Hello everyone

I just wanted to update our experience so far at MD Anderson.

First of all the hospital is the biggest I've ever seen. The doctors and nurses seem to be very intelligent. We have met with a surgeon and a Radiation oncologist and a C T scan was done. We will meet with a Chemo Oncologist tomorrow .

Mom was very upset because the Radiation doctor said there was nothing he could do. It didn't surprise me because I knew she couldn't be Re Radiated .
The surgeon and radiation doctor said this is a very complicated case . I guess because the cancer is on the carotid Artery .

I hope the Chemo oncologist has better news with some type of treatment . The surgeon said he meets with 10 other doctors and they have to agree if a surgery can be done .
So far it's not looking to good

After we see the Chemo doctor we were told we could go home and wait for a call as to what "if any " treatment or surgery plan is made.
But again I don't think it's looking to good .

Thanks
Heidi

Heidi, don't get too far ahead of yourself. I'm glad you are there, getting the best eyes looking at your mother's case.

Thanks Uptown

God knows I'm trying to do the best I can. I just hope we get some encouraging news of some kind with the Chemo Doctor . Moms already getting depressed and I have a long drive home with her . It's just me and mom alone over here in a big city and I am a Country Girl . Defently not used to this .

Thanks
Heidi

There is a treatment available for carotid. I think PaulB had a similar surgery. It's all about finding the right surgeon for the job. I would maybe PM him and see if he can give you the details. hugs... and fingers crossed for your mom.

There is a head and neck surgeon at NYU by the name of Marc DeLacure. I have seen a couple cases he did with tumors that were wrapped around carotids that no one else would touch. Needless to say this is not for the fainthearted. Even with lots of experience,these surgeries are very individual given the situation, and one size does not fit all as they say. But Mark is at the top of his game, I personally have trusted my life to him on the table for a sinus surgery that no one else would touch as there was a high chance that I could be blind at the end of it. ( I'm not) I know you are already at one of the best institutions in the whole world, Randy Webber there who is the head of the department has a stellar rep as a cutter. But not everyone will take on this kind of high risk thing. If after considering all this, and you want me to introduce you to someone else to look at the scans, I would be pleased to do so, no promises about what they will say. But as has been stated, not every surgeon has the skill sets, nor the desire to do this kind of case, and not every case is actually doable. Chemo is likely not going to do much in the long view through it may slow things down. Immunotherapies in head and neck are not even in the clinical trial stage right now; I sit on the National Cancer Institute oversight committee, on H&N immunotherapy, and we are still talking about the appropriate approach to the trials themselves. Options are few, and MDACC knows what those are. I would put a lot of weight on their combined opinions as to what is possible and what direction you should go in. They saved my life the first time when my chances of making it were stated to me to be about 12%�. by MDACC. No chance at all was said by others by others who will go unnamed. I trust those MDACC people in spades.

Thanks Brian

I just read your post to my mother. Just to let her know that we will move on if need be.

Hopefully we will get a plan by Monday here at MDA . After meeting these doctors there is no doubt the doctors here at MDA are very intelligent.

I will keep Dr Marc DeLacure in mind. If it means a chance of survival for my mother then im on board.

Thanks so much Brian
Heidi

Your update is both uplifting and somber. The good news is you are getting advice from the top group of HNC doctors just about anywhere on the planet. It is great you are there as your case is quite complicated, making any suggestion from our end pretty senseless.

Good luck and keep up the hope. It does seem the choices are less of evils. Again, be comforted the team at MDA is tops.

Brian,
Are you aware of these immunotherapy trials going on @NIH for HPV that now include orophrayngeal?

https://clinicaltrials.gov/ct2/show/NCT02280811?term=HPV+immunotherapy&rank=4

https://clinicaltrials.gov/ct2/show/NCT01585428?term=HPV+immunotherapy&rank=5

I'd be interested in your thoughts. I think this is something Hellion should be looking at too... Since the age limit is 66yrs old I'm sorry it is not available for your mom at this point, sweetiepie.

I sit on the oversight committee that approved these trials at NCI. So yes I am familiar with them. More than that I am not supposed to comment on them, their outcomes, issues in getting them in play, bias that might have been discovered after started that was not considered before inception and so much more. I will say that qualifying for them is difficult by design as there are many confounding factors they are trying to control for.

Brian

After a consult with the medical oncologist at MDA yesterday we were told about a clinical trial that may help my mom.

The Oncologist spoke of an infusion of a immune drug and a chemo drug that would be given once every two weeks. Do you know anything about this trial Brian ?

There is more information I need to get such as the name of the drugs they will start with. The Oncologist said its very important not to start with certain chemo drugs first because they want to leave the window open for further treatment. It was mentioned that once certain Chemo drugs were used already than that leaves less options.

We were told we would have to travel to MDA because this is there trial.

The trial is to build the immune system so the body can fight off the cancer. If this doesn't work the oncologist said there were a few other treatments to try.


Thanks
Heidi