treatments postponed till August 4.. i think im ready :)

Goyca

Hello guys,

yesterday I had my first appointment with the radio oncologist. the mapping and simulation meeting in next Wednesday.  and the first session is July 28. I'm gona be having 28 sessions of "MIRT" I'm not sure if I spelled it right, its the localized radio.

the area treated will be my sinus area. That is around my left eye. They guaranteed no risk on the eye.

 

They told,me the below side effects:

- skin burn on the treated area

- blocked nose with some secretions (maybe some blood mucus) 

- hair loss in a certain spot of my head and hair loss of my left eyebrow

- mucus on my eyelashes because the eye will not be able to make tears. They will give me drops for this issue.

-fatigue and feeling sleepy

mainly that's all what they mentioned about side effects.

 

 

anyone here had rads in the same area, sinuses, ??!! That is around the eye and on side of the nose. If yes please share with me ur experience especially the side effects.  

 

I'm still strong. Didn't decide yet about going back to work. But I hope this phase won't destroy me emotionally.

 

have a nice day/night everyone thanks for reading.

CivilMatt

get ready

Goyca,

The further you travel this road the more you drift from normalcy.  Not to fear, your emotional side will only get stronger (mine did).

Be tough and get rid of cancer!

Matt

Guzzle

CivilMatt said:

get ready

Goyca,

The further you travel this road the more you drift from normalcy.  Not to fear, your emotional side will only get stronger (mine did).

Be tough and get rid of cancer!

Matt

Good Luck

Goyca, good luck mate, Gary

bjohn

Goyca

Hello

 

 My husband also had IMRT to this area for a higher stage of olfactory neuroblastoma.  I think they covered all the side effects. His main complaints are still the tearing of the eyes and constant dryness because of the extensive surgery and radiation. He had everything done endoscopically. The crustiness has gotton much better everytime he has seen the ENT which is every 6 months now.

Goyca

matt and gary

Thank u guys for ur constant support

Goyca

bJohn ... glad u read my post

i hope ur husband stays healthy and strong. I have low grade olfactory Neuroblastoma. I appreciate u sharing some info with me. Was the treatment painful? And could ur husband go to work during treatment ?

KTeacher

Not fun

Not fun but doable.  You might look at the Superthread for things that you might want to have handy before radiation starts.  Hair loss is usually in the area of radiation and exit site.  I lost about 1 inch in the back of my head but it grew back.  Eyebrows have been slower to return.  You might check with your team and see if you can use a sinus rinse.  You will be tired, your taste may go, you might get sores in your mouth.  Keep an eye on the skin burn, you need to go to radiation with clean skin, no cream, but you will want to cream up after, like as soon as you get home.  Techs will probably give you some cream, I liked Aquaphor, it is greasy but worked for me.  Phrannie used Calendula cream (in baby section for diaper area).  If the burn gets bad there is a prescription that you can ask for, Silvadine, works miracles.  Eat what you want now, you will probably loose weight during treatment.  Ask questions as you go along, new things arise daily.  We are here to help.

Goyca

kteacher ... thanks

I'll check for the creams u told me about.

Thanks for all the info

 

Goyca.

debbiejeanne

goyca, i'm glad the plan is

goyca, i'm glad the plan is finally in place and you know what to expect.  you will be so busy with appointments that the time will go quickly and you will be ringing the bell before you know it.  we will be on the sidelines cheering you on!  if you listen closely, you will hear us yelling...lol.  praying for smooth sailing thru tx and look forward to doing the happy dance when you are done!!

God bless you,

dj

Goyca

Thanks Debbie I definitely

Thanks Debbie I definitely need the cheering.

 

sending u some hugs,

Goyca.

Hondo

Hi Goyca

I am NPC so all my treatment was in the sinus area like anything it has its problems but you will like all the rest of us make it through just keep focus and keep positive. I worked through all my treatment but the people I work for understood my needs and sometimes I would come in and do nothing but sleep on my desk and someone would wake me up when it was time to go home. It kept my mind active and gave me something to look forward to rather than going home to think about my problems.

Just remember we are all here for you anytime and will cheer you through the finish line.

Tim Hondo    

wmc

You'll be busy

It is a bumpy road, and you will so busy every day, the days will be long but the weeks will go by faster then you think. Stay positive and not only keep us updated, if you have some bad days just come and vent a little, it helps and we understand, and have as well. Will keep you in our prayers.

Bill

bjohn

Goyca said:

bJohn ... glad u read my post

i hope ur husband stays healthy and strong. I have low grade olfactory Neuroblastoma. I appreciate u sharing some info with me. Was the treatment painful? And could ur husband go to work during treatment ?

Goyca

Hello

 

My husband was able to do a little work from home. Fatique was the bigest factor. the treatments are painless but the mouth can get sore. Keeping the skin lubricated when at home is very important. I don't think he lost any hair from the rads and he had some of it to his skull area also. Hope all goes well and very quickly!

Goyca

bjohn, Hondo, and Bill

thank u guys for ur support... I'll sure keep u updated.

concerning work I decided not to go, I will extend my sick leave if they accepted.  

 

God bless,

GOyca.

jackflash22

Hair loss

you mentioned hair loss due to rads. You only lose the hair in the line of the rads. I lost the back hair at the base line to the bottom of the ear. My hair is cut in a shotrt bob so it covered it, I didn't think it would ever grow back but one day running my hand under my hair I could feel fluff growing now it's grown back dark and curly, that might sound fine but I'm silver haired and straight. I'm two toned at the back straight silver with almost black curls underneath. My family joke I should have had my head shaved then I'd have a dark and curly hairstyle. Not that I want dark and curly it's taken me many years to grow silver hair. Funny thing is for years I'd dye my hair blonde and when I stopped dying it, it was silver and didn't look any different to when I dyed it. 

Meegs

Hi Goyca

I have had the same cancer and treatment, and the radiation to sinus area went well! The only other issues was that my nose did get swollen and red in the last few weeks of treatment and I lost sense of taste as well, that doesn't always happen though

It does get better, but it's so hard at the time... Let any friends and family support you as it definitely makes things easier to get through.

let me know if you have any questions or anything

lornal

jackflash22 said:

Hair loss

you mentioned hair loss due to rads. You only lose the hair in the line of the rads. I lost the back hair at the base line to the bottom of the ear. My hair is cut in a shotrt bob so it covered it, I didn't think it would ever grow back but one day running my hand under my hair I could feel fluff growing now it's grown back dark and curly, that might sound fine but I'm silver haired and straight. I'm two toned at the back straight silver with almost black curls underneath. My family joke I should have had my head shaved then I'd have a dark and curly hairstyle. Not that I want dark and curly it's taken me many years to grow silver hair. Funny thing is for years I'd dye my hair blonde and when I stopped dying it, it was silver and didn't look any different to when I dyed it. 

Hair

Hey JF, I had my hair come back after rads curly also.  Have never had curly hair before.  That was in 2007.

Now, after this new cancer - which I didn't have rads or chemo - I have curly hair again. I usually keep it short, but I'm enjoying the curls too much.  However, this last cancer did a whooper to my body - and I have so much more gray than I did before. 

Lorna

2007 & 2014

Goyca

jackflach & lornel

I have curly hair already ) so I guess that's good if it comes back curly. And once its all over I'm planning to dye my hair for the first time maybe red or something like that

 

 

Goyca

Meegs ,thank u

For sharing my experience . I'll sure keep u updated during the treatment.

 

Bless u

Goyca.

Goyca

morning or evening?

guys which is better taking the rad sessions in the mornings or evenings ??

 

thanks.

Goyca.

KTeacher

Goyca said:

morning or evening?

guys which is better taking the rad sessions in the mornings or evenings ??

 

thanks.

Goyca.

I vote for morning

I've done this stuff 4 times, always in the a.m.  Cyberknife was at 11:45 a.m.  By the time I got home I was ready to nap, I don't know if I would be able to make it to late radiation treatments.  Oh, I did have one late radiation because chemo took so long when I had a substitute nurse.  Just my opinion.