Starting radiation in three weeks.

Blossom129

I had TORS and a double dissection two weeks ago.  I will be starting radiation in about 3 weeks.  Does anyone have suggestions for what I can do lessen the side effects.  I will be getting IMRT to only one side of my neck for 33 treatment.  They said I will be receiving 65 grays in the area of the two lymph nodes that were effected and 55 grays in the surrounding area.  Any suggestions would be greatly appreciated.  Blossom

KTeacher

Welcome

This is a great group with very supportive people.  I suggest that you check out the Superthread at the top of the topics.  Tons of information for going through treatment.  Not fun, but doable.  Stick around, we'll help you out and answer any questions that you may have.

debbiejeanne

blossom, you don't have to

blossom, you don't have to have chemo!  that's great.  there is a lot of info in the superthread to help you thru rads.  we will also be here when you have questions.  so glad the dissection is behind you.  to me, that was worse than rads but everyone is different.  praying for you to sail thru tx with very few bumps.  take care and let us know how you're doing.

God bless you,

dj

hwt

debbiejeanne said:

blossom, you don't have to

blossom, you don't have to have chemo!  that's great.  there is a lot of info in the superthread to help you thru rads.  we will also be here when you have questions.  so glad the dissection is behind you.  to me, that was worse than rads but everyone is different.  praying for you to sail thru tx with very few bumps.  take care and let us know how you're doing.

God bless you,

dj

Blossom

My suggestion is to take each side effect as it comes and deal with it then. Some you will get, others you will not get. They all come in varying degrees. I suggest Auquaphor on your lips (OTC @ Walgreens) and taping some tongue depressors together to keep your mouth streched and to help prevent trismus. Just strecth to the point of feeling but not to point of being painful.

Prayers for an easy journey.

Candi

CivilMatt

WELCOME

B129,

Welcome to the H&N forum.

For me, easily the best advice (and simplest) I received here was to drink lots of water and swallow often.  Also, there is a list of “must haves” in  the Superthread, which is helpful.  You never want to go into a weekend shy of something important.

Good luck, smooth ride,

Matt

Guzzle

CivilMatt said:

WELCOME

B129,

Welcome to the H&N forum.

For me, easily the best advice (and simplest) I received here was to drink lots of water and swallow often.  Also, there is a list of “must haves” in  the Superthread, which is helpful.  You never want to go into a weekend shy of something important.

Good luck, smooth ride,

Matt

5 weeks in

Blossom, keep drinking, eating, active, use aqueous cream. Lots of good advice from good people here.Good Luck. G.

phrannie51

It's hard to decide what to get

before rads start, because chances are you won't get all the side effects.  A week before I started, I bought Aquafor (at Walmart) for my neck....but ended up hating that and used Calendula Cream for babies (health food store) and Aloe 99.  I also bought a case of Ensure....didn't use it until about 3 weeks into treatment, sent for some Xylotal gel....never used that.   Ah...but I also bought a recliner (my bed away from bed)....and I'm still sitting in it .  Keep the list from the Super Thread handy, as you go along.....and DO ask questions.....we're always here to answer.

p

hoppere

Rad Support

Hi Blossom!

I'm almost six weeks out from chemo and radiation. The best advice I can offer you is to use vitamin E oil on your skin where the radiation is focusing. I had the exact same Rads that you are getting and for the same amount of time. My doctors were shocked at how good my skin was able to hold up. The vitamin E is probably going to come in handy most toward the end of your treatment and for the first few weeks after as it will aid in the healing process.

Please talk to your doctor in advance about having some of the prescriptions in advance so that you don't run into trouble on the weekend when you can't get anything. The Mary's Magic Mouthwash and Philadelphia formulas are helpful for the mouth sores that come around mid-treatment.

Most importantly, stay positive! Focus on the countdown and try to relax. This too shall pass!

Yours,
Beth

donfoo

Welcome to CSN

Hi Blossom,

Welcome to the forum. Lots of great support and experience. Rads are going to be a tough journey. There are three things to stay on top of every day and you will get through.

NUTRITION - HYDRATION - PAIN MANAGEMENT

Minmize losing weight, minimize getting dehydrated, minimize pain. It much easier said than done but really that is what it boils down to.

Bunnymom

phrannie51 said:

It's hard to decide what to get

before rads start, because chances are you won't get all the side effects.  A week before I started, I bought Aquafor (at Walmart) for my neck....but ended up hating that and used Calendula Cream for babies (health food store) and Aloe 99.  I also bought a case of Ensure....didn't use it until about 3 weeks into treatment, sent for some Xylotal gel....never used that.   Ah...but I also bought a recliner (my bed away from bed)....and I'm still sitting in it .  Keep the list from the Super Thread handy, as you go along.....and DO ask questions.....we're always here to answer.

p

Calendula cream

 

 

 

Did you use the Calendula cream before you started rads? How did that work for you?

bunnymom

Steve5

Sorry you are here

Do you have a team that works with you on nutrition, speech, cancer nurse etc... They should be helping you prepare for the upcoming treatments and the possible need for food intake and liquid intake as well as exercises you might need in swallowing and opening your mouth.  I had IMRT, 35 treatments and 70 Gy total.  Tonsil and 2 nodes.  Eating may become an issue with loss of taste, you may need to go to Ensure or some other liquid diet along with drinking and hydrating constantly to continue swallowing and gettting enough fluids so you don't dehydrate.  I had 7 chemo treatments as well, once per week.  The last two weeks can get rough and the last one rougher.  Some have it better, some worse than the next person, it varies.  You take it as it comes if it does.  At the end you come out as they say, the new normal.

Thinking of you

Steve

Blossom129

Thank you

i really appreciate all the suggestions.  Hope I can handle this as well as all of you did.  I'll keep you posted.

Mikemetz

Blossom129 said:

Thank you

i really appreciate all the suggestions.  Hope I can handle this as well as all of you did.  I'll keep you posted.

ORN risks

Always sad to see a newbie join us, but you won't a better place for getting advice and support.  You may want to ask the rads onco how close your tumor is to any bone tissue and if that is being considered in the 'targeting' plan.  The closer it is to bone tissue, the greater risk there is for osteoradionecrosis (ORN, "dead bone from radiation").  ORN will develop, or not--there is no predicable pattern--but you need to know how much risk you have for it.

Best of success with your upcoming treatments, and visit us often here.

 

mike