First my name is Jim Dockery - I am located in Michigan. My cousin and best friend was recently diagnosed with Stage 4 oral cancer - specifically base of the tounge that has spread to his lymph nodes. I have read a lot of information on here and am looking for a person that has undergone treatment for this condition.

He has started treatment with Taxotere, Fluorouracil ( 5 fluorouracil,5-FU ) and Erbitux.

He met with his radiation oncologist today and she painted a very bleak picture.

I think that was just her - he knows he has a battle but she seemed to take away his hope.

My request if possible is that someone on this board that would be willing to talk with him would contact me.

Any help anyone could give would be a blessing from God and he needs that right now.

Thank you in advance.

You can have your friend call me directly. As you have read here, base of tongue cancers are usually HPV16 positive, and there is clinical evidence which is peer reviewed that even stage 4 patients have a survival advantage over those that come to the disease for other reasons. Either this doc is behind the curve on knowledge, or she was bracing him for a tough fight. Either way she clearly did a poor job of things.

Please do not post your email address and phone on the forum openly. The email can bee accessed in your profile which "bad people" and search engines do not get into. The phone number posted in the open forums, might end up in the hands of some call list selling you aluminum siding or who knows what. Late afternoons are the best time to call me even on the weekends. I spend some of every weekend and holiday talking to patients, so it is by choice not a burden to help out.

When you contact me include your phone number and email in that contact (sorry there are just too many to keep them in my memory or on scraps of paper), with your friends name etc. so I can put that together with the incoming call. For now I am going to take your number off the post for your protection. My email is in my profile.

Hi Jim,

If you are looking for hope for a loved one with a stage IV oral cancer, you have found the right place. You will find information and support here. And, you will get to know people who have survived and thrived oral cancer, some of them surviving more than one occurrence.

When my ex-husband was diagnosed with stage IVa oral cancer, he was given more than an 80% chance of survival from more than one doctor. Actually, his MO was fully confident that he had an 80% chance for a cure. Until we got all the results, we were thinking it would be 30%. Still, that was about a one in three chance. We felt that being prepared mentally and physically would go a long way in becoming the "one."

His RO was pretty blunt about the side-effects he'd experience. Yes, it is a hellacious treatment to endure. But, it is doable.

It is important to have an RO who can bolster your cousin's will to survive rather than tear it down. It is disturbing that his RO would be so negative. He deserves the best chance at successful treatment and attitude is a big part of it. It is well within your cousin's rights to request a different RO who can be supportive through his treatment. This may be the most important thing your cousin ever does for his health. It needs to be right.

I'm sorry that I can't help you by sharing how treatment went for my ex-husband. My signature pretty much sums up the reason.
Best wishes to you and your cousin. He's lucky to have your support.

Hi Jim, OCF is like a family and we are all there to help you. The RO has just given her opinion (medical term: prognosis) in view of available statistics and with cancer each individual is different. Like Brian said, BOT cancers are usually HPV16 positive and they respond well to the treatment.

All the best to you and your cousin. He can fight this battle and win if he has the will that cannot be shaken by someone's opinion.

BOT with mets to a node = a 70% chance of HPV and that means it's very curable. Also new news about Erbitux NOT recommended for HPV+ SCC. Your Cousin needs another opinion QUICKLY.

I agree with David, either get a second from a CCC (like University of Michigan) or ask your Oncologist if they can look at Cisplatin for the chemo. Many programs like MD Anderson are starting to go with a 6 dose regiment of Cisplatin instead of the 3 mega doses and that may be a better option.

Glad you found us Jim, sorry you had to. Way to be there for your friend by the way!

Eric

Jim

Take a look at the signatures on many of the posts here. Just in this one thread alone you have received clear and convincing proof that getting a Stage IV oral cancer diagnosis is not a death sentence. Both DavidCPA and I even had Stage IV cancer in the same place: base of tongue, yet we are not dead.
I've grown fond of saying that it's essential to realize that as far as meaningful statistics go, it is always either 100% or Zero for individual survival. And this from a guy who still chases statistics despite knowing better.
From my personal experience, Erbitux is not going to help him much. Studies released this week show that the earlier euphoria on Erbitux has not been born out by the facts and data. It simply does not work for a large percentage of patients although they can not yet tell who (they can do a test to determine the 40% of all colon cancer patients for whom Erbitux cannot work due to a common gene). Many MOs are not up to speed on this recent development.
Charm

Thank you for all the replies and infomation and thank you Brian for your offer.

It is difficult as a friend to make recommendations that may contradict his Dr.'s treatment plan. He was originally going to recieve Cistipan but the switched to Erbitux. I will have him find out exactly why.

Thanks again for all the information.

One of the possible reasons for the switch is a current clinical trial (RTOG 1016) that is comparing the two different treatment ideas, and we have over 100 hospitals currently enrolling patients in the trial. OCF and the NCI are both co-funders with the James Cancer Center of this trial. Personally, OCF agreed to be part of this trial to support our long term research Partner Dr. Gillison. Our portion of it is to provide 100 iPads to patients who will fill out a long questionnaire about the experience as part of the study. This has not been done much before, as trials focus on clinical outcomes, and less on the crap we all have to go through, and our quality of life. I saw this as an ideal opportunity for OCF to develop relationships with all the institutions that are art of the trial, and gather a more obtuse kind of information. (Your donations to OCF at work. OCF contributes to more research than any other H&N organization. Having said that, we NEVER fund esoteric cancer studies. There has to be a tangible, immediately applicable, piece of information that can alter things for patients at a trials' end for us to chip in. )

But doctors around the country are trying to fill the trial, and may be pushing people towards a particular arm of it. PM me and I will tell you what I think about this as a non doctor, patient advocate, that has an inside track. I think if you read Charm's post you have already gotten my take on some of this. But until the trial is done in huge numbers, we won't know for sure.

JIM,

I am in Michigan and am currently being treated at U of M. PM me and I'll see if I can do anything to help your pal. Your a good friend.