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After Treatment Issues - immediate post treatment
Yesterday at 02:42 PM
Thanks for your response, Connie. The pain had subsided a month or two after treatment, but now has ramped up in intensity to a level of 7 out of 10. It isn't all the time, just when he gets up after a nap. He paces and does neck stretches for about 10 minutes to work through it. The docs don't seem to have an idea about the root cause, which in addition to pain that isn't under control, is an additional source of frustration.
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Introduce yourself
03-18-2019 03:22 PM
Hello! Girl I'd say everyone on this page, once we're on this side of treatment, fears the R word above all so I understand!! We lived all through the C and forevermore fear recurrence.

Hopefully you just have some leukoplakia and nothing major. It's good your getting it looked at NOW rather than LATER. You sure don't want it to be something major and it grew larger out of fear of just seeing what it is!!

Good luck!!!
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After Treatment Issues - immediate post treatment
03-17-2019 05:49 PM
I'm wondering why the pain so much now. My husband ended his rad and chemo for stage 4 beginning of October. I will say it wasn't a picnic for him but now 6 months out, he's had some pain where a tooth was extracted but not really complained of anything else. I always like to look for the root cause or origin of symptoms and wonder what would be causing his pain at this point. Hoping some of the seasoned members have some thoughts for you. I will say mine barely took pain meds during or after treatment. The feeding tube was the most painful thing for him. I suppose everyone is different explains a lot.
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After Treatment Issues - immediate post treatment
03-15-2019 10:46 PM
My husband was diagnosed with stage 4 oral cancer at the end of September. He is a little over 2.5 months out from treatment (radiation and chemo). He didn't have surgery. His pain had started to decrease slowly, but over the past couple weeks, it has increased to where it is debilitating at times. This week he increased his oxy to around the clock (was only taking it at night before) and his doctor increased the Fentanyl patch from 75 to 100 mcg and added nortriptyline. He still gets very intense pain despite the increase in pain meds. In addition to the pain where radiation hit in his jaw and mouth, he now has pain around his right temple. So far, none of the docs has a good explanation for that or a strategy that has relieved pain.

We would be interested in hearing about pain relief that has worked for you - either non-narcotic medication or things that don't involve meds.

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Introduce yourself
03-14-2019 02:19 PM
I am new to this forum so not sure if I’m posting correctly. I had stage one tongue cancer removed June 2017. Since healing I’ve had a sore area under tongue on floor of mout. Surgeon said caused by scar tissue. I live in Florida in winter and my oral surgeon here said there are white spots and wants to biopsy. I’m dreading doing that as I almost don’t want to know. The thought of more surgery makes me want to live in the dark. There is no lump or open sore. It is in the area where the cord from floor of mouth attaches to tongue. Concerned and confused
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Long-Term physical and QOL Issues related to treatment
03-14-2019 01:50 PM
oh my Kristen! Take care of yourself! I have prayed for you and your body.
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Introduce yourself
03-14-2019 02:13 AM
Thanks so much for the response tom and I will ask about a CCC near me when I meet with the Cancer Survivor people tomorrow.
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Long-Term physical and QOL Issues related to treatment
03-13-2019 09:54 PM

I’m sorry for your troubles, and wish you a speedy recovery!

You just made me think about the osteoporosis I have. For some reason, probably from hip pain, about two years ago, I was tested by Dexa Scan, which showed osteoporosis. I can’t take the medication that may help due to jaw fracture from radiation, Osteoradionecrosis, and basically forgot about it, except for the daily pain. It could be from medications or other definiency, but I didn’t see anyone else except my current doctors. Tylenol for arthritis does help got a short time.

I also suffer from low blood pressure. Actually, orthrostatic hypotension (postural hypotension) where my blood pressure drops upon sitting g and even more upon standing to the point of feeling light headed. I usually felt it coming on, and able to sit or fall into the chair or bed, but recently, I just passed out! This happened last October, and was hospitalized due to injuring my leg, but luckily, i didn’t fracture anything. A few weeks ago, after exiting a taxi, I had to hold onto the telephone pole for dear life, so I didn’t fall, until the incident passed. A week later I did faint in the house, got knocked out, after falling and hitting my face on a laundry bag, and then the back of my head on the wall and floor. I was lucky again, and held overnight for observation. The thing is when I fall I can’t get off from the floor, and have to pull myself to a phone, and unlock the door for EMS.

They have support stockings that may help, but the neuropathy in the legs were bothered too much. Getting up slowly, with your head downwards arching up, and stadiny In place for a minute. That’s my situation, but everyone can be different, and best to have your doctors tell you.

Good luck with everything!
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Introduce yourself
03-13-2019 06:10 PM
Jim: Here is what I've posted before. If you have not been going to a CCC, I can tell you that it is very important. Tom

Based on my experience having had two operations for oral cancer since 2003, I would like to suggest four thoughts for newcomers.

1) Since oral cancer hits less than 1% of the population, get professional care from a center (CCC) that specializes in cancer and has oral cancer specialists on staff.

2) Don’t hesitate to travel extra hours to such a center-your disease can be life threatening. If distance worries you, see 3 below.

3) Follow-on care may be done at a location which the CCC works with and is nearer to you.

4) Don’t wait to get help, and don’t second guess expert opinion, but if concerned do get a second professional opinion.
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Introduce yourself
03-13-2019 04:34 PM
Hi, I am Jim and I went to the dentist to see about dentures and found i had cancer on the floor of my mouth and in my jaw. I have been told by the doctor that he got it all, replacing the floor of my mouth and my jaw with a pectoral minor chest muscle after the leg, bone nerve surgery failed. Any advice on how to proceed next? I can still taste well and don't want to lose that. Chemo or radiation? I have an appointment next week with the specialists.

Thanks Jim
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Long-Term physical and QOL Issues related to treatment
03-13-2019 03:15 PM
OH NO!!!!! Im so sorry to read about what you have been thru. I cant imagine how much pain you are in. Many OC patients/survivors have a condition that has wildly fluctuating blood pressure. Heres just a few of the threads that may contain relevant info. Im sure you can find many other threads about low blood pressure by putting the most relevant key words into the search box in the upper right corner of any page.

I forgot to add.... Some medications like many pain meds can lower blood pressure as can being dehydrated or even having a poor diet.

I hope you get well very soon!!!!

Low Blood Pressure thread.

Baroreceptor Failure thread

Motor Neuron Disease, ALS thread includes other long term survivor ailments

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Long-Term physical and QOL Issues related to treatment
03-13-2019 01:20 PM
John’s blood pressure never really recovered after chemo. He suffered from postural hypotension and had to take things slowly. Unfortunately he wasn’t the kind of person who would walk or move slowly. There were a few cares and then he fell and fractured a rib. If low blood pressure is an issue for you, do have a family member learn how best to help a fallen person to get up SAFELY. Just pulling the person off the floor isn’t helpful at all. There are a number of YouTube videos for training caregivers. Have a look at those. I’m sorry you’re back in the hospital, I hope you’ll feel better soon.
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Long-Term physical and QOL Issues related to treatment
03-13-2019 10:21 AM
Well. Guess where I am.

I fell Sunday night and broke my hip. Spent all night and most of Monday in the ER, awaiting a room and surgery ... finally got a room Monday night and surgery Tuesday morning.

Wasn't sure what forum to post this, but I do think it fits under long-term quality of life. All the treatments, stress, etc. have taken a toll on my body, leaving me more susceptible to other things, And then I had a bad reaction to the Cipro antibiotic (the muscle and tendon pain issue), which led me to being sore and loose--jointed, which probably contributed to the ease of hurting myself. (Though mostly it's because I'm a klutz who was wearing slippery socks on a wood floor, sigh.)

On the plus side, I'm a LOT better at navigating hospitals and asking for what I need than I used to be. Something to be said for experience! LOL. It's been eye-opening.

Please keep me in your thoughts and prayers, if you have a spare minute, This ouches pretty fierce.

Oh, and anybody else on here deal with low blood pressure? It's becoming a problem for me and was apparently an issue even in surgery, which was a first. They are getting concerned, which has ME worried. I've always run a little low, but not like this. I could Google, but....
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After Treatment Issues - immediate post treatment
03-13-2019 02:27 AM
when a person believes the rules don't apply to them, it's unlikely they will follow them!

he's never bothered to read or learn anything about all this stuff so when I tell him other's experiences, he acts like I am crazy. oh well. some must learn the hard way. He doesn't listen to the doctors either. i guess we will see how this goes with his dental health. I"m not an advocate of fluoride really but I would at least do some investigating and reading about it if i thought it might save my teeth.

I remind him once in awhile how fortunate he is on so many levels and has not had to deal with loss of taste, actually little pain during radiation (more of it afterward though), back to work within a 3 months, etc. He gets frustrated and thinks he should be back to square one but that's because he has no idea what is normal or abnormal.

I hope you get to keep your teeth VirgoMom...dentistry was my career and I just hate to see anyone lose any teeth.
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After Treatment Issues - immediate post treatment
03-12-2019 07:03 PM
Hi Connie! Well here's my confession, I have had my trays since before my radiation and......have only used them once. And I LOVE MY TEETH and don't want to lose them. Honestly, it's mental. I'm still mad about all these changes to my life that I didn't ask for and it's very possible that's where he's at as well. It's a struggle making myself do the neck stretches and massage even though I need to. It's stupid but it's I think a long hard road to acceptance of the cards we've been dealt.

I wish I had the words to help you help him. I don't. It all sucks! Good luck and maybe with him now having pain he will be more motivated to start following dr. orders.
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After Treatment Issues - immediate post treatment
03-12-2019 01:59 AM
so the dentist does not know. nothing in the xray. he said maybe there was a piece of root left in there but there is no sign of it. i've heard dentists say excuses like this when they don't know...I spent 17 yrs (part of it as faculty) at a dental school. so no resolution on that but he said the pain is easing.

next week, he was to do the esphogus stretching thing so he can swallow better.

found out yesterday from a family member that he is telling people that he had no support during this cancer. let's say that family member hit the roof with truths. wow. maybe he needs to find someone to drive him to that stretching since he hasn't had any support during this cancer.
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Symptoms and Diagnosis
03-11-2019 07:05 PM
Hi guys,

i will be at one of the best ent clinics on thursday morning for a check.

What should I ask for? A biopsy of the nodes/spot or a PET?

Just questioning: I have those nodes since 2016 and they are still the same size. Is that a good sign?
3 303 Read More
Introduce yourself
03-11-2019 04:59 PM
Thank you both so much for sharing your timeframe. It really helps hearing from others who went through this so I can frame my own healing progress. My doctor's appointments have been pushed back several times. The only comment I got from the doctor shortly after the surgery is that it looks good which is a little vague.

I did not know there was an option for another reconstructive surgery. I'll remember that if large bulb doesn't improve after some more healing time. Biting my tongues several times hasn't helped.
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After Treatment Issues - immediate post treatment
03-10-2019 05:54 PM
Christine, you are so right. I learned that one the hard way. However, I am now a good example to use for others here, so at least I can be an object lesson. There's that! Somebody might as well gain from it. laugh I suspect it might have happened anyway ... but my mistakes hastened the process. And the pain was unrelated, I still think. But it's another reason I definitely advocate here ... Do What Christine Says! (Hey, we could sell t-shirts with that ... it'd be a great OCF fundraiser, LOL. I'd wear one!)
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After Treatment Issues - immediate post treatment
03-10-2019 03:46 PM
Good luck tomorrow!!! Hopefully your husband has something unrelated to OC or his treatments/recovery. Please let us know how he makes out.

PS... @Kristen... Several members over the years have been told by their dental professional/specialist/ prostheodontist/ dental oncologist to continue using the fluoride trays for life. After having rads for OC, patients/survivors MUST pay close attention to their dental care. This includes brushing and flossing after every meal and snack along with using the dental trays. Im sorry but I just cant remember all the details of the dental trays as patients/survivors are years out from finishing their rads. It just seems like its something that can be cut back on after a few years but only after consulting with your dental professional. If someone is say 3 years post rads, is still using the trays I would think they should continue to do whatever has been working for them. My teeth werent great going into OC and they really took the brunt of rads. At 2 years post rads, my teeth were so loose and crooked I was scared they would just fall out while I was trying to eat or talk. I thought Id get dentures but instead I ended up getting OC again and there went my plan of having a perfect smile with beautiful white little teeth. No complaints!!!! Im still thankful for every single day no matter what daily inconveniences I live with.
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Introduce yourself
03-10-2019 03:32 PM
You're welcome, Steven! smile

You are very observant! Yes, you are correct about the edit button. After a post gets published, the countdown starts. Members have up to 3 hours*** after they've sent their post to make any and as many edits they want. Any changes needed after the 3 hours can only be made by an Admin (either myself or Gloria) or other moderator. There are a great many behind the scenes responsibilities for OCFs Admin so please be patient when asking for edits to posts. Sometimes the change could be taken care of fairly quickly (in under 2 or 3 hours) and during busier times we may not get to the edit for up to 48 hours. The OCF forum is here to help OC patients and caregivers with correct, scientifically based info and support. We often are dealing with some very ill members who need our help which would always take precedence over an edit request. Plus if Gloria or myself are traveling, not able to get online, have personal or family crisis, not well or hospitalized, working on other OCF projects like helping with the studies you see posted on the forum from time to time will delay edit requests as well. Ive been an Admin here for almost 10 years and would guess Ive only had 2 or 3 requests to make edits after the member was past the 3 hour editing grace period.gate the OCF forum.

Im sending you a private message (PM) with a link. When you have a few minutes, please click on the link and review all the info. What Im sending you is something I created years ago to help our newer members learn the ins and outs of our online forum. As a Admin who does not easily pick up computer related things I wrote this so most people can understand it. Basically the link contains the most common issues new members need help with and tips for them to quickly and easily learn to navigate the OCF forum. S When you pull up our forum page, look towards the top right corner where you should see a tiny flashing envelope next to your user name. Click on the flashing envelope and you will be taken to your PM mailbox. These messages do NOT appear publicly, they're private between the member (or multiple members if its a group PM) and the sender. OCF ensures our members privacy by only allowing our members to PM each other.

Hope I didnt overwhelm you with TMI!!!

3 hours***..... The 3 hour window had been the same for years. Towards the end of 2018 OCF did a major upgrade to the forum and is using a different program. Im sorry but I view the forum differently than our members so I wouldnt be able to test if the "new" OCF forum is still going with the 3 hour time limit. Almost everything has remained the same or changed very slightly so Im almost positive the 3 hour amount of time a member is able to go back and make changes stayed the same.
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After Treatment Issues - immediate post treatment
03-10-2019 02:39 PM
thank you for the information Kristen...always a wealth of experience and information you never wanted to have under your belt!

I guess we will find out tomorrow what the deal is. You can guess if he did the fluoride trays! He was the most uncooperative patient ever if you ask me so he did not do the trays. The rules don't apply to him. His dentist lives down the road from us, young guy. He actually brought the trays to our house. At least he went to the dental office i felt the best about.

I find I need to stay informed so I know what to be alarmed about and what to expect. He has made zero effort to learn anything so everything is a BIG deal to him as it has only happened to him. Par for the course.
7 222 Read More
Introduce yourself
03-10-2019 12:00 PM
Thank you Christine for responding. I appreciate the information you provided. Does the edit button disappear after a certain amount of time?

Thank you.
3 199 Read More
Introduce yourself
03-10-2019 03:40 AM
Welcome to OCF, Steven! Im very sorry you have been recently diagnosed! I remember that shock of when I was first told and how naive I was back then. Best thing I can tell you is to read, read, and read some more!!! But choose the source of your research carefully and avoid Dr Google!!! At OCF, we are proud to carry the health on the net badge which not many cancer websites can say. The health on the net shows our site adheres to providing only correct and up to date medical info. By reading both here and on the main OCF site, you are educating yourself about oral cancer so you will have a much better understanding of the disease, treatments, etc and become a strong advocate for yourself. Remember, knowledge is power!!!

As far as Dr Marx, any other physician or treatment facility is concerned, OCF does NOT rate or promote one over another. There are dozens of websites that rate doctors, dentists, lawyers, hospitals or anything else you can think of using their own set of criteria to rate them on. In todays world of litigation, its best to avoid mentioning specific people or even hinting about a personal opinion regarding any medical professionals. OCF always avoids disparaging remarks and prefers to maintain a positive, diverse site where we all learn from each other while bonding over a common enemy, oral cancer (OC). Some things we always tell our members is to seek out the very best medical care you can and go with it, second opinions are very important, and if possible try to get an appointment at a comprehensive cancer centers (CCCs). Its been proven patients treated at a CCC have the best outcomes. CCCs operate using a team based approach where all the specialists work together so everyone is on the same page. Their meetings are called tumor boards and the patient and their caregiver are allowed to attend and ask questions. If possible, try to not let location be what determines your doctor or treatment facility. The CCCs offer very low cost or free patient lodging nearby and supply transportation to their facility and theres even places who fly cancer patients for free or very low cost. Off the top of my head the top CCCs are MD Anderson, Sloan Kettering, Johns Hopkins, and Moffitt (near Tampa, FL).

I noticed you mentioned reading about teeth removal on the forum. Yes, thats probably nothing you need to be concerned about at this time. No matter what your treatment plan is or where you're being treated you will need to go to the dentist to get an exam and a thorough cleaning. Not all dentists are knowledgeable about OC, if yours isnt you will need to find a dentist who is so your teeth are properly examined and prepared for the treatment phase.

Something almost all OC patients experience is temporarily compromised ability to eat and drink. The best thing I can tell you is to start immediately on eating all your favorite foods, desserts too. You do NOT want to go into this having food cravings as its likely to be several weeks, possibly months until OC patients can enjoy all their favorite foods. Dont worry about gaining weight by eating all your favorite foods, most patients will lose weight during treatments even if taking in significantly higher than usual calories.

Hope this info wasnt overwhelming. Theres just sooooo much to learn when you first start out. Im very glad you have found our site as now you have an excellent resource to help you with everything. You're among friends here, we completely understand everything you are dealing with. Feel free to ask questions and its ok to lean on us when you need to. The Understanding OC section in the following link has TONS of info including things newly diagnosed patients should do and know, types of treatments, HPV (not normally found to cause OC where your tumor is located), complications some patients experience, and theres even a financial assistance section with links to organizations that may be helpful. Best wishes with everything!!!

Main OCF site, Understanding Oral Cancer

NCI CCC list, (can view by map too)
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Introduce yourself
03-09-2019 11:44 PM
Hello all. I am not sure if I should be reading anything in this forum and elsewhere on the internet! It is all very scary. I discovered a growth inside my right cheek recently and a biopsy was taken. Yesterday, I received the bad news. The diagnosis was: Right Cheek: Moderately Differentiated Squamous Cell Carcinoma. Most of the biopsy report I do not understand. I did start inputing various technical medical terms into google. This statement really scared me: Definite areas of lymphovascular invasion and perineural invasion are noted. From what I read, that refers to blood supply and something to do with nerves. From what I have read so far, that is not good! I hope I am wrong.

I have not met with a Doctor yet. The Doctor who gave me my biopsy results yesterday gave me a list of good Doctors in the South Florida region. He highly recommended Dr. Robert Marx (University of Miami, Miller School of Medicine). He said this doctor is a leader for this type of cancer. I did a search of his name on this forum and I noticed he even has a protocol named after him! I was lucky enough to get appointment with him on March 26, 2019. If anyone has any advice on what I should ask, etc, or any advice at all. I would appreciate it.

Obviously, I do not know what stage I am in yet. I am very concerned and scared. All of my upper teeth have been removed (unrelated to this). I already have 5 implants in my upper jawbone, with a permanent denture attached. It stays attached all the time except when my Dentist takes the denture out yearly and cleans behind the denture. All my bottom teeth have crowns on them. I have ready many posts that mention removal of teeth. I certainly don't want to loose my bottom teeth! I guess I am getting ahead of myself! Anyways, Thank you for reading my post.

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