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Introduce yourself
4 hours ago
Thanks for sharing. I am going to have my dental X-ray soon, Osteoradionecrosis is really scary
4 96 Read More
Currently in Treatment
Yesterday at 02:16 PM
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.

Happy Holidays to all !!!

Leonard
106 43,988 Read More
Introduce yourself
Yesterday at 12:04 PM
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.

A few facts about HPV which you can read more about in the Understanding section on the main OCF site... OCF Main Site... Understanding, HPV section

--- 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.

Best wishes!









1 48 Read More
Medications, Treatment, Procedures
12-07-2018 01:45 PM
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!!!
1 56 Read More
Symptoms and Diagnosis
12-07-2018 01:31 PM
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.

Best wishes!!!
1 55 Read More
Long-Term physical and QOL Issues related to treatment
12-06-2018 10:16 AM
Great job!

Thank you very much!!!!
5 189 Read More
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