grad school daughter lives at home. she came to me today to say her dad is milking this sickness which she predicted would happen from day 1. She said he could be doing something besides laying in that bed 24/7. It's good to hear another perspective as I don't know what is real and what isn't and I've elluded to that before.
In my head, I'm giving him until we hear that PET scan diagnosis on Thursday to milk it and be helpless. I do not know what the results will be, it could be good news, it could be bad news. I'm about ready to ask his boss to give him some kind of work project. I agree with daughter that he can't get any better just sleeping most of the time and his only exercise is to walk 10 steps to the bathroom.
Any thoughts, experiences on knowing what is real and what is just feeling sorry for oneself. I truly do not know how to interpret what I see day to day.
Its highly unlikely your husband would be treated with rads again so soon after finishing rads. That is of course, IF he has a cancerous tumor or not. Most OC patients who have a recurrence so quickly after finishing rads would be treated with surgery only. Sometimes patients can only get one round of rads. Its a case by case basis. Doctors develop a treatment plan for recurrences also take into consideration location of tumor, size, stage, length of time since had rads, patients entire medical history (including recent cancer) and what kind of shape the patient currently is in. I agree that this scare might be what it takes for your husband to understand OC really is a potentially deadly disease if not handled properly. Even when doctors, patients and caregivers do every single thing "right" a recurrence can still happen. Im hoping this is NOT a recurrence and your husbands cancer has been completely eliminated.
Im sorry to read about your slow healing from recent surgery. By joining our site and posting Im fairly certain you must be pretty concerned about your "spot". Try your best to stay busy to help keep your mind from worrying too much. If you are concerned about your slow healing and/or the white area I suggest going back to the doc to get it checked. It could be any number of things going on including an infection or maybe its a regrowth? Only by having the area checked by the doc will you find out whats normal and what needs medical attention. Im hoping its nothing serious and all just your body thats in the process of healing. After having so many surgeries over the past 11 years Ive learned a little about how US doctors do things. For 90 days after a surgery patients can go back to the surgeon to get rechecked. Anything past the 90 days post surgery should go to a different doctor like an ENT or possibly its something for your family doc depending on what the issue is. Being only a month post surgery you are well within the time range to go back to the doc who did your surgery to have it checked again.
There isnt too much info about leukoplakia here but from the info on the main OCF site Ive learned many patients with leukoplakia will have it return after its been surgically removed. Im very sorry I dont have more info for you!!! Our site consists of regular people who are oral cancer patients and caregivers, not medical professionals. Even if we had medical backgrounds its not possible to give a diagnosis without knowing your entire medical history or you in front of us to examine and ask you clarifying questions. I wanted to explain in more detail why I recommend you get it checked out by your doc. Id also suggest to ask the doc if adding high protein whey powder to your diet to help boost your protein intake to speed your healing would help. It cant hurt to ask while you're there.
He is somewhat cooperative with these ladies. I told them I would drive the 2 hours every week if he was willing to do what they say. The medical people we have encountered in this journey have been beyond wonderful.
Hi Christine, Thanks for your response. I have completed speech therapy, and I am back to teaching full time. As for the food list, I eat all those already; I was hoping for some 'real' food suggestions. I supplement my protein with a shake (30 grams), but I still miss eating good quality food, not just mush. I have no problems with spicy anymore, I'm just in a slump with cooking at home and finding foods to eat at restaurants. Thanks for the advise
I am approaching three year mark of when I began my treatments, it has been a year and 7 months since my last post. Not much has changed for me, dry mouth is still uncomfortable, wish they would have better solutions and sometimes when you take medication for a cold it gets much worse. I wish someone would invent a fix for dry mouth, I miss the flavor of Colgate toothpaste but I am eating Jalapeños and other hot spicy items again. They dry mouth also does a number on your teeth, brush, floss and well make sure you keep up with your personal dental hygiene. Travel in the plane also takes its toll as I write this while in Switzerland. The one topic I am proud of is sharing my information with others to help them through this as others have helped me. Someone come to me year ago they wanted to start him off with a feeding tube and other drastic measures, I shared my experience and introduce my team, he got through the treatments lost some weight and is a survivor. I will update again after the three year all clear mark.
Welcome to OCF. Im very sorry you are going thru so much recently. Excessive worrying can be debilitating!
Im very sorry but I dont think you are in the right place to get help. Our site is dedicated to helping oral cancer (OC) patients/survivors and caregivers. (The Oral Cancer Foundation... aka OCF) While we do discuss HPV here and have since OCFs inception funded research, our discussions are almost entirely about OC caused by HPV strains 16 and 18... not the strains of 43 and 51 you mentioned. Im sure you have picked up a considerable amount of info after seeing 20 medical professionals about your possible HPV infection. With about 200 strains of HPV at this time, only 9 of the strains have the potential to cause eventually be the cause of cancer. Theres another 6 strains that are suspected but not yet proven to also cause serious health complications including penile, cervical, vulvar, anal and oral cancers, also genital warts. At OCF, most of the info we have on our site is about HPV+ OC.
I do understand just how terrible it can feel to worry constantly about something that is out of your control. Worrying so much along with waiting for appointments and getting your hopes up that every appointment you go to will give you the help you are seeking must be terribly upsetting. I would actually suggest you may want to focus on finding some relief by seeing a therapist and/or anxiety meds. Im sure you must have been thoroughly researching HPV online to have discovered our site. Unfortunately about all I can do is to steer you in the right direction and give you what HPV info I know of. Im pretty sure you wont see this as I do but, you really are so very fortunate to come to OCF without being sick or having OC.
--- HPV is the most common STD with an estimated 80% of adults having it at some point in their lives. --- Patients with HPV usually clear it on their own without any ill effects --- Even if a person has HPV, it does NOT they will ever contract cancer caused by HPV --- 90% of HPV related cancers can be prevented by getting the Guardisil shots --- 99% of patients with HPV+ 16 or 18 will clear the virus without it ever causing OC or other health issues --- The HPV virus can lay dormant for years, even decades without it ever causing any issues --- Ongoing HPV research is uncovering new info all the time
According to the CDC's website... "At this time there is no test to find out a person’s “HPV status.” Also, there is no approved HPV test to find HPV in the mouth or throat. There are HPV tests that can be used to screen for cervical cancer. These tests are only recommended for screening in women aged 30 years and older. HPV tests are not recommended to screen men, adolescents, or women under the age of 30 years. Most people with HPV do not know they are infected and never develop symptoms or health problems from it. Some people find out they have HPV when they get genital warts. Women may find out they have HPV when they get an abnormal Pap test result (during cervical cancer screening). Others may only find out once they’ve developed more serious problems from HPV, such as cancers."
OCFs opinions about HPV and oral cancer from the main OCF site in the Understanding section.... "No currently available adjunctive device, using tissue auto fluorescence, tissue reflectance, or brush cytology, is capable of assisting in the early discovery of these disease states as pre-cancers. There is also no evidence that the current swish test to collect exfoliated cells to test for the presence of HPV16 has any value in this process. This test finds episomal HPV infections, and it is the persisting long-term infections that have cascaded into E6-E7 DNA involvement in the cells that are of concern. In an HPV world, the adjunctive devices on the market today, mostly sold within the dental industry, do not show efficacy in finding early HPV+ oral/oropharyngeal cancers."
With about 200 strains of HPV, only 13 are behind causing cancer. Its been discovered HPV related cancers are most commonly found to be mainly from these strains... 16, 18, 31, 33, 45, 52, and 58. What we mostly see around here is the majority of HPV+ OC are caused by #16 with some but less caused by #18. This is why I say I dont think we can be of help to you as the strains of HPV you mentioned are not what we see as causing HPV+ OC. At OCF, we see some very, very sick patients. Theres also caregivers who are facing unbelievable challenges watching helplessly as their loved ones struggle to even get out of bed some days. Our first obligation is to assist these members who are very ill and desperately need as much support as we can possibly give them. Some of our members who are fighting thru a recurrence or they have been given a terminal diagnosis are our top priority. Ive given you HPV info thats mostly relating to HPV+ OC which is about all we can help you with. Luckily for your situation, your odds of contracting OC from the HPV strains you have been exposed to are extremely low. As I mentioned before you may want to consider getting the Guardisil shots to protect you from the cancer causing HPV strains.
To be completely honest with you, other sites that deal specifically with HPV would be a better fit for you. With the new changes (October 2018) to the Guardisil shots now being given up to age 45, you should consider getting vaccinated which can be done by your family doc. I hope you can find what you are looking for.
Most patients begin to get their sense of taste back 6-8 weeks (often longer) after finishing rads. I also had the salty taste and it was horrible. Even water tasted overly salty to me.
After being part of this community and reading every single post for the last 11 1/2 years, Ive picked up a few things. The better patients do with their intake, the better they fare overall and less side effects bother them. I was one who struggled almost right from the start with not being able to eat very well and losing weight. Since I could stand to drop a few pounds I was not concerned about losing weight and had no idea of the major complications it was a sign of. When losing weight patients are also losing muscle which is next to impossible to rebuild. Do yourself a huge favor and no matter if you are average sized or 100 pounds overweight.... pay close attention to your weight and intake during rads and recovery. Every single day you need a minimum of 2500 calories and 48-64 oz of water.... every single day!!! This needs to be your goal until at the very least you have hit you one year post rads mark. It takes 2 full years for a complete recovery so many patients need the increased calories and water longer. Just please be much more informed than I had been and watch every single thing that goes into your mouth an d count each calorie. It really is that important!!! If you notice you are losing weight taking in 2500 calories every day, up it to 3000 or even 3500 daily calories. For most OC patients, even 4000 daily calories arent too much as their bodies are working overtime burning up calories at an incredible rate trying to fight the cancer and rebuild the damage its caused and the effects from rads. If you find swallowing becomes a challenge, ask your doc about getting extra hydration to help you avoid becoming dehydrated. You need a prescription to get a couple bags of extra fluid but boy does it help to make you feel so much better!!! Drinking water is especially important if getting chemo and you need to flush that poison out of your system. Nurses will usually give extra fluids when getting your chemo dose but still push yourself to drink even more.
Most patients we see start to really struggle towards the last 2 weeks of rads. If you have gotten to 2 weeks left and havent been hit with debilitating side effects you might be one of the lucky few who sail right thru it. Ive noticed those lucky patients are the ones who have done the very best with their daily intake. Just remember rads is cumulative! Patients undergoing rads will feel progressively worse the longer they're doing rads. In fact, rads continues to work even weeks after finishing rad treatments. Dont be surprised if the first 2-3 weeks of recovery you are still feeling bad as it takes a few weeks before most will begin to feel slightly better.
As a mom of 3, you already have your hands full. Pay attention to what you do every day that uses up your energy. Things as simple as sit when you can stand and taking breaks to rest during the day can help make a difference in how well you do.
Take it one day at a time and have small daily goals to help get you thru to the finish line. Hang in there!!!
Im very sorry you are going thru a scare and have come to our site. Hopefully what you have wont be anything serious and it will clear up quickly.
Since our site is made up of regular people from all walks of life, not medical professionals seeing pictures does not help us to determine what you have going on. Only someone who is a medical professional after spending years in medical school, seeing hundreds of clinical patients, reviewed your full medical history and has you (the patient) in front of them to examine and ask questions are certified to make a medical diagnosis. You should see first your family doc and if they cant help an ENT (ear, nose, and throat specialist). You mentioned being young, wouldnt your parents be able to help you get to the doc? Have you discussed this with them? What about if you are in school a nursing clinic there or something in your area for those patients who are un/underinsured? Im concerned if you arent able to afford a doctor visit, you may not be able to get medications needed to help you heal from whatever you have going on. Are there any free clinics?
Any sore, lump, bump, open sore any patient has inside their mouth/throat that does not heal on its own within 2-3 weeks should be checked by a professional. What you have going on could be any number of things besides cancer. With the weather being cold here, theres always all kinds of bugs going around including the flu, colds, etc. There could be free oral cancer screenings going on in your area? Main OCF site, Free oral cancer screenings
Since you are a smoker this makes healing even harder. Theres hundreds of chemicals that are irritants and many scientifically proven cancer causing additives in tobacco that bother your already sore throat. QUIT!!! By quitting you will give your body a chance to heal on its own. You could have already been well but the irritants in tobacco and its smoke could be why your mouth/throat has not gotten better. Plus all that money saved from could help pay for your doctor visit. As a former smoker, I know quitting is not easy but the longer you wait the harder it will become. You do NOT want to go thru oral cancer or many of the other serious medical issues caused by smoking. Being young, you have your entire life ahead of you... PLEASE make the decision to quit smoking and live a long, happy, and healthy life. Most young people never even consider the consequences of smoking... I didnt either but now looking back I wish I had been better informed and made different decisions. Im missing half of my lower jaw, my teeth and can barely eat anything without choking.... please help yourself to avoid this as your future!!! You may want to also look into the Guardisil shot to protect you from HPV which can also cause oral cancer.
Heres a few other pointers.... I also want to clear up one myth you mentioned.....Unfortunately oral cancer does not have any age limits. Ive known plenty of 20 somethings who went thru absolute hell only to pass away many, many years too soon from oral cancer and its complications. Another tip is to avoid googling symptoms as much as possible, it wont help. Put in enough details and even as 100 year old man can appear as being pregnant. LOL! But seriously, Dr Google wont help to diagnose you or anyone else over the internet, you need to see a doctor in person.
How are you doing, ever find out what caused your swollen lymph node/abscess?
Mine turned out to be from a virus which was awful and long-lasting so I took some antibiotics.
I had an MRI, nothing came back odd but my doctor wanted to move forward with the surgical biopsy just to be sure. I was knocked out with anesthesia for a couple of hours. The operation wasn't too bad, much easier than having wisdom teeth removed. Still not sure why they couldn't just fine-needle biopsy it, but it is what it is.
I'll find out what the lump is on Monday! The entire left side of my hard palate is 100% numb as of 15 hours post-op, which has me concerned because my speech is ever so slightly off now.
I never thought the anti depressants worked before treatment and I believe he stopped taking them during treatment. His demeanor is exactly how it was before treatment. In fact, I said this week that he might have been easier to deal with during the chemo and rads than being back to more normal!
He listened to this speech therapist today and I said to both of them, if he will listen to you and do what he is suppposed to, I will gladly drive 2 hours a week for treatment. I'm so beyond over the rebellion. Just want to get this swallow test done and over with before year end when we get to start meeting deductibles again and get this show on the road before it's too late for him to ever eat by mouth again.
I have been dealing with oral problems since early this year. White patches in my throat and over this time sores that come and go in the same places all over my mouth. Getting worse and more often. Just recently(5 weeks) I have developed a nonpainful, unmovable, firm lymph node on the back of my neck. No sickness or infection has been present. It’s under a centimeter by doctors opinion. I have researched and seen several different instances when lymph nodes were cancerous in less than clinical specifications. Dr. wanted to wait a few more weeks before maybe doing an ultrasound. I pushed for it now because this has been going on way too long. I guess my question is do you think ultrasound is the way to go and would it be viable in a less than centimeter node? Anything discerning that would be helpful. From my research it looks like biopsy is the best way to know but I think that maybe impossible to convince them on such a small node. I’m at a loss but in my gut feel like this isn’t good.
Any experiences would be helpful if you’ve had ultrasounds that were beneficial. If not please ignore and have a pleasant day!
It’s been a few years, thankfully, that I had rads, and have forgotten much! You might want to check with your doctors before stopping! The tumor has to go through certain phases before it’s possibly eliminated such as the S phase, G1, G2, etc, not necessarily in that order, but don’t quote me lol. Radiation in fact works less after the 4th week or so, but takes the 7 weeks for it to fully work or 5-6 weeks with excelerated radiation. Longer is not better, after 7 weeks, but for some reason, even if there is a delay in treatment, they have you complete the full amount, 7 weeks. Another factor is not the total weeks, but keeping the treatment package under 100 days for optimal results.
Twice I didn’t complete my radiation treatment as outlined. Once was due to being in the hospital for several days, and then missing several days due to the power outage, which they tacked on a 6th day, and had you finish a week later too.
Wishing you strength and courage as you deal with so much grief in the loss of your father. May your beliefs sustain you, encourage your spirit and see you through this difficult time.
Lisa F, welcome to OCF! Im very sorry to read about everything your husband (and you as his caregiver) has been thru. Im glad your husband has now gotten to a comprehensive cancer center (CCC).
Gloria has given you some great info. Maybe I missed it in your post... Has your husband had a barium swallow test to see if he is capable of swallowing sips of water? Even a couple drops of water going down the wrong pipe can lead to a very serious problem. I was hospitalized for about 10 days a couple years ago for the aspiration pneumonia. While in the hospital I met with a dietitian and SLP plus I did the barium swallow test. I found the taste and temperature of the items I was given to swallow made it difficult for me to get them down. Needless to say, I failed miserably! Sadly, its very common for oral cancer (OC) survivors to have life long swallowing problems after going thru chemo/rads. Iv e had several members here I was close to who were not able to eat or drink anything... not even one b ite or one sip of water. The 2 friends Im thinking of had several recurrences and multiple rounds of rads which made it impossible for them to swallow anything at all as collateral damage.
As far as your husbands weight goes. Definitely ask where your husband is currently being seen for a nutritionist or dietician. During treatments patients need at least 2500 calories daily ands 48-64 oz of water to maintain their weight. If the patients is still losing weight with taking in 2500 calories every day then their intake must get increased to 3000 or 3500. For some patients with high metabolism rates, even taking in 4000 calories a day is not too much. Cancer patients bodies burn up calories at an incredible rate when going thru rads. Then in the recovery phase the patients intake must still be at a much higher than normal level, especially for the first year post rads. Every patient is different and will react to procedures, medications, etc in their own unique way that is slightly different than other patients. It took me about 7 years after finishing chemo/rads in 2007 to begin to gain weight. My case is different as I had OC 3x in 3 years. So another 5 years after finishing my last OC treatment is when all my milkshakes, smoothies and cheesecake began to catch up to me and I gained about 20 pounds. Currently Im 9 years post OC ands I still to this day struggle to maintain my weight. I dont ever want to be back to my original weight but I do like to have a few extra pounds on me in case I get sick as I tend to drop 10-15 pounds in only a few days whenever I get sick. Im thinking since your husband is struggling to keep his weight on he will need a big boost to his usual daily calories. Im not a doctor, nutritionist or medical professional (like all our members, we're just regular people), but after being part of this organization for 12+ years Ive seen and helped thousands of patients who have struggled with their weight. Ask the doc if its ok to add high protein whey powder (to help speed healing) to your husbands diet. Also ask about if upping his calories to 3000 a day for about 2 weeks as a trial to see if you can control his weight loss. Im assuming the hyperbaric oxygen treatments (HBO) were to help your husband to heal. The whey powder will also help with that as well. Every day, I add 3 scoops to my formula in my liquid nutrition bag of Bob's Red Mill Unflavored Whey Powder in a light green 12 oz bag found in my local Wegmans grocery store's health food aisles. Its not easy finding the unflavored kind anymore since it has become so popular to athletic people where you will almost always see it in chocolate or vanilla. Id also ask the doc if any supplements can be added to his diet. I use a liquid multi-vitamin Centrum makes thats found in almost any grocery, drug or department store. The liquid vitamin can go right into the feeding tube, just flush it good afterwards.
Hope these ideas can help your husband.
PS... As a caregiver, dont forget to make some time for you too. Being a caregiver is HARD!!! I know I could never do what the wonderful caregivers here have done for their patients. Carrying the weight of the world on your shoulders and endless worrying can build up and take its toll on you too. Even a walk around the block every night or going out to lunch once a week with a friend can help you to maintain an upbeat, positive attitude even if you're weighed down b y worrying. We're here for you too.
Hello everyone, we have made a quick video explaining how you can help OCF by just clinking a link. For desktop users the link is to the right of this post. By clicking that link and shopping, a portion of your qualifying purchases are donated to OCF.
I crushed the stinking things, dissolved in water and used the peg, (I did check with the pharmacist first) they still upset my stomach and I stopped after 2 days..
Welcome to OCF, Suzi!!! Im sorry I missed your post!!! By now I hope you have found an ENT who specializes in treating oral cancer (OC) patients. If not, please find one to check your mouth and the areas of concern. It could be any number of things going on including as you suspect, some sort of side effect from the medications. Hopefully its not OC!!! If it would be, you already have found the very best place for up to date and correct medical info and support.
As a former smoker who has been thru wayyy too many things from a direct result of my tobacco usage, please try your very best to eliminate all forms of tobacco from your life. Please do your very best to use this scare as a motivator to quit smoking. Its not easy to quit. Once you make up your mind you are ready to quit and find what motivates you then I know you can do it. When I was first diagnosed with OC in 2007, I started cutting back on my smoking until the shock of my cancer diagnosis wore off then I could focus on eliminating smoking and tobacco dependancy. Please try to quit. I know its not easy, if I can do it I know others can too. It really can make a difference in yoru life weather you are diagnosed with cancer or not. I know you will feel so much healthier when you are free from tobacco usage.
Please keep us posted on hiw yoiu make out. Best wishes!!!
Welcome to OCF, Jan! Im so very sorry you're concerned about your mouth. Hopefully what you have going on is nothing serious and its easily fixed. There are so many different things it could be besides cancer!!! Many adults will have an occasional mouth sore once in a while during their lifetime. Most are nothing serious but occasionally someone will have a mouth sore thats been there for over 2 or 3 weeks and it has not resolved itself. At that point its time to get the sore checked by a professional. The best professional to check the spot would be an ENT (ear, nose and throat doc) who specializes in treating oral cancer patients. I suggest seeking out an ENT to check your mouth and take a good look at your mouth sore. Id advise you to still keep your dental appointment but also make an ENT appointment. Unfortunately many dentists arent familiar with oral cancer and do not offer oral cancer screenings to their patients as their focus is only on their patients teeth. Im wishing you all the very best with this. Please keep us posted on how you make out. Good luck!!!
My husband’s dentist noticed a small leukoplakia on the underside of his tongue during a routine dental appointment. She sent him to an oral surgeon for a biopsy; the report (by a lab that does only oral pathology) came back as moderate dysplasia but warned of a possible “skip effect,” meaning that there could be bad cells in areas that weren’t sent for study. Because cancer had not been diagnosed, he scheduled an excisional biopsy of the whole thing with a well-regarded ENT, who removed it a month later.
He was one of the unlucky ones whose dysplasia turned to cancer; the excisional biopsy (which got it all) came back as SCC in situ, with a small bit superficially invasive. He immediately switched his care to an oral cancer specialist at Johns Hopkins, who determined that no further treatment was necessary and followed him closely over the next few years. He’s now 12 years out and is regularly examined with a VELscope as part of his dental care; he has been referred to the oral surgeon a couple of times for what turned out to be routine mouth irritation.
I can’t speak to the differences between laser and scalpel removal, as laser was never discussed.
thank you! I posted somewhere here? that the tumor was great reduced. air way is open again. It was pretty much closed before treatment. Dec 18th is the PET scan and results on Dec 20.
He got the usual lecture about lack of nutrition and probably tired because of lack of minerals and vitamins....now let's see if he feeds himself. They told him that he is capable of doing tube feedings by himself.
