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

Get the trial number so we can look at it exactly. Sounds like like something else, not one of the immunotherapy trials mentioned above which are being done at several locations. The information they are giving u is so watered down that I can't tell what they are going to do. But with a trial number u/ we can look it up and see exactly what it entails. There are some chemo only trials out there, but I don't know much about them. Most of these immunotherapy trials in H and N are very early trials where dosing is still being figured out. Don't let that spook u if this is a Hail Mary last choice idea. All the patients in the trials have had previous treatment and they are not available to first time people that have not had chemo or rads already. They both involve taking cells out of the patient and growing them in abnormally high numbers and reintroducing them. In other cancers some of the immunotherapy ideas incorporate gene and proteome sequencing of an individual's tumor and then altering patient immune cells to look specifically for that problem and attack it. Those are really the cutting edge future of cancer treatment but not available in h and n yet.

Thanks Brian

I will get the trial number when we return to Texas hopefully by next week. My mom is ready to go back now. I just hope a treatment can start really soon because my mom is getting weak and is continuing to loose weight. She uses the feed tube but eats very little with it. She is on pain meds around the clock. She has lost about 60lbs since she was diagnosed. I hope she can hang in there for these treatments.

Thanks Brian your help is appreciated very much.
Heidi

Amber, my husband was in a phase 1 immunotherapy trial earlier this year. It was MEDI47361108. At the time, they had just opened it up to head and neck patients. We heard from our MO that of the three had and neck patients she had, one was stable, the other showed some reduction, but it did not work for my husband. The drug seemed to have better outcomes in lung cancer patients.

Heidi, they should be willing to give you the trial number over the phone, don't wait for the appt. Also since your mom is on a peg tube, if someone else will just hook her up and put her in a comfy chair or sitting up in bed on a slow drip, she won't feel full and you can literally be feeding all day. No more weight loss! At her age and condition that nutrition could be a tipping point in her progress, both positive or negative. If the formula they are prescribing is making her feel sick, try Real Foods, Their pre blenderized meals are real food, and nutritionally balanced. Google them or I will send you a link.

Thanks Brian

I am going to make sure the feeding tube is on a slow drip so she can take in more. I have a home health nurse coming to the house everyday and some of my family members are now trying to help. we are going to have to rely on the feeding tube because she just cant eat. She forces herself to eat 3 or 4 spoons of something soft and that's it. we are pushing her to eat more but she keeps saying she has no appetite.

I will call MDA in the morning to find out what Clinical Trial this is. I sent a message last night to the doctor in charge. She really needs to start treatment ASAP.

Thanks Brian
Heidi

No one has any appetite, and that is normal. But this is a must if you want her to be robust enough to deal with all this. Appetite and desire are not parts of the equation.

Heidi,

I just had my lower right side jaw removed on December 30th was almost a 16 hr surgery. The Dr said it was worse then what he thought. The cancer was growning up the carotid artery,from what I understand the team stopped,talked about how. Came up with pilling cancer off with knife. They said the clinical trial I did probably saved my life,cause it kelp shrinking the tumor. I was blacking ok more then I was saying. The morning of surgery I sat on floor every chance I could. If I can help you in any way let me know.. Have a great day!!

I Can't believe the phone call I got from MD Anderson Today. How upsetting.

The Surgeon that my mother seen at MDA called me today and said my mother would be better off staying at home at a local hospital for treatment.

I called the medical oncologist at MDA who told us about a clinical trial my mother could try and I cannot even get a call back.

My mother has not had treatment in 5 weeks due to the transition to MD Anderson and now this Bomb Shell. We didn't need this rite now. Something just isn't rite with this picture.

My mothers previous doctors were supposed to be MD Anderson certified at a local hospital . I cant help but to wonder if this had something to do with this phone call.

Im so upset
Heidi

Wasamason

Thanks for your reply.

On my moms last surgery the surgeon should have tried to scrap to Carotid Artery but instead closed her up. We were told there were to many cancer cells in the cheek area and then on the artery.

I'm trying get my mom treatment at a comprehensive cancer center. Which we should have done from day one.
The previous treatment my mom took caused her to be hospitalized . Its time for some new opinions and help.

Thanks
Heidi

I'm sorry to hear MDA was not able to offer more help. I don't have any experience or wisdom to offer any other worthwhile ideas. Don

I would look at the dr. Brian had mentioned who might be able to do the carotid surgery. I think that is likely - depending on your mother's health - the best option. Hugs my dear you are a terrific daughter.

So I need you to IM to me the patient name, the doctor that you were dealing with at MDACC and the dates on which all this took place. I need to understand this ASAP, because I have a call into the department head there and I want to understand how this went from one thing, to something completely different, and all this time transpired in between. I need to know that they did this and this is not something that you misunderstood their intentions.

I will understand this better after the call to him and let you know the inside story. In the meantime, now that this is not an option at MDACC, I want to talk to you off line about all the Hail Mary ideas, and also what you thunk your mother really wants, what the family wants which is maybe something different, and what is actually best for her. These are all really tough calls now, and they are all scary. There is also the possibility that nothing can be done, and everyone should be prepared for that possibility mentally. But I will help you sort through the facts and the realities and the possibilities until you fully understand it. I am surprised that MDACC was into doing one thing and then they did a 180. That makes no sense to me and is not the way they operate as a rule. So something isn't right here and we need to understand that.

But I promise by tomorrow morning I will have ideas on what happened if you get me what I have asked for, options for you, if you spend 15 minutes with me on the phone w me and get me the info that I need prior to me talking to MDACC.

By the by, there is no such thing as an "MDACC certified" doctor. Many doctors go there to do their residency right after school, and because of the weight the name MDACC carries, they like to tell people that they trained there. That was for a year or two depending on the program, and it could have been more than a decade ago�.

I'm having my Father go through a clinical trial there at MDA. I have been talking to the clinical trial nurse and she is doing the best she can to get him started. Mind you we are in Georgia and will be traveling to Houston. Keep calling the medical oncologist office, don't give up until they tell you what is going on. I will send you a private message.

Brian

I sent you a Pm message explaining everything from day one at MDA. Please let me know if you get it.

Connie
I will send you a message

Have call into MDACC with no reply yet. You need to get into Tulane or somewhere and get restarted asap. So this contact at MDACC is to find out what went off the rails, or what miscommunication took place, to figure out IF and why they changed their minds, and why if that is the case it was handled so poorly. It may take a couple days to break through. So don't do anything please. Keep working on local possibilities. I will reach out to you by PM as soon as I know what's what with MDACC.

Thanks Brian

I had a busy day today. I have a new Oncologist who will have a meeting with us tomorrow on Friday at 1:30 pm.

After sending message after message to MDA I started to get return calls. The oncologist at MDA said she would order a standard chemo treatment for my mother. Carbo/Docetaxel.
We accepted the treatments. We were asked if my mother wanted to take the treatments in Louisiana which sounds better to me because I don't think my mother can handle the travel again at this time.

So this new doctor will communicate with MDA on the treatments. Hopefully things will start looking up and after treatment my moms pain and swelling may go down some.

Thank you Brian for being so caring. Your help is very much appreciated .

Heidi