Radiation

dose of rads
Hi Judy,

I had stage IVa, scc, bot, hpv +, 1-lymph (3.1cm) node left side of neck. I’ve had surgery on my neck and tongue 35 radiation zaps and Erbitux (loading dose plus 7) to hopefully kill the beast.

I am reasonably intact mentally and physically. I have had many of the common side effects including dry mouth, little saliva, no taste, tiredness, etc…While I am a measurable distance from where I began; I am getting better at a noticeable rate.

After all I have learned from the H&N forum I believe (I hope) the path I chose will be deemed correct for years to come.

Good Luck!

Best,

Matt

IMRT
I had the same 35 radiation zaps and Erbitux as Matt, but no surgery.

my onc recently told me that in event of recurrence, rads would not be an option again. but right now I have to go with the faith that it's not coming back. mouth/throat radiation is tough, but I'm comfortable with the medical decisions made. not looking back, or too far ahead.
bless you.

MichelleLee71 said:

Just got done with 30
Just got done with 30 treatments of rad on my neck in August. I'm still having issues with little to no saliva. Finally getting some taste back but minimal. My neck burn has healed and my throat no longer hurts. I also had surgery on my inner cheek and a right neck dissection to remove lymph nodes. It's a tough process to go thru but it does get better day by day.

Second opinion
I think if I were you I'd get a second opinion. I also was dx with SCC laryngeal IV
I was treated with 8 erbitux (chemo-like treatment but antibody based) and 35 radiation treatments. I'm healing and feeling better from treatments each day it seems. My onc, ENT, and rad onc were very confident that I should have all the treatment that I had. While it's true that should the cancer come back I probably wouldn't be able to have radiation again in that area, it's also very certain that without rads I was at much greater risk.
Surgery wasn't an option for me if I wanted to preserve my voice so I did what was highly recommended and I'm glad I did.
Knowing what I know now, I would for sure get a second opinion if I were you. Rads and chemo are very standard procedure for H&N cancers. While not every patient gets both of those treatments, most get at least one of them.
I wish you luck in whatever you decide to do. Come back often as we all always here for you.
Take care,
Billie

phrannie51 said:

I agree with Billie on getting a second opinion....
erbitux might be something that you can have, since it isn't the same as Cisplatin or Carboplatin...There are a couple of folks on here who have gone thru treatment more than one time, getting rads a second time around. I'm sure you'll hear from them.

Myself, if they gave me the option of trying radiation, I'd take it...at least see if my body could handle it.

p

Treatment
I had Cancer on the base of my Tongue and had 3 lots of Chemotheraphy(Cisplatin) and 35 radiotheraphy treatments, found the Chemo harder than the Rads, first one was ok but got quite sick with the other two, last one lasted nearly 2 weeks, was very lucky that the rads did not burn my skin to much, my main problem was that I could not eat anything other than soup through not being able to use my tongue. had a lot of Mucus in my mouth for about 4 weeks after treatment finished this was very uncomfortable as I could not control and sometimes looked as though I was Frothing at the mouth, still getting a little mucus but not bothering me to much, was glad that I had a PEG fitted prior to treatment starting as this was really the only way I could get enough calories into my system, I lost about 35lbs in weight from when originally diagnosed(May 2012) to when I finished Treatment(Aug 2012), have now had PEG removed and I am eating fairly well and appear to be putting weight back on.

The effects I had from radiotheraphy were, lot of Mucus, tongue burning when eating anything spicy or acidic,general tiredness, very sore throat when swallowing but 4 months after finishing treatment things are gradulally getting back to normal still have very dry mouth but can eat most things except bread without burning sensation on tongue even though I have to have gravy or some sauce with food at the moment.

would I go through it again knowing what the treatment entails probably would but you need the support of people around you expecially when you get depressed due to not progressing fast enough or because you cannot eat your favourite foods. I mainly got depressed through watching other people eating dishes that I loved but could not manage myself but have decided that the only way to beat it is to force myself to eat them even if it means finishing long after others have eaten.

Had to cancel a cruise to the Mediteranean in August due to treatments but am going on one next week to the Canaries, this has helped me to set a goal of eating most things by the time I go, have found out that If I set a goal of things to do I do not get so depressed if I dont meet the aim that week I keep trying over the next few weeks but still set new goals each week.

squemous cancer
hi there sorry to hear you having cancer. i wish you the best. i am going into my fourth week of radiation and Erbitux some kind of chemo, they told me that I am not getting chemo. any way I am not having soars in my mouth at the top and under my tounge and on the sides of my mouth making it difficult to eat anything that is not soft. i am also having swollowing issues. it hurts. they gave me some mouth wash mix that numbs the mouth so i can eat with less pain but lately i just don't want to eat. i am 440 pounds as of tuesday at the chemo office where they weigh me. I have chemo (i'll call it that)once a week on monday and radiation every day five days a week. other than that i am fine. i am not in pain right now. only when i have to swallow. gotta do seven weeks of radiation and i don't know how much chemo.