1 down and 38 more to go

janetluvsron
janetluvsron Member Posts: 116
in Head and Neck Cancer #1

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

 

 1 down, 38 more

«1

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    #2
    The countdown is on!

    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
    janetluvsron Member Posts: 116
    #3
    hwt said:

    The countdown is on!

    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.

    thankyou, will look into

    thankyou, will look into that.

    the aquafor is greasy.

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

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Janet....I used

    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

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #5
    janetluvsron said:

    thankyou, will look into

    thankyou, will look into that.

    the aquafor is greasy.

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

    Worth Looking Into

    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"

  • janetluvsron
    janetluvsron Member Posts: 116
    #6
    phrannie51 said:

    Janet....I used

    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

    Thanks T and Phrannie
    will be

    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
    Skiffin16 Member Posts: 8,305 Member
    #7
    GroundHogs Day

    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
    donfoo Member Posts: 1,773 Member
    #8
    glad the bus is moving

    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
    janetluvsron Member Posts: 116
    #9
    donfoo said:

    glad the bus is moving

    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

    ron went to work then ran

    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

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #10
    fresh face

    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

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    janetluvsron said:

    ron went to work then ran

    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

    Ran Over...

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

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

    JG

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #12
    janetluvsron said:

    ron went to work then ran

    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

    So Soon?

    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"

  • JerryNG
    JerryNG Member Posts: 6
    #13
    same time table

    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
    janetluvsron Member Posts: 116
    #14
    Skiffin16 said:

    Ran Over...

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

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

    JG

    thankyou for the laugh, I

    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.

     

  • janetluvsron
    janetluvsron Member Posts: 116
    #15
    fishmanpa said:

    So Soon?

    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"

    T
    he is eating and drinking

    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

  • janetluvsron
    janetluvsron Member Posts: 116
    #16
    JerryNG said:

    same time table

    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. 

     

    thanks matt, need bumpers for

    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
    hwt Member Posts: 2,328 Member
    #17
    JerryNG said:

    same time table

    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. 

     

    Janet

    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
    janetluvsron Member Posts: 116
    #18
    well, after a nap he did feel

    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
    janetluvsron Member Posts: 116
    #19
    GREAT

    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
    Skiffin16 Member Posts: 8,305 Member
    #20
    janetluvsron said:

    GREAT

    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

    Back to Normal...

    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
    janetluvsron Member Posts: 116
    #21
    Skiffin16 said:

    Back to Normal...

    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

    yes, he had steroids and

    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

Discussion Boards