My brother was diagnosed with tongue cancer in November 2016. He went to Mayo in FL. They removed most of the tumor, stated they were afraid to break his jaw to get to all of it and did radiation. He received clear margins. He went back for a follow up and was told the cancer came back in the same spot. They waited weeks before scheduling the surgery to remove 1/2 the tongue and reconstruction. When he went for the pre-op, they said not only did it spread to the other side of the tongue, but it also spread to other parts of his mouth and starting down his throat. They have said there is nothing else they can do. He is scheduled to undergo chemo but it sounds like this is just to help with pain. I'm desperate to find someone to help him. I'm afraid we are all losing hope.

Welcome to OCF! Im very sorry your brother is going thru this!!! I suggest calling all the major Comprehensive Cancer Centers (CCCs) to get someone to see him ASAP. His case sounds like it is a complicated one where he needs the highest skilled doctors that are found at the CCCs. Time is of the essence, start calling tomorrow (Monday) to get him seen right away. I always say you dont get if you dont ask so dont hesitate to tell the doctors receptionists what your brother needs help with and its urgent.

Best wishes!!!



List of Cancer Centers

Unfortunately the link you posted does not work. Do you have a list? He has treated primarily at Mayo which we thought was supposed to be one of the best.

I found the list of CCCs. My brother has an appointment Tuesday with a local oncologist that will administer the chemo per the orders of the dr down at Mayo. I also found clinical trials on the NCI's website. Do you have any experience with clinical trials? Is this a path that should be taken, and if so, when should that decision be made?

sooo sooo sorry jws80... whilst I have no experience with clinical trials for Oral cancer, I worked with clinical trials professionally.
there are differing stages for Clinical trials; thosein very early phase, and later phases ii or iii. ...those in the higher level phases have been tried previously with signs of success. Those that are in the earliest stages have not yet been tried on larger numbers of people and therefore may not demonstrate efficacy. If there is a clinical trial he is eligible to enroll in, it is valuable to weigh out the potential side effects vs the other conventional treatments such as the chemo. There are likely other members who have experience first hand with OC clinical trials and can possibly shed a better light on them for you than I.

positive energy your way!

My husband was in two clinical trials after his cancer metastasized and he was given six months to a year. The first trial was a phase 1 trial for PDL-1 which has winced been approved and is now on the market. The second was a phase 2 trial for selinexor. The MO explained to me that both are palliative measure (as opposed to curative measures). For the phase 1 trial, he was monitored very closely as the trial aimed to find out if it was safe to be used on humans. Unfortunately, it did not work for him. The second trial was way more harsh on John and he was eventually demitted from it because he kept having all kinds of side effects that he was really miserable. After the second trial, he was given other, older kinds of chemo.

Patients are selected for clinical trials. The sponsor (drug company) has certain criteria that the patient has to meet befor he can be admitted to the trial. There are all kinds of requirements that must be met before the trial can proceed. For example, John had to have two lung biopsies for the first trial. That has its own risks. Other requirements included regular EKG's, blood tests, etc.

You can go to the OCF main site to read about clinical trials. You should request a consultation with the MO and ask whatever questions you may have. Do find out if the trial is a double-blind test. In that case, the patient may not be given the new drug. You want to know all that before committing.

Sorry about the link not working! Thanks for letting me know. Ive updated the link on my original post, so its ok now.

My brother is back home treating with a local cancer doctor who apparently was not happy with the way Mayo handled his case. This doctor seems to want to follow the path of treatment that I have found through my research, which is not what Mayo did. I just hate that I researched all of this too late but I didn't know what to research in the beginning. I truly feel Mayo has made this fight way more difficult which is very upsetting and frustrating. Where my brother is now isn't a CCC hospital which I have explained to my family. I know time is not on our side, and ultimate decisions are made by my brother, but I just hope if this doctor doesn't seem to do what he should that we will have time to get him to a CCC. At this point, I don't have much trust or faith in any doctors. We do not know if he has already used up the allowed radiation. Plan is to do chemo and radiation (if possible). I do not know if the doctor is planning to do surgery after chemo as my parents go to these meetings with my brother. I do not know what other options he has. Mayo said surgery at this point would be too devastating and no quality of life.

Since your brother is in FL, why not try Moffitt? Thats one of the countrys top CCCs they are very experienced in treating OC patients. Im sorry but off the top of my head I cant think of anyone who has been to Mayo but Im sure some have over the years. OCF doesnt rate facilities, but we do talk among members on where they get treated.

Radiation is NOT always a once and done thing. I know of many who have been thru it twice. I even know 4 patients who have been thru it 3 times and survived. This is done on a case by case basis so it does not fit for every single patient.

As far as chemo being done afterwards, that is usually done for for palliative care only. Alone, chemo can shrink the tumor but its doubtful it can completely eliminate it.

As far as surgery goes.... I completely understand how invasive it would be and how it would greatly impact your brothers quality of life. I had a huge surgery (mandibulectomy) to remove half of my bottom jaw where the cancer had invaded my jawbone. This was a 10 hour operation that was very intricate and had to connect teeny tiny blood vessels. I cant imagine how difficult a surgery would be for what you explained your brother would need done. Now that would be a major surgery!

The only ways to completely eliminate OC are surgery and/or radiation w/ or without chemo. Anything else you come across may not be thru all the FDA trials where its readily available and successful in removing your brothers cancer... every teeny tiny cell.

PS... Please add your signature asap so its easier to understand whats going on with your brother and reply to your questions. Thank you!