Day 4 of RapidArc radiation for low grade parotid gland mucoepidermoid carcinoma...still very anxio

Moki · October 2014

Hello.

I am new to the board. So happy to have found it: I feel very alone even if my family is helping a lot. I feel they do not understand what is going on with me and all the talk and chit chat they do to try to distract me, make me angry. I am so sorry for them, but I cannot help myself being the positive and outgoing person that I was before cancer.

I am 45, with 3 young kids (1,5,10) and I am struggling putting the happy face and keep going like normal for the sake of my kids happiness.

Anyway, I found out I had parotid gland cancer in June. had 2 surgeries, the last one they removed all the tumor, but they had to sacrify the facial nerve; luckely no lymph nodes were affected. I had facial nerve grafting and static sling to help with the face symmetry. My surgeon told me the most painful part of the treatment was over, that I needed to put my mind on healing and recovery and that radiation was going to be a breeze.

Well, when I went for the radiology consult, they scared me with all the side effects talk; everytime I go there they keep reminding me about the horrible things will happen to me as I go through the treatment. It has been a shock that I was not expecting: I was recoverying, my energy and positive attitude came back and now BANG back to the black zone where I was when I was diagnosed.

Since my first radiation, I have nightmares, I am very nervous all the time, lost my appetite and often cry. Any suggestion on how to get through this period?: I still have 5 weeks to go with radiation and I do not know how I am going to handle it. I do not want to overload my family and kids with my emotions and want to "kick my ****" and get going like it was a normal day, but I found it very difficult.

Monica

phrannie51 · October 2014

Welcome Monica

to our little club....the one nobody wants to join. I'm glad you found us, too.....this place is full of smart, smart people and tons of support.

I don't know why the radiologist would bother to remind you each day you go in for rads, what the possible side effects are.....the key word here is "possible". The simple fact is there are some side effects that most people get.....dry mouth, loss of taste, and burning of the neck skin....those are the common ones (all of which heal to some degree or another after treatment is over).....these three things are the only side effects that are "probable"......Take good care of your neck with lotions and potions (I used Aloe and Calendula cream)....it will heal back up the quickest after treatment......Taste and saliva come back more slowly.....The thing is nobody gets all the side effects!

Take good care of your teeth now.....and in the future.....as radiation does do a number on them.

I'm sorry the Rad doc has scared you so badly you're having nightmares (my Rad guy was Pollyanna.....just the opposite....said I'd have a "bad sunburn", but said nothing else. I learned pretty much everything I was going to need to know on here. And guess what? I'm a little over two years out of treatment.....have 60% of my saliva back.....probably 60% of my taste back.....my neck is smooth as a baby's butt.....There is some rad damage.....little things like my neck is a little stiff, and one ear tingles.....but all minor and easy to live with.

So...get back to kicking ****.....and drop all the anxiety about radiation.....it's going to be ok......it is!!

p

PS....if the rad guy trys to tell you again about the side effects again, tell him to cork it......that your memory is in tact so you don't need the repeat......and you'd like to go into radiation daily with a POSITIVE mind set.

Moki · October 2014

phrannie51 said:
Welcome Monica
to our little club....the one nobody wants to join. I'm glad you found us, too.....this place is full of smart, smart people and tons of support.

I don't know why the radiologist would bother to remind you each day you go in for rads, what the possible side effects are.....the key word here is "possible". The simple fact is there are some side effects that most people get.....dry mouth, loss of taste, and burning of the neck skin....those are the common ones (all of which heal to some degree or another after treatment is over).....these three things are the only side effects that are "probable"......Take good care of your neck with lotions and potions (I used Aloe and Calendula cream)....it will heal back up the quickest after treatment......Taste and saliva come back more slowly.....The thing is nobody gets all the side effects!

Take good care of your teeth now.....and in the future.....as radiation does do a number on them.

I'm sorry the Rad doc has scared you so badly you're having nightmares (my Rad guy was Pollyanna.....just the opposite....said I'd have a "bad sunburn", but said nothing else. I learned pretty much everything I was going to need to know on here. And guess what? I'm a little over two years out of treatment.....have 60% of my saliva back.....probably 60% of my taste back.....my neck is smooth as a baby's butt.....There is some rad damage.....little things like my neck is a little stiff, and one ear tingles.....but all minor and easy to live with.

So...get back to kicking ****.....and drop all the anxiety about radiation.....it's going to be ok......it is!!

p

PS....if the rad guy trys to tell you again about the side effects again, tell him to cork it......that your memory is in tact so you don't need the repeat......and you'd like to go into radiation daily with a POSITIVE mind set.

Thank phrannie51

Thank you for your reply. Actually the nurses are the worst: the first one had to walk me throught the list because I have to sign that I understood the side effects, than it came the dentist, than it came the dietitian, than the radiologyst nurse that walk me through the list before they give me the treatment: do you have this? do you have that? etc....

The doctor told me once, but than he tried to help me saying: you will not get a lot of radiation on your neck and on the other side of your face, so you'll probably be OK, maybe feeling a bit tired and sunburned.

I will be going on my 5K walk today in the morning rather than the afternoon for some fresh air and hopefully try to get some piece of mind.

Monica

donfoo · October 2014

welcome to csn

Hi Moki,

Glad you found us here as this is a very caring and knowledgeable bunch of patients, caregivers, and survivors. I don't recollect many reporting having to go through a gaunlet of disclaimers and waivers for SCC treatment side effects. I'm sure we all signed away everything on those standard lines anyway.

There is a long list of POTENTIAL side effects but nobody gets them all. Most get a few common ones and a few other thrown in for variety and to keep us guessing. This is why there is no answer to what happens to me when I go through treatment. Each of us is unique so all you can do is be aware of what could happen and if you experience a side effect consult your team and check in here for suggestions.

It is common for folks to get freaked at some point on this journey. It is hella scary! Those who suffer anxiety while getting rad treatment often pop some meds to calm you down. Others take some meds to quell the anxiety whenever anxiety pangs appear. Have no reservation about taking any prescribed medications while in treatment. Take what helps you out.

csn is a wonderful place for the kind of things only those who have been through this understand so please come as often as you want.

Good luck.

Moki · October 2014

donfoo said:
welcome to csn
Hi Moki,

Glad you found us here as this is a very caring and knowledgeable bunch of patients, caregivers, and survivors. I don't recollect many reporting having to go through a gaunlet of disclaimers and waivers for SCC treatment side effects. I'm sure we all signed away everything on those standard lines anyway.

There is a long list of POTENTIAL side effects but nobody gets them all. Most get a few common ones and a few other thrown in for variety and to keep us guessing. This is why there is no answer to what happens to me when I go through treatment. Each of us is unique so all you can do is be aware of what could happen and if you experience a side effect consult your team and check in here for suggestions.

It is common for folks to get freaked at some point on this journey. It is hella scary! Those who suffer anxiety while getting rad treatment often pop some meds to calm you down. Others take some meds to quell the anxiety whenever anxiety pangs appear. Have no reservation about taking any prescribed medications while in treatment. Take what helps you out.

csn is a wonderful place for the kind of things only those who have been through this understand so please come as often as you want.

Good luck.

Thanks donfoo, I will look

Thanks donfoo, I will look into some omeopathic pill to come down my anxiety about the treatment (I am claustrophobic and the facemask is not my friend)

I am taking about 15 pills/day of supplement to help regenerating the good cells and enhance the radiation effects on bad ones.

KTeacher · October 2014

Moki said:
Thanks donfoo, I will look
Thanks donfoo, I will look into some omeopathic pill to come down my anxiety about the treatment (I am claustrophobic and the facemask is not my friend)

I am taking about 15 pills/day of supplement to help regenerating the good cells and enhance the radiation effects on bad ones.

Pills

Check with the radiologist before taking any vitamins. You will need to get your nutrition through food, juice, smoothies.

Moki · October 2014

KTeacher said:
Pills
Check with the radiologist before taking any vitamins. You will need to get your nutrition through food, juice, smoothies.

Thanks KTeacher
I've shown

Thanks KTeacher

I've shown the list to my oncologyst and he OK everything but vitamin A. Selenium, curcumin and all the other supplements have been proven to increase the effects of radio on the tumor cells while protecting the good cells.

tjheron · October 2014

Monica - Welcome to the

Monica - Welcome to the board! I'm new as well. I found out Sep 25th I had ACC and just finished day 7 of RapidArc. Looks like you and I are going through this pretty much together So far its been a breeze. I'm in and out in 10 min to continue my day. No side effects yet except mild nausea and feeling tired. I'm taking powdered glutamine three times a day to combat the sore throat....so far so good.

I was (and still am) worried about the side effects, but I'm determined to keep a positive attitude and maintain my daily routine as much as possible. Keep your mind and body busy on other tasks. Block out negative thoughts. I'm demonstrating to my 13 and 15 year olds that I will be fine.

Todd

debbiejeanne · October 2014

Monica, welcome and i'm sorry

Monica, welcome and i'm sorry you need to be here. we all understand your fear and the feeling of being alone even when family is there. they do not understand but we do as we have or are walking the same road as you. we will be here for you when you need to talk, ask questions, cry, vent, or whatever you feel at that moment. We are here to help you thru the rough times, celebrate the good times and talk you thru the nervous times. we will be on the sidelines encouraging you every step of the way. we are a family and you are now part of this family. yes, it is hard to wear a happy face all the time going thru this, believe me, we understand. its hard to do sometimes even after being done with tx so don't be hard on yourself. you will get thru this. as for getting thru the tx, ask your doc for some nerve pills to take before each tx. others have had to do that and it really helped. as for the side effects, you may get some but you will probably NOT get them all. they just tell you what can happen. for now, try not to worry about the side affects and concentrate on getting thru tx and then recovering. for now that is what's important. be sure to drink water so you can stay hydrated, that is crucial. if you can eat, eat! take each day one at a time. also, ask your rad technitians if they can play music for you to help you relax during tx. they are good people and always do what they can to help the pt get thru. remember we will be here for you and you WILL get thru this. keeping you and your family in my prayers.

God bless you,

dj

corleone · October 2014

What radiation dose?

It looks like you’ll get only 6 weeks of radiation; most folks here (including me) got 7 weeks. Of course, this might depend on the intensity, so you might get the same total amount. But I doubt. Because you are an earlier stage (I was III), you might receive around 60 Gy (Grays). I had 70. There is a huge difference in terms of side effects, as these are cumulative.

tommyodavey · October 2014

Moki said:
Thanks KTeacher
I've shown
Thanks KTeacher

I've shown the list to my oncologyst and he OK everything but vitamin A. Selenium, curcumin and all the other supplements have been proven to increase the effects of radio on the tumor cells while protecting the good cells.

MEC

Monica,

I too had Mucoepidermoid carcinoma with the primary tumor being on the base of my tongue. It sounds like you were diagnosed early enough to avoid lymph node infection. Mine went to my right neck lymph node and swelled it up. That's how they found the tumor on my tongue.

Tell me more about your DX. Due to the type of cancer and clear margins in surgery, I was able to get a lower dose of radiation rather than the full on course. It was only reduced by a little but that made a big difference later on. But everyone reacts different to rads. My father in law had SCC in his mouth and had the full rads + a little more because he took it so well. The only bad effect he had (other than sunburn) was the loss of taste for two years, but it came back.

If you want more information, message me and I'll give you my email address.

Tom

Moki · October 2014

corleone said:
What radiation dose?
It looks like you’ll get only 6 weeks of radiation; most folks here (including me) got 7 weeks. Of course, this might depend on the intensity, so you might get the same total amount. But I doubt. Because you are an earlier stage (I was III), you might receive around 60 Gy (Grays). I had 70. There is a huge difference in terms of side effects, as these are cumulative.

I had the tumor for at least

I had the tumor for at least 3 years, but it was never found. Luckely, because it was low grade, it did grow slow and it was localized (unfortunately it was localized on my facial nerve). I have 50 Gy for 30 days. To me it seems a lot, but you are mentioning 60 to 70 Gy. Is there a big difference? Sorry, I am still a learner.

Moki · October 2014

tommyodavey said:
MEC
Monica,

I too had Mucoepidermoid carcinoma with the primary tumor being on the base of my tongue. It sounds like you were diagnosed early enough to avoid lymph node infection. Mine went to my right neck lymph node and swelled it up. That's how they found the tumor on my tongue.

Tell me more about your DX. Due to the type of cancer and clear margins in surgery, I was able to get a lower dose of radiation rather than the full on course. It was only reduced by a little but that made a big difference later on. But everyone reacts different to rads. My father in law had SCC in his mouth and had the full rads + a little more because he took it so well. The only bad effect he had (other than sunburn) was the loss of taste for two years, but it came back.

If you want more information, message me and I'll give you my email address.

Tom

Hello Tommy
my tumor was

Hello Tommy

my tumor was there since at least 2011, but it was discovered in June this year. A lot of biopsies, MRI and CT scan never show it, it was a big suprise when I took out the parotid gland for what we thought was a cronic inflammation. It was a slow growing, low malignancy grade so I have been lucky that it did not spread in limph nodes. I am so happy I went to a specialist in Los Angeles to get the big surgery: after 7 hours operation with 2 surgeons and 30+ biopsies during the operation they were able to get all negative margin wihtout needing neck dissection.

I have 30 days of 50Gy daily radiation around the parotid gland bedding and beyond the ear. They want to make sure no tumoral cells are left behind especially being so close to the brain. The majority of my neck will not have radiation, just the part below the ear and the jaw line. I really hope the location will not make it too bad for mucocitis/sore throat. I will need to watch for fluid in the ear and difficulty in opening and cloing the jaw as I may develop scaring in the jaw bone.

How much dose did you get?

Monica

corleone · October 2014

Moki said:
I had the tumor for at least
I had the tumor for at least 3 years, but it was never found. Luckely, because it was low grade, it did grow slow and it was localized (unfortunately it was localized on my facial nerve). I have 50 Gy for 30 days. To me it seems a lot, but you are mentioning 60 to 70 Gy. Is there a big difference? Sorry, I am still a learner.

It is a big difference, but I

It is a big difference, but I can’t quantify that. Suffice to say that by the time I had 50 Gys (assuming that I received equal amounts weekly – this might be false though) I was finishing week 5. Only then the side effects started to pick up and become really significant.

I think you’ll get some of the issues most of us have, but lower intensity; dry mouth, taste off (or lack thereof rather), burnt skin (didn’t bother me that much, but others did). What’s more important, the longer term (years down the road) side effects will be much less.

Anonymous7/6/2023 · October 2014

This place is full of love

This place is full of love and care Moki. It does help. This isn't an easy road we tread, at all, almost mountaineering at times, but try to remember, you will heal, you will get through this and come out the other side. You will heal x x x x

tommyodavey · October 2014

Moki said:
Hello Tommy
my tumor was
Hello Tommy

my tumor was there since at least 2011, but it was discovered in June this year. A lot of biopsies, MRI and CT scan never show it, it was a big suprise when I took out the parotid gland for what we thought was a cronic inflammation. It was a slow growing, low malignancy grade so I have been lucky that it did not spread in limph nodes. I am so happy I went to a specialist in Los Angeles to get the big surgery: after 7 hours operation with 2 surgeons and 30+ biopsies during the operation they were able to get all negative margin wihtout needing neck dissection.

I have 30 days of 50Gy daily radiation around the parotid gland bedding and beyond the ear. They want to make sure no tumoral cells are left behind especially being so close to the brain. The majority of my neck will not have radiation, just the part below the ear and the jaw line. I really hope the location will not make it too bad for mucocitis/sore throat. I will need to watch for fluid in the ear and difficulty in opening and cloing the jaw as I may develop scaring in the jaw bone.

How much dose did you get?

Monica

Low Dose

Monica,

I can't quite remember the numbers but I think it was 5,000 less than normal. What is good for you is that they will avoid your other parotid gland so you'll still have saliva. They removed my right one with the neck disecction and moved my left gland closer to my chin so as to avoid getting hit with rads. My mask was made with that in mind. Lucky for me I still have one gland left and it works overtime.

MEC is a fairly rare cancer as I'm sure they told you. Mine being BOT really surprised them as it normally hits the major salivary gland or close to it. He removed my right for two reasons: 1) the radiation would have destroyed it anyway. 2) If my cancer came back, that is where it would most likely hit. What is good for both of us is the clear margins in surgery. The chance of it coming back is very very low. It can, but it's doubtful. Me? I don't worry about it at all. Just had a PET scan two weeks ago and have heard nothing. No news is good news as they say.

Happy Healing to Ya,

Tom

Moki · October 2014

Estelle_H said:
This place is full of love
This place is full of love and care Moki. It does help. This isn't an easy road we tread, at all, almost mountaineering at times, but try to remember, you will heal, you will get through this and come out the other side. You will heal x x x x

Thanks Estelle
yes, I feel

Thanks Estelle

yes, I feel the love and the true caring. Glad I joined.

Slimsally · November 2014

Moki said:
Hello Tommy
my tumor was
Hello Tommy

my tumor was there since at least 2011, but it was discovered in June this year. A lot of biopsies, MRI and CT scan never show it, it was a big suprise when I took out the parotid gland for what we thought was a cronic inflammation. It was a slow growing, low malignancy grade so I have been lucky that it did not spread in limph nodes. I am so happy I went to a specialist in Los Angeles to get the big surgery: after 7 hours operation with 2 surgeons and 30+ biopsies during the operation they were able to get all negative margin wihtout needing neck dissection.

I have 30 days of 50Gy daily radiation around the parotid gland bedding and beyond the ear. They want to make sure no tumoral cells are left behind especially being so close to the brain. The majority of my neck will not have radiation, just the part below the ear and the jaw line. I really hope the location will not make it too bad for mucocitis/sore throat. I will need to watch for fluid in the ear and difficulty in opening and cloing the jaw as I may develop scaring in the jaw bone.

How much dose did you get?

Monica

Same radiation

Hello I start my radiotherapy on the 17 th of November 6 weeks also how is it going very worried about the side effects

Slimsally · November 2014

tjheron said:
Monica - Welcome to the
Monica - Welcome to the board! I'm new as well. I found out Sep 25th I had ACC and just finished day 7 of RapidArc. Looks like you and I are going through this pretty much together So far its been a breeze. I'm in and out in 10 min to continue my day. No side effects yet except mild nausea and feeling tired. I'm taking powdered glutamine three times a day to combat the sore throat....so far so good.

I was (and still am) worried about the side effects, but I'm determined to keep a positive attitude and maintain my daily routine as much as possible. Keep your mind and body busy on other tasks. Block out negative thoughts. I'm demonstrating to my 13 and 15 year olds that I will be fine.

Todd

Same have acc

Hello how's the radiotherapy going have you it in the paritod gland ?

Moki · November 2014

Slimsally said:
Same have acc
Hello how's the radiotherapy going have you it in the paritod gland ?

Hello Slimsally
Yes, my tumor

Hello Slimsally

Yes, my tumor was in the parotid gland: it was removed on September 3, along with the facial nerve that was affected and got a nerve graft and static sling put in. I am praying for quick recovery even if the docs said it will take at least 6 months before I could have movement on that size of the face. Now I look like a lady which had A LOT of Botox, LOL.

I am starting week 3. Week 1 was bad: fatigue, nausea, headache, my week-end was the worse with chills and vomit; I was getting worried about the weeks to come. Week 2 was much better: my energy came back to "almost normal", I took Zofran for few days and now no more nausea, no more headache; I have a slight inflammation to my toungue and throat that so far I am controlling with L-Glutamine (1 scoop in a glass of water, 3 times/day). I am more hungry than usual so I am eating....a lot: I gained 3 lbs since week 1! Exercising has been my safer: 10K of brisk walk every day, Pyio 2 times/week, squats and planks evety day, 5K running 2 times/week. At the beginning of my exercise routine I feel weak, but as the oxygen comes in I feel better and better. At the end of my exercise routine I feel myself again.

I am concerned about the weeks to come because many people started to get bad in week 3 and get worse toward the end, but I am trying to take 1 day at the time and enjoying the good days I am having without thinking too much about tomorrow.

Did you start your radiation treatment? If yes, how's going?

Moki · November 2014

Slimsally said:
Same radiation
Hello I start my radiotherapy on the 17 th of November 6 weeks also how is it going very worried about the side effects

Hello. I just saw this email

Hello. I just saw this email about the starting day. I know it is difficult, but try not to think too much about your radiation. I think I researched too much and I was so scared that my week 1 was bad because I was too nervous and my body was in a rejection mode. As I relaxed a bit, I felt better. I am still worried, but I try to manage my anxiety with exercising and living a normal life. Get distracted, meditate, breathing exercise, whatever help you to relax, do it. I used to put myself last in the family, but now I am taking the time I need for myself. My kids and husband got adjusted pretty quickly to the new me and they love me as much as the loved me before, if not more.

Let me know if you need anything, I am here to help.

Day 4 of RapidArc radiation for low grade parotid gland mucoepidermoid carcinoma...still very anxio

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