On June 2nd, Brandon saw a ball that appeared on his neck. We took him to the hospital thinking it was an infection. He then met with his surgeon on June 4th and his surgeon recommended a fine needle biposy. The fine needle biposy was done and cancer has returned again!!!

We met with the Chemo doctor yesterday and he said: The cancer returned on the same side (left) but not exactly the same spot. Its in the lymph nodes but growing outside of the lymph nodes. It is not resectable at this point. I would suggest clinical trial. We have a phase 1 clincial trial using Immunotherapy. THe standard of care would be chemotherapy a combination of three drugs- carboplatinum (you had one of those before) 5 Flouriclse and cetixcumab. I have one clinical trial using the standard care using these 3 combinations with immunotherapy but not everyone will get the immunotherapy (it is 50/50) as it is a blind sided study.

I then asked him about the radiation.. his response was: he already had radiation but the complications is much higher. in the neck you have coretied atery and you can have a coretered neck blow out.

He said at this point when you have cancer coming back at the head and neck area that is not resectable technically its not curable. but we can treat to try to slow it down but it is not curable. We did discuss this at the tumor board and we discussed that we can not re-resect. "i have never seen something this young." I don't see anything outside the neck area.

My brother then asked what is the cure rate and the doctor responded "when you have local relapse and we can do surgery like we did the first time that is about 20 to 30% cure rate. Now that failed and its not resectable the cure rate is less than 5%."

We asked the chemo doctor "why cant we do radiation" his response was "the problem is he is not going to be able to deliver a high dose because this area was treated with radiation before and to be honest with you your tumor grew right after we did the chemo and radiation so the radiation did not work that well"

Trial 1- chemo with immunotherapy or chemo without immunotherapy. you may or may not get the immunotherapy.
Trial 2- 2 drug immunotherapy.

He thinks both trials are very equivalent but said "your case is very unique, because we did the chemo and radiation and thats the best treatment we had and we did not succeed" "immunotherapy is a diff approach to your cancer. If im your place i would do the immunotherapy. its very promising we were seeing very good results in lung cancer."

If i didnt have a clinical trial i would have you go with chemotherapy a combination of three drugs- carboplatinum, 5 Flouriclse and cetixcumab.

Its about 2 weeks to do the Phase 1- immunotherapy clinical trial. The tumor is still local, but it is direct invasion, it could spread through the blood stream thats when it goes to other organs but we dont see any signs of that. I feel like immunotherapy would be your best chance.

We asked the doctor "in the tumor board why did they say they cant re-resect?" his response was "because it is invading the floor of the neck, your muscles of the neck. he can not get clean margins and if you cant get clean margins, if you cant get clean margin and remove all cancer then surgery is not helpful"

I asked him, if he was your son would you wait 2 weeks for the immunotherapy? HIs response was "i would do a clincal trial. If you dont want a trial- i can treat you tomorrow. 2 weeks wouldnt change the outcome. Its better to make a right decision than to rush."

this is the study that he thinks is better:

https://clinicaltrials.gov/ct2/show/NCT02262741?term=medi4736&spons=medimmune&state1=NA%3AUS%3AMI&rank=3

https://clinicaltrials.gov/ct2/show...ecr=Open&rank=1&show_locs=Y#locn

Im so sorry for the novel! I just need help. I am going to write what the radiation doctor said in the next post.

I asked him: What can you do for him?? I heard that chemo just softens up the tumor. People have done radiation more than once. If he wasnt targeted on the left neck then why cant you do the radiation on the left?

this is what our radiation doctor said: so the whole area was treated about 6 weeks of radiation and his tumor grew despite of that and this means his tumor was resitent to the radiation.

I told him i thought the left was from a far and not targeted and he said "it was treated".

We can give 3 or 4 more weeks of radiation but you are talking about a tumor that survived 5-6 weeks of treatment already. whenever we add more radiation there are no more tissues and the neck gets affected, one im most concerned about is crotted artery. Artery can rupture and cause bleeding.

I then asked what about brachytherapy. His response "it is a way of giving radiation just around where we put the needle but in this case it is a diffused area. it is sitting next to the croetted artery." we know this tumor is resistent to radiation. I don't think radiation will help you at this point. I recommend the clinical trials.

i then asked what about "proton radiation" his response "proton radiation is a type of radiation that can deliver radiation to very specific areas and in this case as i mentioned before treating this area is not a big issue, its treating microscopic cells thats the issue. there is definitely microscopic cells."

Me: WHat about intraoperative radiation? Drs response "intraoperative radiation is when you open the tumor up and give a very high dose radiation to just that area that the tumor was sitting on. In his case the problem is the tumor is sitting on the croetted artery." Too much radiation on croetted artery is not good.

At this point there is no one standard care for this situation.

Well, this is just awful news. I am so sorry.
Personally, I would be wanting to get into an Immunotherapy trial.
I'm presuming that you have read Brian Hills posts re Immunotherapy Trials in the General Board section?
Thinking of you and Brandon.
Tammy

Ak123, I left you private a message. This was pretty much my scenario also. The cancer was out of the lymph nodes, basically free roaming, after several treatments, and surgeries. I mentioned the last curative treatment I had was in 2013/14, a neck dissection to remove the cancer along with resecting a section of the common, internal and external carotid artery, and IORT during surgery. Then I had 5 weeks of Proton Therapy with Carboplatin. I pretty much had this same treatment a year earlier, besides the prior radiation, surgeries, and chemo before that, Not all doctors can or will do this, and have bern turned down for certain treatments along my travels the past 5 years. You have to find that experienced doctor to see if it's possible to do curative treatment, maybe it's not, if your brother wants, otherwise all others are going to say the same thing, which is doing palliative treatment with chemo/immune therapy, which is an option also. Some use it to shrink the tumors to see if further surgery, radiation can be done in the future.

There are risks. To have the carotid artery removed they do a Temporary Balloon Occlusion, TBO, and a Cervical Angiography, which have risks too, to see if you're a candidate, and can function with one carotid artery. I did not have a vein graft as cancer was on the artery, and needed more radiation. Even with the resection, there was still risk of carotid blow out at the stubs, 17%, from further radiation, but as discussed with my doctor, it was worth the risk since cancer had a 70% chance of coming back, and with my prior 7 (see Mets), it was most likely. If needed, I can give you the names of some doctors.

I just had my 3rd follow-up scan last week, and again showed no sign of cancer, which is the longest time span, 13 months, I had without a recurrence,

Good luck, and best wishes.

AK123, I'm sorry that you and Brandon are going through this again. It is extremely hard to be making these decisions. My husband was in a phase 1 immunotherapy trial last year. At the time, it was monotherapy, meaning he was given only the trial drug. We were told by our MO that she had patients on the drug who did show tumour reduction. So, it is a possibility that you might want to consider.

Gloria- did the immunotherapy help your husband?? I see that your husband stopped immunotherapy 7 months later.

AK123

Please Please Please

This is a very serious Prognosis

I tried to get my mother to see a doctor who would do the surgery on the Caroited Artery but she was to scared to do it.
But look what happened to my mother . The cancer was on her caroited and it caused a blow out. It took her life fairly quick.
Don't waste time . Get to a surgeon who will get that cancer off that Artery.
Paul B knows the names of some Great Doctors. Take it and run. If you don't then chances are very grim.
Heidi.

I'm so sorry about your mom. Can you tell
Me name of doctor, Hospital where the doctor wojld have done the surgery on your mom. Time is of the essence right now! Please help!

Ak123, my husband was demitted from the trial because of a swollen lymph node in the paratrachial area. He then received chemo (taxol and carboplatin) and is now in a second clinical trial. His metastasis are in the lungs and so his case is different from Brandon's. In palliative situations, it may be more realistic to look to stabilizing the tumours. That is buying time; who knows new treatments may come along at some point.

Ak123, I left you the names of several doctors background, location and contact numbers in pm. I hope this helps.

Ak123

PaulB sent you the names of some great doctors . These are the same Doctors he sent me for my mother . Look at your Messages you will see the names PaulB sent you . Like I said take this info and run with it . Time is of the essence for sure .
That cancer will begin to wrap around the artery and become more difficult to remove . It may not be to bad at this point . But the cancer must be removed .
Or it will cause a blow out and take his life .

My mom went through so much radiation and chemo and the cancer would not respond to nothing . She was so tired and began to get very sick and weak as the cancer started to spread . She was just to sick to go through another surgery . The thing is my mother was a very strong women from the beginning but as time went on and so many treatments trying to shrink that cancer off that artery it just brought her down . Instead my mom should have had the surgery on the Carotid to remove the cancer . Is it risky yes indeed it is . But what are your chances otherwise . I hate to say it but they are grim .

Look in your messages from PaulB . Get those names of those doctors . Do some homework on it . Run fast .

Just trying to help . I would hate to see what happened to my mom happen to anyone if there is a chance it can be avoided .

Heidi

Ak123, I had one of the carotid arteries, there are several, involved with cancer back in 2011. It was scraped off, and alloderm was placed on it to protect it, which the surgeon said he would have done a pec flap since I was originally just planned for a MRND, but had a radical instead. Then another surgery for cancer, different hospital, ENT had to take the alloderm off, and pec flap was placed, so I could have more radiation. It may not be necessary to remove any as the CT, MRI does not always show the exact involvement with all the inflammation, fibrosis that can mimicking carotid involvement when there is none, and if it's not wrapped around more than 160 degrees, I believe, they may not remove, just scape off, and there may be different risks depending on what's involved, the common, internal, external carotid artery or one if its branches.

Here is an article that may be helpful.

http://emedicine.medscape.com/article/850738-overview

AK... PaulB can give you the info you need. The dr. is doing what he feels is right within his knowledge base. Your mother and brother need to now look outside this and move on to someone who can do more for him. I would take Paul B's advice. He's been in the same situation. Make arrangements to get all of his medical records and have them sent to whomever he suggests. Your brother is very young. He has this going for him in terms of being able to handle more treatment. If your mother has to take him out of state for treatment then I would suggest she do this. In this case there are two options... proceed with clinical trials.. (which have a limited scope in terms of cure) or seek a different surgeon/ENT/onclogist who can offer you more than just a trial. It does sound as though his cancer is resistant, so surgery in the hands of a skilled surgeon with what paul suggested... Intraoperative rads (specified area/smaller radius less damage) and proton therapy is your best and most viable option. People tend to hold on to hope that a trial will work, and for some it does. But when there are other options in practice (proton therapy. Intraoperative rads.) then Trials should be used either in conjunction with them (if possible - some trials don't allow this) or they should be a last case scenario.

Hugs.

Best of luck.

Hi AK - Just checking in and sending positive thoughts for everything to go well with Brandon's appointments today and tomorrow in New York. Whenever you can, let us know how you are doing.

AK and Brandon, you both are in my thoughts today. I hope the appointments turn out with some curative options. Im so glad you and Brian Hill were able to connect. Brian knows more than all of us here combined and has the right connections to get you to the top doctors who hopefully are able to help.

Waiting for your update...