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janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

Ron had his first rad and chemo today.

4 hours of chemo, wow. He is tired and had a little nausea but started his meds immediately. a little dizzy, which is probably due to all the hydration and low potassium.

he is eating and drinking, using his aquafor on his neck. using his l=glutamine.

He plans on going to work tomorrow. Not sure how long he will keep that up. I think he will get fatigued quickly.

I do appreciate all the info everyone on here has given me to be prepared ahead of time.

Thankyou,

Janet

 

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hwt's picture
hwt
Posts: 1991
Joined: Jun 2012

My radiologist gave me Aquaphor for my lips and something called Vanicream for my neck. I've heard others complain that the Auquphor is too heavy and sticky for the neck. Personally, I did not have any issues with my neck until I finished radiation. Just as I finished, my neck and lower face turned dark brown and peeled. It never oozed, never burned, never broke open, and never hurt. I know others have not been as fortunate. Hoping Ron dodges the bullet on that one.

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thankyou, will look into that.

the aquafor is greasy.

hoping we dont have issues , any signs of any , I will be asking for silvadene

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi Janet,

My team recommended Special Care Cream. I used it starting two weeks before treatment and throughout. I had some burn and peel at the end but it helped heal within a week. I didn't need anything more.

Best wishes for a smooth ride.

Positive thoughts and prayers.

"T"

phrannie51's picture
phrannie51
Posts: 3822
Joined: Mar 2012

Calendula cream instead of the aquafor, because it isn't so darn greasy.....I got it at the health food store, and bought the type for babies butts.  It's super healing.  I'd put Aloe 99 on first, let it dry, and then put on the Calendula.

I have to say tho.....when my mouth was taking a beating from 5FU, I used a whole jar of aquafor on my lips....Laughing 

p

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

Thanks T and Phrannie

will be looking into both of those creams and aloe.

He is exhausted, never seen him this tired.

He seems to be doing well otherwise.

I just sat myself. it has been a long day. and many more to come.

thankyou for your support and ideas

god bless

janet

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

My first day of chemo was double that... But concurrent chemo/rads was about the same...

I never liked the Aquaphor, warm showers worked well for me.

Glad he mad it through day one of GroundHogs Day....like the movie.. His next several weeks are going to be the same as for rads...

Same thing day ,after day, after day, after day...

Best ~ John

donfoo's picture
donfoo
Posts: 1316
Joined: Dec 2012

Hi,

since rads and chemo just starting things to watch are the fatigue, chemo fog/brain, nausea, vomit, and mucositis starting up. The first two weeks these are focused on these; things like radiation burns come later, at least for me. and for that i did use aquaphor and it was fine with me. greasy a bit yeah but all things considered not enough to be a bother to me. Silvadene was prescribed by my RO to be used only once the burn wounds started to weep. Never got to that stage so I tried some just to see what it would do. Not much different as the burn wounds never did seep or open up, never gettting rose than very red and tender. Acquaphor worked fine for that as well as the dark skin burnt area in general; I put a light coating over the entire buringin area.

Stay on top of the anti nausea and vomit meds. As for more if still under stress from those. I did not have any nausea or vomit symptoms so beyond all the stanard stuff I was prescribed, it all worked good. I took stuff like compazine, decadron, reglan and zofran. My MO feels better to med up for all generally know side effects early rather than try to play catch up later. I thought that was a pile of pills but I never got sick.

Hang in there. don

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

ron went to work then ran over for his radiation treatment.

i checked in on him, he is very tired he said. has so much to do at work and doesnt want to

give in yet.

i will have to go to his work and drag him out I bet come next week.

but at least he is eating and drinking.

I can tell this is going to be brutal

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

"Ron went to work then ran over for his radiation treatment..."

LOL, I usually felt ran over after rads.....

JG

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thankyou for the laugh, I needed it.

he had a very tough time today and came home early.

he went in at 5am then "ran" to radiation at 9 which is 45 minute drive one way.

he got back to work and is sooo tired. he said it was time to go when he woke himself snoring face down on his desk in his office.

I am wondering if he will cave by end of week and just go out on disability.

he has a difficult time relinquishing work to others.

 

fishmanpa's picture
fishmanpa
Posts: 1127
Joined: Jan 2013

Hi Janet,

I didn't feel a thing the first 5 or so rad treatments. I was a little tired after the 1st chemo treatment but fine after a few days. If he's really tired after 1 treatment, then yes, it may be a rough ride. On the other hand, his fatigue could be stress related too.

Positive thoughts and prayers

"T"

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

T

he is eating and drinking but very tired.

he got rads and chemo same day to start. so am wondering if that is why he is spent. not sure if its just for the start of the week because of the chemo or what.

just going to let him sleep for now.

thankyou

CivilMatt's picture
CivilMatt
Posts: 3069
Joined: May 2012

Janet,

It sounds like a robust start for Ron, ah I remember it well, not the going back to work part, but crossing the threshold into the H&N world.

Stay upbeat, hydrated and nourished and look out “sharp curves ahead”.

Best of luck,

Matt

JerryNG
Posts: 6
Joined: Apr 2013

Looks like Ron and I are on same timeframe, I started yesterday with rad, then 8 hours of chemo and all the "fillers". Long day, tired. No nausea but definitely awoke with taste changes starting. Water tasted metallic. 

As for lotions, someone recommended Miaderm to me.  Says that it was specifically developed for radiaion relief by radiation oncologists. I purchased on Amazon, it was expensive, about $25 for just a 4 oz tube. Used last nite, not greasy at all. But at this point too early to guage it's effectiveness. 

 

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

thanks matt, need bumpers for sure.

 

jerry, are you doing cistplatin and if so are you doing it weekly or 3 x's during rads?

he feels funny he says, not so much nausea, more wobbly he says.

I know his potassium was low and most of his labs were on the low level range. and I know as much fluids they pushed thru that they probably diluted his cells.

keep me posted on how your treatments go and about that cream.

good luck and god bless,

janet

hwt's picture
hwt
Posts: 1991
Joined: Jun 2012

I can only say that I got so tired mid-tx that I never gave work a 2nd thought. I slept 20 hours a day and I mean really slept. No tossing and turning just sound sleep...maybe the pain meds. I would have slept 24 straight but forced myself to get up for tx, meds, meals and made myself take a brief walk every day to blow the stink off.  

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

well, after a nap he did feel better, no nausea just really tired.

I think I found the culprit. the anti nausea drug is compazine, dont drive or operate machinery, causes drowsiness.

got a good laugh, he thinks i am trying to drug him.

will get a good nights sleep and try again tomorrow and hope for better results now that his nausea is better, the emend in the IV is supposed to last

in his system for 3 days , they said thats when ppl get the nausea?

anyone have that problem, delayed nausea, days later?

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

was worried all night, but when ron got up at 445am to get going he was peppy and back to his normal self.

no dizzyness or nausea. I feel so much better.

hoping the rest of the week goes better.

I really feel that yesterdays fatigue was mostly from the anti nausea med.

now to go amazon scanning for creams you all have advised on.

thankyou so much for being there.

God Bless my Angels on here

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Well that ain't right..., LOL

He'll migrate with the rest of us to Abi-Normal before it's all over...

Also, they usually use drugs like benedyl etc to keep down reactions to chemo, could be something lke that was hanging in his system... I know when I had chemo they also added steroids and such..

I worked from home during my treatment (computer database planning models)..., any ways... I'd be up to 4am working to wired to sleep, but the next day I'd sleep most of the day and half the night..., LOL it's a circle.

JG

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

yes, he had steroids and antinausea meds prior to chemo

lol, ron has never been "normal"

He works as a manager at a nuke plant, he will use his computer at home for some of the work when he goes out on

disability, but mice play when the cat is away, so to say. he is worried things wont get done.

I told hime about the benedryl this morning, so he will use that instead of the prescription meds.

He never takes any meds , so he was really sensitive to anything he took. will have to half does him.

Abi-normal. new term for him. but fits.

He has been very receptive to preventative stuff and hope it keeps up.

thankyou, also love your sense of humor on these boards, really keeps us newbies going.

God Bless ,

janet

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

I work for an electric utility as well.....

Small in comparison I'm sure, but we are in a Power Pool (FMPP) with other local utilities.

I worked at the plant for 12 years, been downtown in the main admin building for about the same now... It's a light shade of coral or pink..., so my buds at the plant fondly refer to me working in "The Pink Palace", LOL...

John

CherieLW's picture
CherieLW
Posts: 438
Joined: May 2013

Janet,

Glad to hear your husband started to feel somewhat better after treatment. Give him something to keep busy!

Not sure you saw where others mentioned it, but I started a calendar to help count down my dad's treatments.  I gave one to mom and dad, as well as gave one to my older sister. It seems to be somewhat helpful seeing the end in sight.  I printed out a June and July calender, highlighted in pink his chemo days and highlighted in yellow days for rads. Then as the days pass I put a huge black "X" over the day.

It's scary and hard to see someone you love go through this. In my case it is my dad, but I have seen the workings of cancer in the past.  I always try to think about how much more they know nowadays about cancer and treatments. I thank God that my dad was not diagnosed ten years ago because I have much more faith in docs now than ever before.

Hoping that Ron hangs in there with these trtments and knows he is not alone with his battle ever! Continue getting on here and reading inputs.  That is what helped me the first whole week through my dads treatments.  Getting info and advice...

Prayers and thinking of you both!

Cherie

janetluvsron's picture
janetluvsron
Posts: 108
Joined: May 2013

he came home early today, very exhausted. so guess it didnt have any thing to do with the compazine.

He is thnking of going out on disabilty next week.

he drives 35+ minutes one way to work, then 45 from there for rads. the drive is exhausting him.

 

John

the pink palace, I wouldnt think of a plant when I hear that name! lol

Cherie,

we have a huge desk blotter calendar I got him and we have everything on it and every day he marks a big X when he is done. Its going to get hard I am afraid

since he is already getting hit so early with only 3 rads and 1 chemo done. he has 8 more chemos and 36 more rads to go.

At least no nausea

will keep everyone posted.

thankyou and lets all keep each other in our prayers

and keep the humor going, its makes the day easier to laugh at something.

God Bless

janet

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

That's the admin building downtown, (where I now work)... I did work at the plant about 5 miles away for several years... One of the main units is a 365MW Coal Plant, the other big unit is a 375MW Combined Cycle Natural Gas Turbine..., and sevarl other smaller units. 

We actually have three facilities around 1000MW of generation all together.

You can see the admin building across a big lake from the plant... When the sun hits it, it looks like a big pink palace, LOL. Much different environment than the coal dust and flyash at the plant...

JG

 

            

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