Mama cancer is back. She had half of a lung removed along with lymph nodes in 2011. Now she has lmph nodes from the removal area up into her neck, or how ever you say it. She is 76 Years old, and I wish I could be with her again, but I have to worry about me this time. Oh and she has asked for…
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Skiffin 16
I have been gone for a few weeks with pneumonic so I might have missed something’s. I don’t see John posting anything in a good while, anyone hear from him lately. Tim Hondo
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Tonsil Cancer Diagnosis
Hi everyone. I just found out on Monday this week that I have tonsil cancer (left tonsil)...bummer. I went to see an ENT last week (Wed) due to my left tonsil being huge for the past several months. He took a biopsy that day and I found out this week that it is cancer. I had a head and chest CT scan yesterday and my doctor…
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A friend and coworker
just found out that she has Stage IV cancer in her stomach area with spots on her lung and brain. Her doctors are optomistic and want to hit it hard and get treatment going. She is debating it because she has "always heard" that any Stage IV means no hope. I have told her otherwise. She also doesn't want to lose her hair.…
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Salagen (for dry mouth)...
When I saw my ENT last week and complained about the dry-mouth he prescribed 'Salagen' which is used specifically to stimulate saliva secretion in patients that have undergone rads for head and neck cancers among other afflictions. I'm picking it up this week. Has anyone here ever used this medication or knows of someone…
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Need help
Cant figure out where my discussions our going when after I read them. Envelope turns grey and can't get them back.
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Mucositis
Am new here have been treated for tonsil cancer. Am 6 weeks out from radiation having trouble with mucositis and swelling. Is there any possible recovery time for this as having trouble getting nutriction in. Was given meds from ENT but has not subsided. Also have radiation burns on inside of mouth. any idea on the length…
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Very confused by a post written by Gypsy1959
Hi there, Wasnt going to write , but its really getting to me. Am really confused by a recent post called " scared" by Gypsy1959. I am pretty sure I did not say anything wrong and if I did , I am sorry. But I really honestly cannot see it ?? I am sooo confused and actually a little upset. Tried contacting Gypsy1959 but…
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Swallow issues
After nearly 12 yrs of cancer free, finally the side effect has caught up with me. I am having major difficulty eating, have a permanent feeding tube since last year and affecting my speech. Doctors believed due to scar tissues from radiation and neck dissection. Have seen many speech and swallow therapists and nothing…
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To Worry or Not - NOT (PET SCAN CAME BACK CLEAR!!)
Had my PET scan this morning. Had it at the hospital where I hard my laryngectomy in January. Anyway, just like every one else, I want my results NOW. But, of course, the doctor is not working today. The radialogist came to talk to me afterwards - first time that happened - should I worry or not? He asked if I had any…
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My Old friend Pneumonia
Had another fight with a little Pneumonia for the last 3 or 4 weeks, did not know what was going one. I would feel good during day and sick at night, running high fever and then freezing. I had to go out of town on a 3 day job but had to come back home because I was feeling so bad. Caretaker Wife made me go see the family…