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

Thanks so much for all the responses I have gotten. It really helps to connect with people who have been through this.

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

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.

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!!!

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.

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!

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.

Im only a year out from surgery, but I still experience dry mouth...I use Xylimelts. They work great...also Biotene spray.

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

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.