Types of radiation therapy and chemo therapy combinations
Hello - my brother was just diagnosed with HPV cancer and had removal of lymphs nodes through right neck dissection and removal of right tonsil. He is 56 and otherwise healthy and very active. There was cancer in only 1 or 30 lymph nodes but it was large and the cancer was outside the lymph node (extra nodal extension). They did not find cancer in the tonsil and he is now scheduled to go back for the TORS surgery to remove the lingual tonsil. They are unsure if they will find cancer in the other tonsil and think there is chance they will not find the primary site. He is told he will need radiation for 6-7 weeks and likely chemotherapy as well.
My questions;
I've been reading about Proton therapy radiation and it seems like it is better tolerated with less side effects. He is at Dana Farber and they seem to have an excellent Head and Neck program but I don't see on their website they offer Proton therapy. What can people tell me about proton therapy vs. traditional radiation and is worth seeking out a 2nd opinion at a center with proton therapy? I've also read about DART and wondering if others have chosen that?
Chemotherapy was discussed but there was no mention of immunotherapy. Wondering if others have been offered immunotherapy? The doctor seemed to indicate that although
he was leaning towards recommending chemo that it would be reasonable for my brother to decide not to choose chemotherapy as the research is limited. My brother has hearing loss in one ear already and I've read that one of the side effects of the chemo used for HPV is hearing loss so this is of course a concern.
Thank you ahead of time for any thoughts, suggestions or recommendations to further research and discuss with his team. My best to you all!
Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.
7 years ago I was told that proton doesn’t work and that “old school” is my only chance of killing my stage IV cancer.
I had 35 rounds of radiation and 3 rounds of Cisplatin.
I had left ear pain and hearing loss prior to treatment and continue with that still.
The Cisplatin did cause tinnitus which will most likely be for the rest of my life but I’m ALIVE!
MOJO
I had chemo and 35 radiation. There are two types of chemo. One is harsh and can cause hearing loss. I took the milder dose with less side effects. He needs to ask about the milder dose. I'm in Winnipeg Canada.
Perhaps check that out.
I just had my follow up CT scan yesterday and will find out results of treatment at month end.
Good luck. Sending good energy
Whoo hoo 🎉👏🎊
Clean scan yesterday! 3 year mark. Woohoo!
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.
Thank you for your response. Yes, exactly, they are being cautious. His doctor said that if you asked 10 doctors, 5 might lean towards chemo and 5 might not and none would be wrong. But he is leaning towards chemo and I think my brother will follow his lead. He is also looking in to second opinions. Take care!
Yes - I think you're right - most are willing to do whatever is recommended. Hope is the driver. Thank you for your response.
I hope you're feeling better now! Take care.
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!
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.