I also have a 29 year old son He helps me tremendously even though he has his hands full juggling a roughly 70 hour work week, wife, newborn baby who doesnt sleep but sure can cry all night, house, etc. I struggle to keep up with everything high tech, even devices so you arent alone with your child being better at those things. Sometimes I surprise myself and figure things out like how to best use my TIVO, but I find it impossible to figure out all the settings on my new 4k TV or even worse to navigate thru all the social media options (thats another long story!!!).

The list of CCCs is the first link I added to the end of my previous post titled NCI list of CCCs. When I checked the first link early this morning I was disappointed to see it wasnt working. I just used it last night when I checked it after adding it to my post. Ive tried numerous times to pull up the CCC list but Im not able to even get onto their website. Being high tech challenged, I do not know what happened that these important pages are suddenly not working. Hopefully this is fixed very soon. I would greatly appreciate if any of our members could help out with this!!! If anyone has a recent CCC list, please copy/paste it and pass it along to me thru a private message (PM). As far as the other links go, they both work. The second link is US News Best Hospitals list. The third link is to our main OCF site, specifically the financial help section. If you would like to read more about OC use the last link to go to our Understanding Oral Cancer section. The Understanding section is jam packed with info where you can learn anything and everything about being diagnosed, different treatments, HPV, nutrition, risk factors, etc.

Im sorry if I gave the impression your current doctor isnt well qualified, or not a good doctor. That was definitely NOT my intent at all! What I was trying to convey is.... everyone with a serious medical condition needs to go for a 2nd, 3rd or even more opinion until they find the right fit with the best doctor and facility that works for them. Not all doctors are capable of open, honest replies to their patients questions which only leads to a lack of communication and misinterpretations. Im sure with how complex your case is it would be difficult for anyone who does not have a medical background to understand how everything fits together and the importance of all details no matter how minor.

To elaborate on hospitals, CCCs and which ones are best I'll explain things in more detail. First, Im sorry but off the top of my head I do not know if the facility you mentioned is on the list of CCCs or best hospitals. With the cancer.gov website not working, I cant even look if its a CCC. Without having a medical background I am completely unqualified to give an opinion or even a suggestion of any specific doctor or treatment center. There are many websites out there that rate doctors and hospitals using their own rating systems. OCF is not one of them. We are a science based organization that is impartial when it comes to comparing and rating doctors and/or treatment facilities. We even turn away advertising opportunities which would bring in substantial sums to ensure we remain 100% unbiased with our recommendations. We actually prefer to avoid any discussions of specific doctors and/or hospitals as we do not have enough info about any of them to correctly base an educated, unbiased opinion. We also cant allow those kinds of discussions (both good or bad) to be posted on the OCF forum where they're visible for the world to see. In todays world allowing doctors or facilities names to be publicly discussed, regardless if its positive or negative can become grounds for costly legal action. OCF is a very small non-profit organization with a world-wide presence that operates on a shoe-string budget with counting on our many generous volunteers working together for a common cause. Money spent on legal issues could be put to much better use funding oral cancer research. If using an online rating website please be extra careful, Ive seen some medical rating sites that are not impartial. They sometimes include patient survey results and patient and/or caregiver opinions which does NOT prove which organizations are the best. For example, if you ask 100 successfully treated cancer patients what is the best doctor and facility to get treated for XYZ cancer... 95% will say their doctor and hospital is the "absolute best". This is one patients opinion that isnt based on facts, its each patients preference which shouldnt be included on medical rating websites. OCF advises a CCC (especially for complicated cases like yours) is the best treatment facility... this has been scientifically proven! CCC patients have better outcome rates than those treated at smaller regional/local facilities. I know the top CCCs in no particular order are Moffitt, MD Anderson, Sloan Kettering, and Johns Hopkins to name a few. To complicate matters further for patients, trying to figure out the top facilities can get tricky! This is especially true when for-profit cancer hospitals use terms like cancer treatment center in their name or shortly after. The for-profit organizations treating cancer are NOT at all recommended as they "patient shop" and will only take on patients they're confident they can cure. These for-profit facilities will automatically refuse to treat patients who have certain conditions. Ive noticed those facilities will advertise heavily making it appear as if they're the very best place to treat cancer patients but reality is... they are not!!!. Ive even seen these for-profit organizations pop up at the top of search results when trying to find the CCCs. This sort of thing is why the CCC list is so important for patients and caregivers to use as a guide to finding the best medical care they can get.

As far as treatment options go... by itself chemo is used for palliative care. By itself chemo will not eliminate the cancer completely. It may shrink it which gives you more time to find something that works for your situation. The new immunotherapy drugs like Opdivo could be an option if you qualify for it. Theres certain markers in patients the doctors look for to see if that would work for their patients. Unfortunately even with many years of research the only ways to effectively eliminate the OC 100% is radiation with/without chemo an/or surgery. Basically, patients going thru rads are given chemo to make the radiation work better. Im sorry but as a OC patient/survivor I dont have all the in depth info about this but you can learn considerably more on our main OCF site.

Wishing you all the very best!!! Hopefully your son is able to assist you very soon with finding other options.