Types of radiation therapy and chemo therapy combinations

I am hoping for a good outcome for your husband. Be patient with him because he’s got a hard road ahead. I was very difficult to deal with because I wouldn’t eat. Don’t try to force him. It will do more harm than good. Radiation is super painful and I’m sad for anyone who has to go through it. Get Aquafor for his neck to rub on. Start that immediately and also try Helios for his throat. They both were a really big help for me. Later maybe ask for a Gabapentin script if he has tongue issues. That helped me too. Saying prayers for you both. 🙏🏼

I was diagnosed with HPV cancer of base of tongue March 2023. I had TORS surgery to remove tumor and lymph nodes through right neck dissection. 2 of which had cancer. I am 57. I chose Proton vs Photon Radiation as I feel it is much less damaging . In my opinion Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is 50% less costly or more. Proton is like a pencil beam hitting the target and stopping. Photon is more like a flashlight beam which travels through the target area. I had to drive an hour to Proton treatment. Alot of people drive much further. Currently I am 120 days post 30 rounds of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth,Neck, tongue and swallowing exercises prior to proton Radiation. If you have a Speech therapist they can help you with this. It was a struggle to eat during radiation and I FORCED myself. He will lose appetite and everything has no taste. However as far as today 120 days out of treatment. I can eat and drink about anything I want. My taste buds are about 35% and seem to be coming back . My throat mucositis is almost gone away and Saliva production is slowing getting better. My hair has stopped falling out. My stamina is back to about 80% . I chose no Chemotherapy as they could see the tumor through a PET scan. As I understand Chemo will travel throughout the body to "find" the cancer and attack it. Has he received a full body PET scan?

The problem with radiation is that the after affects can appear out of nowhere at any time. I thought I was free and clear, months after the same treatment for my throat cancer.

Thank you for your response. Just starting to look at other options. He just had surgery last week and originally he thought it would just be surgery and maybe radiation but hopefully not. The outcome of the surgery changed that and now the plan is another surgery, radiation and maybe chemo. That was unexpected and a disappointment. His oncologist has a lot of experience as evidenced by his published research. But I know educating ourselves is important too for informed discussions and decisions. Trying to gather that!

My neck was very very burnt externally from the radiation, and I was advised by my care team at Mayo to use 4 products in conjunction with each other to assist in healing:
• Aquafor/lidocaine mixture,
• Xeroform (Dukal Xeroform Petrolatum Gauze, Sterile, 5" W x 9"),
• Domeboro (Domeboro Rash Relief Medicated Soak, Calming & Soothing, Powder Packets)
• Gauze that was like a turtle neck (couldn’t find the exact brand).
Two or three times each day, I would first soak my neck using a medicated wash called Domeboro. I would dip a bandana in the solution and wrap it on my neck for perhaps 20 minutes. I would then mix Aquafor and liquid lidocaine 50/50%. I would open a Xeroform strip, unfurl it, cut it in two pieces and spread the Aquafor/lidocaine mixture on one side of the Xeroform and put it on my neck with the mixture against my neck. I would use the gauze to hold it in place. I would leave it on for perhaps an hour or more, until it felt like it was drying.
For me, after the Domeboro, the skin actually looked kind of white and gelatinous. As it healed, the skin area like that decreased, I guess meaning it was healing. I did this for close to 2 months after treatment until my neck appeared healed.

The problem with radiation is that the after affects can appear out of nowhere at any time. I thought I was free and clear, months after the same treatment for my throat cancer.

My experience is radiation issues can go on for years, nephropathy being the main one not to mention bone death (osteoradionecrosis) and the lasting effects of disfigurement both internal and external. This is why I advocate for Proton beam rather than Photon because accuracy matters. Any doctor who doesn't agree with that statement is welcome to join any of us on the table with our heads strapped down. Still, any radiotherapy is better than death most would agree.

Dana Farber is a highly regarded hospital and especially for head and neck cancer. They are actually involved in clinical trials using proton therapy. There are options with lower radiation and chemo or even no chemo depending on the stage. I was treated at Mayo Clinic and they are doing less radiation and chemo and getting good results depending on the stage of cancer. If I had the ENE I would want the chemo though to help lessen the chance of spread. They are being cautious since they have not found the primary site it sounds like. There is no harm in also getting a 2nd opinion from another center such as Mayo Clinic, MD Anderson, MSK but Dana Farber is a VERY good hospital and I believe it is ranked as #4 in the country for cancer.

Thank you so much for your reply! This will be really helpful if he has a reaction similar to yours. Sounds rough though and I hope your are all healed up now!

Getting my results for my 3 year scan today. The radiation, as many have experienced, caused extreme skin and and muscle tightness. I also have a number of red spots and blotches which I believe are capillaries that burst. All-in-all, it's quite manageable.

At the end the day, it's a small price to pay for getting rid of the cancer.