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