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My cancer has spread
Hi All, I might not see you for awhile but wanted to thank those who have supported me, listened, and advised. My HPV driven cancer has been cured in my neck but has spread to brain and lung. I was aware that it could happen so no surprise. A new immunotherapy drug for me and radiation plan, though much more gentle. I have…
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Husband had his first Pet Scan?
Hi Everyone, Although his results were good for the tumor which there is only a small remnant with no FDG uptake. We were told about two small growths on the lower right and left poles of his thyroid by the medical oncologist. When I questioned if they did a comparison to his previous scans, I was told no. Finding this to…
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Stupid Insurance!
So, my husband was supposed to have a follow up CT Scan tomorrow. He has only had one since treatment and it was clean (yay!). This was in August 2017 ... I think that was two or three months after treatment ended. Well, the insurance is not going to cover his scan tomorrow. I thought you were supposed to get a scan every…
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Treatments for necrosis
Hi has anyone developed necrosis From radiation treatment? My mum had snuc 5 years ago in her sinus’s and cribiplate bone and has recently developed a hole near the corner of her eye and nose. The dr hs said it needs to grafted in surgery to remove the dead tissue but they are yet to give her a date. The hole is…
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PET scan was good execpt for one thing
Was so hoping I could celebrate with Curlyn, Byebyecancer, OKCnative, and the few others that finished up their treatments about the same time as myself but I had one thing that turned out alarming on the scan. There was a "bright" spot ( SUV of 3.3) showing up on my colon that concerned the radiation doctor and now I have…
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Cisplatin Chemo Question
My husbands treatment plan for BOT HPV+ cancer has been 35 radiation treatments and 3 chemo treatments once every 3 weeks. He has 8 more radiation treatments and is scheduled for his 3rd chemo on 1/16. We’ve heard that some patients opt out of the 3rd treatment. The doctor also mentioned that some people can’t tolerate the…
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Best radiation burn creams?
Hi guys, While hubby is doing ok nutrition wise, he has developed a pretty nasty radiation rash on his neck and upper chest/back. We have been putting on aloe from the yard - any other really good creams or ointments that anyone could suggest? Thanks so much, Jen
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Nausea during radiation! Help!
My mom has had 7 radiation treatments out of 30. She is getting weak day by day and is losing her mental strength. Constant vomiting is just making it worse. Our radio onco says it has nothing to do with radiation. All tests results are negavtive. Did someone else suffer something like this ? Please help!
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Peg tube with pain??
Just a quick note. Did alot of you who had the peg tube inserted get severe pain after the procedure was done? I've heard some people say pain was really bad! My doc said I would only have soreness. I was just curious. Thx!!
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Maintaining Weight
I hope everyone is doing well. I’m 3 months post treatment and am having trouble maintaining weight. Ive had a peg tube since treatment started and hope to get it out in a few weeks. I‘m weening myself from the peg tube and haven’t taken TwoCal HN in over a month. I’m currently at 180lbs and eating at least 2500 calories…
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Voice back after tonsillectomy?
Howdy! So I've had the tonsillectomy and neck dissection. Next is the radiation and possibly chemo (the docs have to discuss chemo at the next tumor board). So, as a 45 year old, does anyone have a ballpark idea of when I might get my full voice back? I have been speaking at a whisper for 2+ weeks now, although for the…
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Correct answer please!
Good morning HN members I have a question that maybe someone can help me with since it's bothering me. I am going to have a peg (feeding tube) placement next week. The resident doctor scared me because he said a long tube will b placed in my nose and will go down esophagus through chest n go down More until it is next to…
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Got my PEG tube out and my colconscopy finally
Good news they only found one small polyp and should be ok. I'm so happy for a change and thanks for all the moral support from everybody on this site. You truely are my brothers and sisters and thanks so much.
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He didn’t get a scan, but...
My husband had a follow up physical exam with a scope, poke and prod (up the nose with an optic hose camera) and everything looks perfect! The doctor said a scan won’t be necessary at this time and he will see us in two months! :) . He is 8 months out of treatment.
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nasopharangeal cancer.
My husband was newly diagnosed with a cancer of the nasopharnyx. The doctors are planning to insert a tube into his abdominal cavity to help him, should he need it, take nourishement during his treatments. Has anyone had this done and are there any side effects from having it done. He shudders at the fact that he will have…
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First Week treatment
WED-Fri was rad and that was a relative calm experience. Chemo minus the port went ok except the numerous trips to the bathroom to urinate. I have taxol, carbo for aobut 3 hours. I did get a little nauseated, stomach wise and constipated. Does chemo get worse or pretty much stay the same?? Today I went to work after rad…
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1st rad treatment
Had my first treatment today.. Took awhile to get going because they had to redo my mask. Too much pressure on my adams apple. Once they fix that and cut the mouth out it was a breeze. My question is I am starting mucus in the back of my throat. Like when you come down with a cold. Is this possible after one treatment?? Or…
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CURED!
I had my 5 year appointments and have been deemed "cured" by my team at Johns Hopkins. I was hoping to be totally discharged but my rad onc wants to keep an eye on me and help me manage the side effects. I still have to have a yearly CT scan and swallow study but there's something about graduating from NED to "cured" that…
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Need advice
Hi everyone. Just a quick note to ask some insight and feedback. I am scheduled for rads next thursday then peg tube placement. Also on friday rads n chemo. Think that's too much at once. Has anyone had appts back to back like that? Kinda hard for ur body to take within 2 days. Please let me know. Thx a bunch!!
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Pet Scan Denied by Insurance
Hi everyone, I'm 45+ male that was recently diagnosed (last Friday) with HPV SCC and this is my first post. My ENT was able to snip a piece of tissue from my tonsil area to confirm the malignacy. My ENT submitted to have a Petscan and a CT done but my insurance (Aetna) denied the Petscan and only approved neck and chest CT…
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Scared...
I was diagnosed with HPV+ BOT cancer about 14 months ago (Jan 2017). I happen to work at the academic medical center where I received treatment. I have had a little bit of a scratchy throat over the last week or so. I have an amazing gag reflex (or lack thereof) and can actually get a finger back there and touch the area…
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Where have I been? (followup post post-treatment)
Hi all, You may remember my previous post where I gave weekly updates during treatment. I had an early response scan during my last week of treatment, which came back showing nothing particularly alarming. Shortly after that post, I had my bell ringing ceremony at ProCure and things got a bit worse before they got better.…
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Ring the Bell
I just wanted to check in to ring the bell. I just completed my 1 year and a half scope to receive the good news that per all indicators I remain NED! I really appreciate is Forum, and I particularly appreciate the posts I read from old timers. It gives me hope to see so many thriving in the life after cancer world. Cancer…
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Excessive saliva
Hey, I have a problem. About 3/4 of the way through my radiation treatment for squamous cell in my throat and tongue, I developed excessive saliva. On April 15th, treatment ended but as of today I still have the excess saliva. Has anybody heard of this before. It's driving me crazy and keeping me from getting my swallow…
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New Kid in Town
Hi there. I'm new to posting here, having just found these discussion boards recently. I was diagnosed HPV-16 last July. No tumor was found but several lymph nodes lit up in first PET, so I did 34 days of Rads and 6 doses of Cisplatin. I finished treatment in late October '17, and have been mending ever since. I know that…
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Back To Work
When did you guys find that you were able to return to work? I am 14 weeks post treatment with a clear PET and CT scan - Yay! My energy is good, but if I have a couple of days of "normal" activity I end up in bed for the day recovering. I am walking 30 minutes a day and doing yoga twice a week but if I do an 8 hour day it…
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Recently Diagnosed
Hi everyone!!! yesterday I was diagnosed with squamous carcinoma... back of the tongue. I had no symptoms except a swollen gland on the side of my neck. this was about 2cm. I only had this for about two weeks.. They said the primary tumor site is most likely at that right tongue base at about 2.5 cm. They said it appears…
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Anyone have Ensure issues?
This is my 2nd try to post so if the other shows up, I will delete one. I had been feeling good but trying to gain some muscle back, so in addition to my 3 qts of milk per week I added 4-5 Ensure (original or high pro) to my diet. I know Ensure has 25%/bottle of daily b12 requirement but I am thinking the synthetic…
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Taking my first chemo dose tomorrow- Cisplatin+Gemcitabine. Worried about few things please comment.
Hi all I hope all of you are doing well. I was recently diagnosed with right tonsil cancer with right side neck level II lymph nodes involved and HPV+. Stage details include T2N2M0; which is Stage II as per the new guidelines on HPV+ oropharyngeal cancers, and Stage IVA as per old standards. My doctor has suggested the…
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Bronchial spasms
Has anyone suffered bronchial spasms after treatment? We did 3 cisplatiin and 40 rads. Went through and ended with bronchial spasms and now need nebulizer. Bf has trach and peg tube we're working to get removed in the next few months and have a machine for misting air and a machine for suctionung and now thus. Hoping it…