VMAT vs. Proton Radiation for BOT Cancer

Also, Swoosh, one other thing you may want to check out is the Superthread at the top of the page of the H&N section it is loaded with info and links that may be helpful to you.

It seems to open at the bottom so you will have to scroll back up to the top--

And here is a neat video in the Superthread and I think it is depicting the VMAT form of treatment--

My Radiation Treatment

So 118 days since I have completed radiation therapy, an MRI and a PET scan and no signs of recurring cancer. I still have a long way to go before I am in the clear for sure but early signs look promising. Funny with all that I have been through I feel happier and healthier than I have in a very long time, so for me I would say that cancer has been as much of a gift as a curse. Thank you to everyone for all of their love and support. I can't tell you all how much it means to have so many people who care about you and every little note and like helped! So being in the film biz i thought it appropriate to documents some of my experience so here is a fun little Go Pro video I made throughout my six weeks of daily radiation treatments. I am happy that the incredible staff at The University of Pennsylvania let me mount my cameras all over their machines. I am pretty sure some of these shots are a first! It almost makes it look fun and I think the song is more than appropriate, props to Imagine Dragons! Love you all!!

Take Care, God Bless-Russ

Also, Swoosh, one other thing you may want to check out is the Superthread at the top of the page of the H&N section it is loaded with info and links that may be helpful to you.

It seems to open at the bottom so you will have to scroll back up to the top--

https://csn.cancer.org/discussion/261072/superthread-read-only-contributed-by-sweetblood22#latest

Hi swoosh,

sorry to hear abt the diagnosis, I was diagnosed with the same . BOT and lymph nodes on one side. They recommended cisplatin and radiation for the same reason it was far back. Was in the same dilemma Chose VMAT instead of proton bc I would have to take the train into the city daily , didn’t know if I could handle that. Chose the weekly cisplatin ,maybe ask abt a port because the chemo was very hard on my veins. No sugar coating it . The treatment sucked and it’s rough . Was fortunate not to need a feeding tube , for me toughest from the last week and two weeks after. If the proton was closer think I would have gone with it. I’m 3 months out and my neck is still sore but I’ve been eating for awhile, still no taste . they schedule my pet scan and also took the dvax blood test before and after treatment. VMAT is a proven treatment. I’m assuming he’s going the same treatment 70 GY radiation. God bless I’ll say a prayer tonight for a speedy treatment and recovery.

Hi Swoosh,

Sorry to find you here. But , stage 1 is very good as far as prognosis and the treatment options. Every case is unique so only your medical team and specialists can determine the various options, risks, side effects, of each. It's been some years now for me but proton at the time was effective while reducing side effects of the radiation as it can better target the area. Surgery is quicker and less long term side effects, all general statements of course. Rads and chemo generally take the longest and potential for more long term side effects.

I've been in the club for a long time and I want to let you know that stage 1 diagnosis is just getting on the scale and I can not remember any instance where there were long term issues and current day this can be sorted out.

Second opinions are always an option but honestly at stage 1, I doubt you are going to get much more insight or options. Of course, they can offer more comfort for those involved but that is a different reason. Good luck

I personally went with proton. The upside of that treatment is that it is much more targeted. The hope is that it does less damage to the rest of the neck/head compared to things like vmat/IMRT. A lot of the issues with radiation have nothing to do with killing cancer, it is the damage done and the issues one lives with after treatment. I don’t have personal experience with vmat/IMRT, but believe there is more side effects associated with that style of radiation.

Not all insurance covers proton. It is not offered everywhere as well. I personally traveled for proton and went through an appeal process with my insurance company.

My docs also wanted three large doses of cisplatin-but I didn’t do well with it. My second dose had to be delayed based on my blood panel and I never received the third dose.

Your doctors will advise how urgent you need to take action. I personally discussed options with several different doctors before getting treatment. Different docs and hospitals take different approaches. Just try to make sure you are dealing with a real cancer center that has experience with head and neck.

One note: when I wrote the "I never had any side-effects of" the chemo... that is not true. I did develop the mouth sores (which I managed with a red light wand device). The side-effects I was referring to is the nausea/vomiting/tiredness, and not able to hold down food post treatment. Also, I didn't get the feeding tube because my care team recommended not getting it so that I would have to rely on my chewing and swallowing throughout the treatment (always having the option to get one installed later if needed). So, yes, the mouth sores did happen... but, radiologist blamed it on the chemo and the oncologist blamed it on the radiation. The red light therapy is really all i used to treat it.. and it worked pretty well.

I wasn't given an option for 3 large doses.. so, until I got on this site, I thought everyone did it weekly. In hindsight, 3 doses would have been easier, scheduling wise... but, don't know if as effective as weekly. On infusions days, I scheduled those early in the morning. They lasted all morning.. and then we (my wife and I) would drive the 30 minutes for radiation. The radiation location always tried to schedule me in afternoon of infusion days... also, if I arrived late, they always worked me into the rotation. That way, if i had a 8 or 9 a.m. infusion, I would just start my fast 24 hours before the infusion. So, I would eat some eggs or smoothie before 8 a.m. the day prior... and not start eating until the evening of the day after. sometimes I would extend the fast either way depending on whether, or not, I was very hungry. The two facilities should have a protocol for working together on scheduling like mine did. The ol' saying "this ain't their first rodeo" applies.

I had two one-week stays in the hospital to get 24 hours a day of chemo for 5 days. I was originally supposed to get 3 of these. Easy the first 2 days but about the third day I started feeling crappy and somewhat nauseous. This was to pre-shrink my throat tumor before radiation and my regular 7-week treatment. This was to avoid the possibility of radiation swelling the tumor before it started shrinking and cutting off my air which would then require a trach. I prayed that the chemo treatment would shrink the tumor more than they could have imagined. Well, guess what, my prayers were answered. When my ENT checked me out after my second week of this treatment he was amazed at how much the tumor had shrunk and said he had never seen anything like the results I had before this. So the last treatment of weeklong chemo was dropped. God hears our prayers and answers according to his will.

That cleared me to get the regular run of treatments I was originally scheduled for, 7 weeks of radiation, 35 treatments, and chemotherapy at the beginning, in the middle, and at the end of radiation. So I had the 3 treatments of chemo and in my case, there was no other option offered.

I would get the chemo the same day following radiation and I remember it took a while till they gave the bags of chemo required then I think they did 2 bags of follow-up flush which I am not sure what was in it but because you need a good bit of hydration with the chemo and they wanted to be sure you had it rather than trying to drink enough. They also told you to drink plenty of water and liquids.

I guess it is up to the individual if you want to do 3 and get it over with or do 7. Also, some people get very sick with chemo so a 7 time lighter dose may be what they need.

Take Care, May God Bless & Watch Over You

That is great news regarding Proton being approved for coverage. The teaching hospital I went to did not have Proton. My ENT and oncologist didn't really provide guidance on one form of radiation or the other.. because that is not their area of expertise. Luckily, I had a radiation oncologist who was senior staff.. and, at one point, had considered leaving the teaching hospital to join the staff at the Proton facility. Now, in my case, both the imrt radiation oncologist and the Proton radiation oncologist were both men... so, I am going to use "he". Because I was initially only getting treatment on one side, the IMRT doctor said he normally would never say this... but, he made the comment that I would be the ideal candidate for Proton. However, since I had nodal extension, he re-thought his plan, and recommended treating both sides. The Proton doctor recommended both sides as well. Both doctors said that since both sides were going to be treated, it was basically a coin toss as to which way I chose to go. At which point, the IMRT doctor said if he were in my shoes, he would go IMRT because they didn't have Proton at their facility. Also, and more-importantly, he knows how experienced and qualified his own staff was... and wasn't familiar with the other facility's staff. The Proton doctor said the exact same thing... he would do Proton with his staff vs the other. The one thing the Proton doctor did say is that Proton is more "nuanced". Now, I had to look up what "nuanced" meant exactly.. since it was, in my mind, such a huge decision that was basically left in my lap to make. To me, I already had it in my head that I would rather do Proton.. however, the IMRT doctor really laid out a great presentation. It was a really tough decision... and it shouldn't be. After meeting with the doctors, just go with your gut... your first instincts. In the end, whichever one you choose will have some side-effects. What I didn't want to do is look back and regret not going with my initial choice because I second-guessed myself. Once you make your choice, just go with it and never look back. Good luck!