VMAT vs. Proton Radiation for BOT Cancer

Swoosh13

Hi All,

Starting this journey with my husband and I've been doing a ton of researching on this board for us/him. He was diagnosed with Stage I c2TN1MO HPV+ 16. Primary is about 1.2 cm at the base of his tongue. 2 affected lymph nodes on the same (left) side. He had a lymph node swell that he noticed end of April. Saw his endocrinologist and PCP early May meanwhile I had made him appt. with my ENT (big teaching hospital but with no Proton yet till 2025). Had US, CT and biopsy. Two weeks later he had his first PET with no spread anywhere. Were into hospital two days this past week. Tuesday with surgical oncologist and she doesn't want to do surgery (first of all she believes he can have a "cure" of 90%ish with just radiation/chemo). Also even though she does TORS and even though it's Stage I, it's far back base of tongue so they do not want to do surgery and impede his swallowing when they are most certain radiation/chemo can get this. So here we are, saw Rad Onc and Med Onc on Thursday and Tumor Board (all 3 drs) saying 7 weeks Radiation (VMAT I'm pretty sure as they do not have Proton) with our choice of 3 Cisplatin in larger doses or one each week (7) in smaller doses. They said much less risk of permanent hearing loss if we went with the 7 doses? They are setting him up with an audiology test for baseline hearing so we can decide. Meanwhile August 7 is the CT and MRI to make the "mask" used during Rad treatment and said he'd start treatment maybe 2 weeks after that. Has a regular dentist appt. on August 8 (just coincidentally).

So, we reside in southeast WI. Both Mayo Clinic and Northwestern University (near Chicago but 2 hours from us) have Proton radiation therapy. Has anyone here with similar diagnosis had Proton therapy as it "appears" to have less short/long-term side effects? Mayo when I called said it would take 4-6 weeks for a consult (yikes, not sure it's worth even talking to them). I'll be calling Northwestern on Monday to see how long it takes for a consult. Where his doctors are now the website says we can see you in 5 days (and literally it wasn't much more than that to get in).

Any and all comments appreciated. We already know with VMAT radiation how tough this is going to be.

wbcgaruss

Swoosh, welcome to the CSN H&N discussion board. I am sorry your husband has to deal with this.

I don't think I can offer you a lot of suggestions as to how to progress. It seems you have gathered plenty of information and have your treatment plan about all laid out. He has had scans and biopsies. They have everything well mapped out and documented. You have plenty of doctors and have met with the tumor board. You are all set. Is this doable-yes. I and many others on here have gone through the 7 weeks of radiation and I had extra chemo before that started to pre-shrink a throat tumor then I had chemo beginning middle and at the end. It is doable but I would imagine your care team told you like mine told me it is going to be very difficult in the latter stages of treatment and then for 3 to 8 weeks following treatment as the radiation is still cookin (still active) in your body for a couple of weeks after treatment finishes. I had IMRT but your husband is having VMAT. I was not clear on the difference so I checked and found there is plenty of info on it just search "vmat vs imrt" and also you can search each out in a single search.

VMAT is a type of IMRT technique. VMAT stands for Volumetric Arc Therapy. VMAT can also be called Rapid Arc. VMAT is different to normal IMRT in that the radiotherapy machine rotates around the patient during a radiotherapy beam in an arc shape.

You do question the possibility of Proton therapy, I have not had it but some on here have. It is the latest type of therapy to treat cancer, causing the least damage to surrounding tissues and organs. Has your care team mentioned Proton to you or are they confident in the radiation treatment plan you have? Anyway, that's the big thing with proton less damage to everything but the cancer.

https://www.youtube.com/watch?v=FuD4z9H8Pcg

Is your husband getting a feeding tube?

I would say the next thing coming up after starting treatment for several weeks your husband may get very thick saliva, even to the point of being stringy. The best solution folks on here have found for it is to spit it out and rinse a lot with a salt and baking soda rinse. Rinse as often as needed. Earlier on maybe not so often, every hour, or 45 minutes but later when it gets worse maybe every 15-20 minutes, he will be able to tell when needed. Helps to freshen and cleanse the mouth and keep the thick saliva cleared out. It is also advised at this time to sleep in a recliner or be propped up in bed as the thick saliva tends to head towards the throat if you are laying down and causing choking and coughing. I woke up a couple of times and was having trouble breathing because of this situation till I coughed and forced the stuff out any way I could and I was in a recliner. Treatment will also bring tiredness, fatigue and possibly pain so be sure you have pain meds ahead of time.

That's all I can think of for a bit, I am posting the rinse mix recipes below.

It helped me to trust in God and lean on him and Pray a lot

I am Wishing You The Best

Take Care, God Bless-Russ

Swoosh Here Are Recipes

For the salt/baking soda mixes.

Rinse as often or as little as needed to deal with thick saliva even the stringy stuff.

The trick is to stay ahead of it as best you can.

There are no easy solutions but this will eventually quit.

You may find it beneficial to sleep in a recliner to keep the thick stuff out of your throat and airway.

Laying down directs it to the back of your mouth/throat area.

Even in a recliner I would wake up at times with my air cut off and had to work at getting it cleared out.

Wishing You The Best-Take Care-God Bless-Russ

Mouth Rinse Recipes to Use During Chemotherapy

Soda and Salt Mouth Rinse

1/4 teaspoon baking soda

1/8 teaspoon salt

1 cup of warm water

Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

Soda Mouth Rinse: A Good Rinse for Before You Eat

1 teaspoon baking soda

1 cup of warm water

Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

Saltwater Mouth Rinse

1/4 teaspoon salt

1 cup of warm water

Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

Salt and Soda Rinse for Gummy Mouth

Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

1/2 teaspoon salt

2 tablespoons baking soda

4 cups of warm water

This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.

Peroxide Rinse for Crusted Sores

If your mouth sores are crusting over, it's important to allow the natural healing process in your body to continue, so a peroxide rinse should be used for no more than two days consecutively.

1 cup hydrogen peroxide

1 cup water or

1 cup salt water (1 teaspoon of salt in 4 cups of water)

If you have crusty mouth sores, try using this rinse three or four times a day for two days. Don't use it for more than two days at a time, because it could prevent mucositis from healing.

Use a non-peroxide rinse for two days, before returning to this mixture.

wbcgaruss

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!!

https://vimeo.com/78791415

Take Care, God Bless-Russ

Swoosh13

Hi Russ and thank you for all of the wonderful information. No our team did not bring up Proton treatment as they will not even have that modality available until 2025. Pretty much the closest is Northwestern University in Chicago a 2 hour drive for us. Here’s the thing so far. I already knew from his CT before the actual biopsy what we were looking at so then I found this Board and read as much as I could before his PET and our Surg/Rad/Onc doctors this past Tues & Thurs. I was also pretty certain it was HPV+ because he gave up smoking 35 years ago and maybe has a drink once or twice a year. So we went in with a ton of questions that I asked (I’m amazed at all the guys on here that write on their own on what they went through vs their spouses). I certainly don’t mind doing the research and asking the questions as he has to go through the treatment. We are very fortunate that we’re semi-retired (he’s 66 and I’m 63) so his boss already told him do your treatment and come back 2 days/week after it’s over (he delivers small auto parts and loves the flexibility of his job). Also I only work PT 2 days a week so I can drive him when/as necessary as things progress. So much to learn but our team is giving us a lot of hope so far.

wbcgaruss

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

wbcgaruss

So very good Swoosh, he has the time to devote to treatment and get well and not worry about anything else.

Also, the fact your team is giving you much hope and you have confidence in them is a big factor.

35 radiation treatments is pretty much the standard for many head and neck cancers, it gets rid of the cancer without the debilitating results surgery sometimes has.

The negative to this is he will have some after-effects from the radiation and chemo but they will mostly be temporary and will go away with recovery. But some could stay, such as some of us have reduced saliva, or neuropathy depending on the chemo drugs used, and some have changes in their taste. Generally, we go through treatment and adapt and get used to any changes we may have to live with and it sure beats the alternative. So your care team is trying their best to eradicate his cancer causing the least amount of collateral damage and side effects as possible.

They will Eradicate this cancer, be confident, be strong, and Pray.

Take Care, God Bless-Russ

christos01

https://csn.cancer.org/discussion/326858/vmat-vs-proton-radiation-for-bot-cancer

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.

wbcgaruss

Swoosh, Christos brings up a good point. Thanks Chris.

Run it by your team as to whether your husband should have a feeding tube and or a port. He is correct depending on the chemo and the amount they will give you it can be very hard on your veins.

https://www.youtube.com/watch?v=FiDQAfF2TKc

I had both the port and the feeding tube and I'm glad I did.

They help you get through a difficult time and then they are removed after treatment.

Ask your doctors, they know your situation and they will know if he should have either one.

Take Care, God Bless-Russ

donfoo

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

Swoosh13

Hi Christos01 and Donfoo thx for answering. I asked about the Navdx that Christos mentions and they do not do it, maybe out into the future years. First the surgeon and rad onc said they don’t do prophylactic feeding tubes. Would only put one in if Hubbie started losing way too much weight. Med Onc mentioned the port so we will ask more about that. He’s getting 70 Greys to BOT and 50 Greys to each side of neck (the 2 lymph nodes are on same side as BOT tumor; nothing on the right). Will still be calling Northwestern tomorrow about Proton rad to see if it’s even an option. Meanwhile I wrote to his rad onc late Fri through My Chart to ask about it, hopefully he’ll respond tomorrow. I believe they’re going to set us up with some kind of education or a class to tell us the finer points. Also want to ask his med onc how much Cisplatin he’ll get in either 3 doses vs 7.

Quiet

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.

LuvnTN

I did Proton... and there are fewer short-term and long-term side effects as noted by others. However, I did read something a while ago that caught my attention. Since the Proton beam has max intensity at the point of the tumor, there appears to be some growing evidence that it might present some longer-term issues that are not experienced with other types of radiation. Also, since Proton is newer and less-frequent, there is not a great track record of longer-term side effects... and I am referring to the issues that pop up 7, 10, or longer years post treatment that people report with IMRT or other forms of radiation. The issues would affect more internal structure... where the intensity of the proton beam is at its max. While I am not really experiencing any, real short-term side effects 1+ years after treatment, I am for sure expecting something to be an issue around my throat and tongue sometime down the road.

Proton's benefit really come into play if only one side of the neck is going to be treated... because that leaves the opposite side completely untouched by radiation. However, if both sides have to be treated, then there might be some longer-down-the-road issues that might be more intense with use of Proton than vmat/IMRT. If I can locate that article I read a few months back, I'll post it here as well.

Ultimately, either way will likely have down-the-road effects... so, the only way to truly avoid them is to evaluate the higher-dosage vs lower-dosage options.... if there are any presented by your care team. When I was deciding between IMRT and Proton, both of radiologists said they are proponents of the higher dose plans because it has fewer repeat patients? Don't know if that is the case nowadays or not.

Swoosh13

Quiet and LuvTN, so here’s where we’re at since this morning. It’s been moving at break neck speed (no pun intended). I called NWMH first thing this morning (in Chicago) and they scheduled us for 8/8 next week with Hem/Onc at 11:00. Meanwhile they took information for where my husband got all his scans (US, CT, biopsy and PET). Will have a third party co get scans for them. A couple of hrs went by and I got a call from Hem/Onc’s nurse that they want us to see surg and Rad Onc. I went on to get my hair done. As I was sitting with color on my hair 2 nurses call. I called the Rad Onc nurse back as I wasn’t sure when I’d get home. They scheduled both of those drs for that same aft as they knew were driving in from WI. Got number for their financial office which I will call ASAP to see if our insurance will cover Proton. Their Proton center is not at NWMH DT, it’s 30 miles west in Warrenville, about 1-1/2 hrs from home. What we know from our local med Onc is he’ll also need either 3 Cisplatin or 7 weekly lesser doses of it. Primary tumor BOT and 2 lymph nodes are both on left side of neck (thus Stage I). Per our local surg Onc they did not want to do any surgery as not to affect his swallowing because she said rad/chemo would do the job alone. After Mayo told me 4-6 weeks just to get a consult, we were pleasantly surprised to get in next week. Also NWMH is a major NCI accredited teaching hospital as well. I feel having the second opinion and so quickly will bring us some peace.

LuvnTN

Yes, if you are not having surgery, and only two lymph nodes on one side (in addition to BOT site), I would think that would be the ideal situation for Proton radiation (which is more-targeted). I had 30 sessions, and my place was 1 1/2 hours from my house. I logged quite a few miles during that 6-week period. But, you just deal with it. I did weekly chemo for 7 weeks, and my chemo facility was 30 minutes from the Proton place. Fortunately, everyone played well together.. and it was no issue coordinating. The decision you will probably get asked is whether, or not, to have a port installed. I opted for no port - and have weekly IV's inserted prior to infusions. As long as the nurses can hit a vein on the 1st or 2nd try, a weekly IV is not too bad. Also, I fasted 24 hours pre- and post-chemo infusion. The reason is listed in this video (I'll attach a link). Basically, I never had any side-effects of Cisplatin treatment. Don't know if it was just me, or because of the fasting.. but, you can listen and decide for yourself. The conversation on fasting begins about the 5:30 mark:

https://www.youtube.com/watch?v=FBIslLSL5n0

LuvnTN

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.

Swoosh13

LuvnTN, thanks for the wealth of info. Yes our drive too would be about 1-1/2 hrs each way. He obviously will not be working through this (we’re both semi-retired and only work 2 PT days/week). Our local hospital suggested either 3 large or 7 smaller doses of Cisplatin. How did you decide you wanted to do it weekly? Yes someone else on here said to ask you about the fasting b/4 and after. Just watched the video. What time of day did you get your infusions? Our chemo location is also located 30 min from the Proton (or better depending on timing) not sure yet if he could have chemo at NW Lake Forest after his Proton is done then only have 1 hour back home. All things we will find out on Tues.

LuvnTN

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.

Swoosh13

Hi LuvnTN, will be getting much more information on 8/8, cannot wait.

NW’s Proton Ctr financial coordinator called me this aft to say 1) our Medicare covers Proton therapy and 2) the Medicare Advantage insurance we have is in their network.

Now it all depends if the 3 drs we see on 8/8 think my husband is a good candidate for Proton. We shall see.

Thanks for all the info on fasting, etc.

wbcgaruss

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

Swoosh13

Russ, once again you are a wealth of information and a Ray of hope and faith for the rest of us, especially those just starting out like my husband. I look forward to everything you share.

LuvnTN

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!