Robin's - Radiation Research and Experience

2012


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Background

I had my parotid tumor surgery on the right side on 10/18/2011, the pre-op FNA indicated benign pleomorphic adenoma, the frozen section during surgery said same thing, but final path came back acc.

When I was told that I needed to follow-up my surgery with radiation, my surgeon told me I should research the different options/types and to set up consults with different radiation oncologists to get all of my questions answered so that I could make an informed decision as to which was right for me. Here I will include what I gleaned from my research. If nothing else you can use some of the questions in your research.

Types of radiation I researched:

Neutron

Photon or IMRT

Proton

Below I will talk about the questions and answers I got when meeting with each of them. I always took my notepad and I had my questions listed before I went. Although in some instances maybe one question led to another, or there would be something I would ask or get told that I may not have written at the time. So in general with each meeting I also got a general impression of the doc and/or treatment and I will also include that. Keep in mind those general impressions are mine and might not reflect what is right or wrong. Just my opinion based on the conversation. 

Photon/IMRT:

Have you treated ACC? With what therapy would you?

Yes 20 times in recent years. I believe I'd use IMRT (thinking) and maybe some Tomotherapy

With what kind of results? I've never had a local recurrence yet

How long/number of weeks for treatment? 5 days a week less than 30 min each day except one day a week you will also meet with that doctor so prepare for an hour that day. Not sure how many weeks til we plan it. 6 - 8.

Where would I receive these RT's? Here, local

What are long/short term side effects, risks I can expect?

Skin redness, sore mouth, sore throat, dry mouth, fatigue

Can you keep the beam from damaging the saliva glands on the other side of my face?

No  And is that damage permanent? Yes

Is there anything physical I should avoid during treatment? (I had exercise/running in mind)

No, just don’t wear yourself out

What makes this therapy preferable over another?

Believes this is state of the art and this is the largest facility in the world. 

My point of view:

I was speaking to both the rad oncologist and his medical assistant. Some of the questions their answers differed on.

Pros: Local to my home Cons: side effects

 

Neutron:

How often have your treated ACC patients?

Most all of our head and neck patients are those diagnosed with ACC

In a case such as mine where we are looking at eliminating any chance of microscopic disease after surgery?

99 % chance that it does not recur locally. There is still just a small chance when you had traditional photon radiation (I couldn’t get her to pin down a percentage for photon to compare with)

How many weeks/sessions do you believe I need?

12, 3 times a week. We do Tues, Thurs, Fri. and come up once before treatment for initial setup.

What side effects/risks can I expect?

Neutron has harsher side effects than traditional radiation. We have concerns re: jaw, teeth, other side saliva, sore throat, sore mouth, Hearing, part of brain could be damaged (only seen in a small percentage of patients)

Can you keep the beam from damaging the saliva glands on the other side of my face?

No, we can try to minimize the dryness, we have things we can use, so that the dryness you get will improve but not during treatment

Is there anything physically I should avoid during treatment?

No

What makes this treatment preferable over other radiation?

Neutron much better nerve path to brain.

My point of view: There was such a serious language barrier to the rad oncologist’s and my conversation. I had to ask her to repeat things several times and that is also why some of the answers to questions above may not quite make sense. I came away thinking I’ll never know exactly what is going on in my treatment with her.

Pros: supposedly the best at wiping out cancer cells Cons: Have to stay away from home for treatment, its like a bomb going off in your head, language barrier

 

Proton:

Have you treated ACC with proton? For my type (leftover margins) successfully?

Yes, successfully, no local recurrence. We are taking curative measure.

How many weeks/sessions?

31 sessions 5 days/ week. We would split the dose to twice a day for the full dose.

What side effects long/short might I expect?

Fatigue, sores in mouth, skin redness, I asked about sore throat since everyone else mentioned it – they said no I should not get a sore throat.

Can you keep the beam from damaging the saliva glands on the other side of my face?

Yes, the beam will not affect the other saliva glands

Is there anything physically I should avoid during treatment? No, unless you become too tired

What makes this therapy preferable over the others?

Less damaging long term side effects (I mentioned neutron and he looked shocked and said Oh no, that is so damaging)

My point of view: I felt very comfortable with the knowledge and experience I was hearing about. It seemed like I was surrounded by the best of the best. This was the last radiation type that I met with and I was very conflicted after leaving there. I had start dates and scans set up with all three rad oncologists.

I was torn between proton and IMRT. My daughter ended this by saying “I’ll flip a coin”. In my mind I became upset that if she did it wouldn’t come up ‘proton’ so that answered it for me.

Pros: less damage to healthy cells, the team seemed way more knowledgeable

Cons: I would have to stay away from home for treatment

 

My Journal during my proton radiation treatment

 I started treatment on 12/12/11. It was to be for 31 treatment days and there are going to be a couple of holidays along the way which extends the end date. Each treatment day I would go twice a day as they would divide the full dose in half each time. I found out when I showed up for my first day that I was to get photon to my collarbone area ‘because it will be easier on the skin’ and proton to all areas above that. My rad oncologist also wanted me to meet with a fellow university medical oncologist about receiving a mild dose weekly of cisplatin (chemo) because the thoughts are that it makes the radiation more effective. According to the medical oncologist: “ACC likes to fight radiation. Cisplatin renders it so that it cannot put up a fight”

I also had a radiation buddy going into this. I knew that she was being recommended Cisplatin so I agreed to it.

An additional note here about my radiation buddy: Her name is Alayna and we found each other on the forum. We both had our parotid surgeries the same week, we both had the same diagnosis, and we both were scheduled to start our radiation the same day. I doing Proton, and Alayna doing IMRT.

I highly recommend posting a question when you get your radiation start date to find anyone else that is going to be going thru this at the same time as you. We communicated daily and nobody knew better than her what I was really going through and vice-versa.

I did not think of journaling my experience until 8 days into the therapy (and really not much of note would’ve been going on) so here is where I start:

Wed 12/21

Mouth is extremely dry in back by my tongue on Right side. Noticed when I woke up and was having a yogurt. Later went to the catered lunch at the proton center and found that my mouth was no longer dry.

Found a small rash on my lower back. Its been there since Sunday but seems to be clearing up.

(Note: This was from the chemo and weekly it would show up the day after chemo and go away the last day before chemo)

 

Thurs 12/22

Doctor visit today after morning radiation. Chemo day

Fri 12/23

I have a sore on far back right side of tongue has been here a couple of days now. May be here to stay.

Not too bothersome though. Face is looking a little red today after my morning RT.

 

Sat & Sun 12/24 and 12/25

I felt like I’d been hit by a truck on Sat. Headache throughout night and upon awakening Saturday morning. Some waves of nausea throughout day Sat but they would pass. Just a general lousy feeling and sore back of mouth area (due to fluoride trays?). felt better on Sunday but face and neck are definitely red on right side. Seems like every day my mouth is pretty ok and improving up until I put the fluoride trays in and then it just sets me back. Painful.

 

Tues 12/27

My sister and her family came to Florida to visit. We hung out together.

 

Wed 12/28

Feel pretty good but have a pretty bad sore throat. Did some sightseeing around Jacksonville with my sister and family

 

Thurs 12/29

Overall I feel good today. I think whatever sore was along the back side of my tongue is gone. Throat doesn’t seem as bad as yesterday. Chemo day today. Got my “magic lollipops” today. Not sure if I will ever need them. It took forever to get me set up on the photon table today. They thought I had grew. Had to redraw my lines,

 

Fri 12/30

Ok early on then chemo headache started around 10 pm. (I’ve started to realize that this is a pattern. Every week I get chemo on Thursday then have a real bad headache Fri into Sat).Took a vicodin but headache still BAD. Around 3 am took 2 ibuprofen and headache disappeared shortly after.

 

Sat 12/31

Headache gone when I awoke. Throat really sore all day, but felt better in the evening after having (too spicy) Thai soup. Then popcorn.

 

Sun 1/1

My weight is down 5 lbs today. Maybe just due to the light eating yesterday? Feeling ok today. Eating good too. I have noticed that I have my blink and brow movement back. Not 100% but almost completely. This is very encouraging because although it was only temporary from the surgery, my surgeon had told me that radiation would halt my nerve regeneration progress. While my rad oncologist had told me that it should not. Apparently my body is still repairing itself throughout the RT.

 

Week of Mon 1/2 Week 4.

I have felt better this week than I did during week 2. Over the weekend bloody nose started. Not dripping or anything… it just feels clogged and when I blow it there are chunks of blood.

Could be the weather though since its so cold here

This is the week that my rad buddy started having vomiting issues. Knowing this along with the chemo nurses advice, I took a phenergen for nausea ahead of time on Fri night. It later made me confused and stumbling. I don’t want to have to take this again.

I did not get the awful chemo headache Friday night. Woke up Saturday morning with only annoyance is a nose full of blood.

 

Sat 1/7

Nose is so clogged but I don’t want to breathe thru my mouth because it may dry it out.

 

Tues 1/10

Follow-up with the chemo doctor today. I told him I always have a headache the next night and he recommends taking the phenergen 24 – 36 hours after chemo (this was prescribed for nausea but he said it would help with any systemic effects) When he asked if I was having trouble eating and keeping my weight up and I said no, I actually crave foods- his response was I expect that’ll change soon.

 

Wed 1/11

Woke up several times throughout night with dreams of a sore throat and thinking the Doctor was right and now I can no longer eat. It was just a nightmare though – my throat felt fine

Nice relaxing day

 

Thurs 1/12

2nd rad doctor visit of week. My nurse believes that at this point in my treatment I’m probably exhibiting any and all side effects that I will get. Which is great since only my skin is an issue. I asked how long before it goes back to normal (my skin) and she said expect about a week – 10 days. There was a man I always saw the first several weeks of my treatment who was really red. He came back for a 10 day follow-up and his face was back to normal except for one small spot on his brow.

They started daily skin dressings on me today. My nurse will do on weekdays and I will need to do at home on weekends. Leave on for 10 min. She said mostly it just pulls the heat out.

Food cravings just won’t end. Looking forward to going back to Metro Diner this weekend. My daughter saw them on Diners, Drive-ins and dives and wants to go again and order what was featured.

 

Weekend 1/14, 1/15

Over the weekend my skin started oozing. If you try to wipe off the ooze skin comes with it. Yuck!

 

Mon 1/16

More of the same. Basically skin is a problem. Today is a holiday so no treatment today.

 

Tues 1/17

I was moved to twice daily skin dressings. My doctor also put me on antibiotics to prevent my open skin from getting.

 

Wed 1/18

Skin looking better. I think the dressings are a big help. Less red but still oozes. Today was my last day of IMRT.I peeled off those stickers and washed the marker off and now I have an extended shirt wardrobe. Which is great since I can’t have any necklines.

 Thurs 1/19

Skin still looking better and I’m wondering if it is the twice daily skin dressings or the antibiotics, or both.

LAST day of chemo. Yay!

 

Sat, Sun 1/21,1/22

I think the fatigue hit me this weekend. I slept real late Sat (up half the night though) and had trouble staying awake after being up 3-4 hours. Sunday I got up early but was fighting to stay up around mid afternoon.

 

Mon 1/23

Counting down to the final day

 

Tues 1/24

Got the all clear for discharge from the chemo doc. He said he was surprised with how well I’ve done. He told me how just this week he saw a patient of his, a woman with ACC, For her April will be 3 years with no evidence of any recurrence of cancer. She had proton and sees him every 3 months when she gets chest/head cts and chest xrays but if all is clear in April he will scale that back to less frequent scans/visits.

 

Thurs 1/26

Finally completed! Took my mask so I can scare my daughter

 

In the weeks post treatment: My skin healed up about 12-14 days after my last treatment to the point where you can’t tell I had radiation by looking at me. I never had problems with my mouth except once during treatment, but the week after treatment my tongue got a sore that lasted about two weeks. It made eating and talking painful. Sometimes the back of my throat would burn during my second week post

 

Thurs 3/1

Today I saw both doctors for my 30 day follow-up. My rad doc mostly just wanted to make sure my skin was healing ok. I have been told to keep moisturizing my skin since its’ so dry. Got my chemo doc questions answered. Mostly I was concerned about how my vein popped out and is sore. This occurred the week after my last treatment. He said he sees this often and it will resolve itself over time. Warm compresses may help speed that up.

 

Comparison of Proton vs IMRT in my experience

Here I am comparing side effects that I experienced with Proton treatment vs. side effects that Alayna experienced with IMRT. Except in the case of skin in which I could use my own collarbone compared to my face and neck to see the contrast.

  1. Mouth sores: both of us didn’t experience this until after treatment. Alayna’s went away quickly and would only come back if she ate something too spicy shortly after treatment. Mine lasted until 3-4 weeks post treatment when I finally got some magic mouthwash. I had been using magic mouthwash prescribed by my dentist prior to treatment, but it turned out to be something completely different than what my rad oncologist prescribed me when I needed a refill

  2. Fatigue: Alayna experienced this occasionally during treatment and shortly after treatment. I didn’t experience fatigue until after treatment and I went back to work the following week

  3. Hair loss at exit site: Alayna had this, I didn’t. With proton there is no exit site. The protons deposit at the target.

  4. Gag reflex: Alayna had this, I didn

  5. Taste changes: Alayna had quite a few taste changes but almost all of her taste is back to normal one month post treatment. The only taste that changed for me was coke in which case my doctor said that carbonated drinks will do that and that I should be avoiding them

  6. Saliva changes: I had no change in saliva. It always has seemed like I have plenty of saliva and my saliva never thickened. Alayna experienced “thick spit” which gave her some difficult time but that has returned to normal for her a couple of weeks post treatment

  7. Skin redness: The proton treated area is far more severe than photon treated area,