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