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General Board
3 hours ago
Jump to new posts Book [by tlc356]
Anybody who has been hit with Oral cancer who likes to read will probably find this book about President Grover Cleveland as interesting as I did.

“The President Is a Sick Man,” by Matthew Algeo
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Eating, Speech, Swallowing, and Alternative Feeding
11 hours ago
haha! he is eating pie and anything high calorie (and non healthy, he refuses to eat anything healthy as it won't have enough calories) so they will take that feeding tube out! His life has gone back to normal for the most part. He is eating everything, nothing tastes bad at all. His energy is coming back though he likes to make excuses at times that he isn't capable of things but that's more of a mind set...who wants to snow blow snow several times a week though i had to do it with a shovel many times! I will say nothing about his personality or behavior has changed from before cancer but I sure have changed. I am a much stronger person.

I'm not sure if he is going to do any follow up tests. He sees a speech pathologist weekly for neck exercises and something to get rid of lipodema in his face. I told him to stay away from tobacco and alcohol or he is writing his own death sentence. I was being dramatic but so far it has worked.

thanks for asking. I am a strong determined person and knew I would survive with a lot of frustration through the process. Glad to be past it and to move on in life!
8 264 Read More
Introduce yourself
17 hours ago
Thanks so much for all the responses I have gotten. It really helps to connect with people who have been through this.
12 99 Read More
Introduce yourself
02-15-2019 02:47 PM
I'm a caregiver to someone who had back of the tongue cancer this past year. One. Day. At. A. Time. is the best advice I can give you. Best wishes and do seek support from people who care.
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Introduce yourself
02-14-2019 06:07 PM
I know nothing of the scapula flap. However, my hubby had the fibular free flap over 8 years ago. He still walks with a slight limp and has some balance issues on wet or icy surfaces. He walks two miles each way to work daily, but it takes him at least 45 minutes. I doubt that even if he could ski before he would be able to do so now. It stinks that you're going through this. Best wishes
5 372 Read More
Introduce yourself
02-13-2019 05:59 PM

Good luck with Proton Therapy! I had Protons in 2014 for another recurrence, and believe it, along with my other treatments, finally cured my cancer! I hope the same for you!
5 556 Read More
After Treatment Issues - immediate post treatment
02-13-2019 12:51 AM
the latest self treatment. eating whole pies! oh my. anything to gain weight so the feeding tube will be removed. he must not use the feeding tube for 2 weeks for it to be removed. the amount of trash taken out weekly now blows my mind. my adult daughter and I could have gone weeks without taking out trash while he was sick because we eat whole foods...little waste! frozen meals, pie pans, etc. lol. It is an issue as we got 20 inches plus 7 more inches of snow in the last week or so and I don't know if I can get the trash can to the road for trash pick up!

I don't agree with this form of nutrition (or lack thereof) but you all know my opinion matters not so I"m just watching the show.
5 211 Read More
Introduce yourself
02-10-2019 10:14 PM
Welcome to the forum.

At this point, the white patch could be anything. Only a biopsy will be able to tell you if it is cancerous or not. Did you dentist notice the patch? One of OCF’s endeavour is to promote regularly screening for oral cancer by hygienists. If I were you, I would certainly go back to the dentist and discuss the concerns and then take it from there.
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General Board
02-09-2019 03:22 AM
Please join in to hear this FREE webinar on HPV and Oropharyngeal cancer next week.

The Oral Cancer Foundation is proud to partner with the Public Health Foundation to promote an upcoming CDC Webinar on oropharyngeal cancer. We urge all of those who support and follow OCF to please take time to register for and listen in on this important webinar. As many of you know, OCF has been active in funding of oral and oropharyngeal cancer research for almost 20 years. Much of that published research has involved the impact of the human papilloma virus on oropharyngeal cancer. Two of the researchers co-funded by OCF at Johns Hopkins will be the main presenters in this webinar. This presentation overviews what the many years of work in HPV and oropharyngeal cancer has revealed to date. The Webinar will take place on Wednesday, February 13, 2019, 2:00 PM – 3:00 PM EST.

For more info and to register for the webinar click on the following link...

OCF/CDC webinar 2-3pm Wed Feb 13, 2019

Thank you very much!!!

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Symptoms and Diagnosis
02-07-2019 08:07 PM
Thanks Christine. I’ll keep my ENT appointment and see what he says. I’m relieved there’s no large tumour or anything but surprised the lymph nodes all showed as normal given the size of the ones on my right side of my neck. I don’t understand that.

I’m a bit sick of waiting. I just want to know what’s going on and how to fix it. It’s been 6 months now and it’s not getting any better, just worse.
12 590 Read More
Introduce yourself
02-03-2019 10:32 AM
Welcome to OCF, Connie! Im very sorry to hear about what your daughter has been thru! You've found a great resource to learn about oral cancer (OC). We can help you to better help your daughter with info and support. Being a caregiver is NOT an easy task! Try to make some time just for you even if its just a walk around the block or going out to lunch with some friends.

If your daughter has not already been back to see her doctors about the recent changes I suggest taking her in to get checked out right away. The recovery phase can be a long, frustrating time for OC patients with ups and downs and a few set backs as well. Unfortunately, many patients will have set backs that pop up out of the blue. After everything they have already been thru this can be overwhelming. Having your daughters doc give her a good exam will rule out anything serious behind the recent drastic changes. As with anything affecting swallowing or breathing, pay close attention to if your daughter seems to be having any difficulty with her breathing. That would need immediate medical attention with a trip to the ER. All doctors are always on call or they have someone handling calls 24/7. You know your daughter best, if your daughters condition needs immediate attention, call her doctors. Its always better to err on the side of caution and get checked if for nothing else to ease your mind your daughter is ok. Hopefully its nothing serious! Maybe shes having an allergic reaction or picked up a cold or other upper respiratory infection? The swelling could be why your daughter is in pain again as something inflamed could be pressing on nearby nerves.

One very important thing to remember is a complete recovery takes up to 2 years after finishing rads. Her intake (for at least a year post rads) needs to be higher to help the patient to rebuild their body. I was very glad to see your daughter currently has a feeding tube in place! Every single day your daughter should be taking in at least 2500 calories and 48-64 oz of water (formula counts as water). I know it sounds like its alot but OC patients burn calories at a much higher rate than an average person plus her body is working overtime trying to rebuild itself.

I suggest you read and learn more about OC and recovery thru posts here and also on the main OCF site. You are no longer alone with this, we will do our best to help you get your daughter thru her recovery phase. Hang in there!!!! Best wishes with everything and please let us know how your daughter makes out with her recent setback.

PS... I just saw and moved your third post.... Did your daughter have an ENT or radiation oncologist? What doctor has been overseeing your daughters care? Those would be my suggestions as the best docs to check your daughter. Surgeons operate and since your daughters surgery was quite a while ago (plus it was prior to rads) which is why an ENT may be the best doc to check her out. With these recent changes starting 9 days ago your daughter should get seen as soon as possible to rule out any serious medical issues.

3 297 Read More
Symptoms and Diagnosis
01-28-2019 05:59 PM
Kalle, welcome to OCF!!

If your "red mark" tested positive for HPV, that does NOT mean it is cancerous. With approximately 200 strains of HPV, you would first need to have the "right" type of HPV. Its usually #16, 18 and 10 that are the ones that might turn into something serious down the road. Having one of the "bad" strains of HPV does NOT mean you would ever contract cancer from HPV. In fact most adults will have one form or another of HPV at some point in their lives but the HPV clears their body without ever causing any serious medical issues. Some will carry HPV around for more than a decade with the HPV laying dormant until it goes away on its own. HPV usually has such minimal side effects most who have it have never noticed any symptoms. The chances of an adult who has HPV has it go on to turn into oropharyngeal cancer is very slim, less than 10%. I suggest you read more about HPV by clicking on any of the HPVs on any post.

As far as your "red mark" concerns go... a biopsy will tell you what your "red mark" is. I do not know how medical systems work outside of the US (very limited knowledge about Canada also) but I cant imagine getting a biopsy would be a bad thing. This is especially true as you have noticed something isnt right quite a long time ago. The sooner you take the steps to get a diagnosis, the sooner you can begin to fix whatever is wrong.

Best wishes!
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Introduce yourself
01-27-2019 10:43 PM
Welcome to OCF! Im very sorry to read about what you are currently going thru. Mouth pain can be intense! Day by day you will begin to feel better as you heal. Hopefully your biopsy results will bring good news that this is not cancerous. Only thru the biopsy can any medical professional determine if your "sore" is cancer or not.

Best wishes!
1 371 Read More
Introduce yourself
01-24-2019 10:11 PM
I feel you. I went through a similar journey. The drooling can last a couple of weeks maybe more ...depends really on your healing process. The pain for me did not end so soon, as I had to get more surgery after my ENT got out of his league. Be careful with pain meds during this crucial are going to get severely constipated using pain meds...and with not eating properly, especially boost and ensures, that contain a lot of protein, you will get clogged quick. I was not informed about this when I went though it, and ended up hospitalized. If you do take the heavier pain meds make sure to use your stool softeners, and flush with plenty of water or liquids other than the protein packed ones. Also if you are in severe pain, do not be can continue to tell the docs that you are not feeling any relief. They will switch to something careful, as some docs are to ready to give over the big stuff like, Fentanyl. Super addictive and not something you want to get hooked on, I had to be weened off it for about a week in the hospital. The saliva ----I bought BabySmile S-502 Nasal Aspirator, to help with the excess saliva as mine lasted a while. I used talking apps on my phone, and wrote on notepads. It's going to get better. Patience---I know it is hard. If not eating becomes a problem, you may want to consider a feeding tube. I didnt get one until much later, and I wish I didnt wait...I lost over a hundred pounds. The feeding tube took the trauma of eating out of the picture.
1 461 Read More
Eating, Speech, Swallowing, and Alternative Feeding
01-24-2019 09:56 PM
Hi all, though I would leave a link to what got my through the excess saliva stage. I had so much it drove me insane. BabySmile S-502 Nasal Aspirator ---google it. It's a machine basically for well babies to clear the nasal cavity, but you know what else it can do....yep, suck up that excess saliva. Easy to clean and simple to use. You will not regret this purchase.
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After Treatment Issues - immediate post treatment
01-24-2019 09:47 PM
I had the feeding tube and the trach for a short period of time. The feeding tube was uncomfortable getting removed and put back in, but it was a godsend not having to swallow bland food or ensure, etc. I wish I had one before i basically starved myself with drinking ensure and boost. As for the trach. Looks disturbing. Not as bad as you think....After I learned how to cough out all that gunk in my lungs and throat by taking the cap off, It really was a breeze. It made breathing so easy. Although was not pleasant getting removed and itched like crazy afterwards, it also took a while to fully close.
3 687 Read More
After Treatment Issues - immediate post treatment
01-24-2019 09:41 PM
Im only a year out from surgery, but I still experience dry mouth...I use Xylimelts. They work great...also Biotene spray.
1 371 Read More
Introduce yourself
01-24-2019 02:15 PM
Stanvas: The good news is you've survived. Keep surviving and you'll have a good shot at overcoming the difficulties. If your cancer was not caused by HPV, stay away from smoke and drink (or it will come back). Good luck getting through this tough time. Let us know how you progress. Tom
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Insurance and Financial Forum
01-23-2019 01:58 AM
i just organized all the medical bills from this cancer journey. they had stopped sending bills once we hit the deductible but I got a bunch more from december appts. yikes. $9000 for PET scan and a few thousand for another test. I still want to add it all up sometime but not sure if the chemo is included in the $25,000/night hospital stays. $121,000 for radiation treatment. quite the thick files despite not getting bills from September to December once we met deductible.

now we start all over again with that deductible frown
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Introduce yourself
01-22-2019 01:45 PM
Thank you, Christine! It helps to have advice from those who have been there. I am a natural planner and like to plan my future vacation trips and other activities, but with this weight on my shoulders, not knowing what treatment I will have and what kind of timeline I have before me, it is stretching my patience and helping me see that there are so many things outside my control. It helps to have some things that I can control.

I am not exercising currently. I assume that it will only help to start exercising and building muscle. From many things I have read on this site, it seems most people lose weight and it is often muscle weight, which is not healthy. I would love to lose excess fat without the muscle loss, but that's not in my control either.

I have read on some sites that some vitamins and minerals help stop the cancer cells from doing more damage, especially beta carotene and vitamin A. I am trying to eat a diet higher in these foods.

I have read much about losing taste sensations and things tasting like metal. What foods did you find easiest to eat? I'm thinking protein drinks and bland soft foods. Before and after my biopsy, there are areas of my mouth that burn when I eat certain spicy foods and some chocolate.

I am a single woman and live alone with my dog. My mother lives about 4 miles away. Assuming I will have surgery, which is what the oral surgeon that did my biopsy believes, will I need a caregiver full time or could my mom come twice a day to check on me. Will I need to make arrangements to board my dog or have someone care for her? Will I have energy to get up and walk her during my recovery? How many weeks will I be out of work or will I be able to work at home?

There are so many questions running through my mind and I know every person is different and no one knows these answers. But, that is where I am right now in processing my situation.

I have not gotten a second opinion, so that is great advice and looking for a CCC.

Thanks for your support,
2 338 Read More
Introduce yourself
01-19-2019 10:18 PM
I continue to have pain in my tongue 6.5 years post surgery, and still require lots of fluid to eat. It's not severe, and I have just resigned myself to it being the new normal.
9 648 Read More
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