1 down, 32 to go. - and a question or two

NJShore · December 2012

Well we did it.. Dan had his first radiation treatment today, he was thrilled, he didn't need to disrobe, and it took less than 10 mins in the room. In fact he said the radiation took less than 2 mins. You have to love technology.. Er...Maybe not. However they did serve chocolate after!

We also got a sample of Mugard! 1 bottle free in a cool Mugard bag! Then came home to 6 bottles on the foot door step. They had just heard of Mugard last week. They approved and highly endorse the use of the calendula cream. They referred me to the doctor for use of the glutimine use. 2 out of 3 isn't bad for a first day.

Here's our questions..

1) Dan started swelling on day1? About 5 hours after treatment. Did anyone else remember having swelling that quick? Good sign? Bad sign?

2). How often did you all apply the calendula cream? Is there such a thing as too much?

Tomorrow is chemo, I was so jumpy today, although I hope good at hiding it, hoping tomorrow is less nerve racking .. But then again it is chemo too.. Cisplatin and taxol(msp?).

I'd do anything to go through this for him.. And he really is ok with it, it's just not easy to watch someone you love hurt.

Thanks again for all the kindness and support I have found here.

Kari

Skiffin16 · December 2012

WooHooo... The Bus is Rollin...
No swelling, actually rather un-eventful for the first week or so concerning rads.

I did have chemo with Cisplatin, Taxotere, 5FU, then Carboplatin with the rads.

The chemo tomorrow could take awhile..., bring lunches for you and hubby..more than likely, they'll have plenty of fluids.

First chemo day is usually the longest... getting used to the procedure. Then depending on if it's pump infused, the need to figure out a good flow rate.

You'll also more than likley have several bags of fluids ran through, reaction type drugs like benedryl, possibly steroids, lasix to flush it, the chemo... Usually a complete blood count test precedes everything...

Again, it's an all day thing usually...

Sit close to the rest rooms...., with the lasix, flushing drugs, hydration if you have those, you pee a lot...

I presume he is getting rads tomorrow also...

Then home, rest, and a lot of fluids...

Best,
John

phrannie51 · December 2012

He's on his way!!!
I didn't have any swelling either, until down the road...and even then, it was slight. I'd ask the rad doc about it...but it may just be the way his skin reacts.

He can use all the Calendula he wants as long as he washes it off before his rad treatment...it is very healing. I used Aloe99 (it's 99% pure Aloe Vera)first, let it dry, and then put on the Calendula.

John gave you all the good tips about chemo...especially the sitting close to the bathroom...I had many very close calls.

Also, the eating part...everybody had someone either bring in something or had brought something, and I was sitting there starving...my first chemo took from 8:30 in the morning until nearly 5:00 in the afternoon. He will probably sleep quite a bit while getting infused...the benedryl knocks a person out. Since he'll be getting radiation tomorrow, too...they will probably send him out to get it, then come back and finish his chemo...or at least that's how my Onc did me.

Being jumpy is so normal...you're under a lot of stress in an unknown landscape...

p

ToBeGolden · December 2012

CRACKERS
There is a reason crackers are spread out in many oncology offices. Saltines. I found I was most nauseous when EITHER full or empty. So I nibbled all day while on chemo. At saltines in the car. Other types of crackers also helped. I didn't eat many. About 4/hour. But that's just me. Rick.

Billie67 · December 2012

ToBeGolden said:
CRACKERS
There is a reason crackers are spread out in many oncology offices. Saltines. I found I was most nauseous when EITHER full or empty. So I nibbled all day while on chemo. At saltines in the car. Other types of crackers also helped. I didn't eat many. About 4/hour. But that's just me. Rick.

Swelling
The exact thing happened to me! In my case chemo was one week before I started rads and so I went to chemo on Wednesday and then one week later I went to chemo again and then had my first day of rads immediately following. Afterwards I came home exhausted from a few hours at chemo then probably the stress of my first rads not to mention the benadryl and anti nausea meds you get at Chemo. Anyway, I took about a 2 or 3 hour nap in the recliner and when I woke up my neck was sore and visibly swollen. Of course I called chemo, they blamed rads and then I called rad onc and they blamed chemo! In either case, I was still a bit swollen the next morning when I went to rads. When they came in to "check my swelling" all they said was "hmmm not quite sure why that's happened to you"
Good thing is, it went down and never happened again like that. It wasn't until I started getting the burns that I was sore again but your hubby is still a way off from that I'd imagine.
As for staring chemo tomorrow, the others covered most everything with the exception of one thing that helped me....dress comfy! Like as in sweats and and loose. I had a nurse tell me that at my teaching appointment and boy I'm glad she did. Most places have blankets and some even have warmed blankets but I'd bring one and leave it in the car just in case they don't have one. I was always cold during treatment and my place had blankets but I have one that is so soft and warm that I loved using.
Like the others said, bring some snacks because the first loading dose of chemo takes a while.
Then off to rads, whew busy day for you....I remember it well. Good thing for your hubby, sounds like his rads were very quick! I know mine lasted 4 whole songs on the CD player haha
Good luck tomorrow and keep us posted on how he does.
Billie

CivilMatt · December 2012

oh what a day
Kari,

Great you’ve got started, but 2 minutes, they must have fast electricity in New Jersey.

I did not have any swelling (inside or out) for a few weeks. Maybe it is anticipation swelling?

Getting chemo I found out what all those “infusion parking spots only” were for. Kind of like I was royalty. As everyone said get the room close to the bathroom, bring something to eat (for you too), wear comfy clothes. You learn the tricks. By the time I was finished, I had the big room with the picture window, wide screen TV, two recliners and warm blankets for my wife and me (it was a real hoot of a time, some might call it a cancer date). By that time I also learned how to push an IV cart to the head and sleep at will.

Believe me, just being a caretaker is enough for one person, your roll as wife, mother and nurse (I use these terms lovingly) will become self evident. My wife did everything for me, I was on cruise control the whole time.

Be prepared for nausea.

Best,

Matt

NJShore · December 2012

CivilMatt said:
oh what a day
Kari,

Great you’ve got started, but 2 minutes, they must have fast electricity in New Jersey.

I did not have any swelling (inside or out) for a few weeks. Maybe it is anticipation swelling?

Getting chemo I found out what all those “infusion parking spots only” were for. Kind of like I was royalty. As everyone said get the room close to the bathroom, bring something to eat (for you too), wear comfy clothes. You learn the tricks. By the time I was finished, I had the big room with the picture window, wide screen TV, two recliners and warm blankets for my wife and me (it was a real hoot of a time, some might call it a cancer date). By that time I also learned how to push an IV cart to the head and sleep at will.

Believe me, just being a caretaker is enough for one person, your roll as wife, mother and nurse (I use these terms lovingly) will become self evident. My wife did everything for me, I was on cruise control the whole time.

Be prepared for nausea.

Best,

Matt

Fastest electric in the east
Matt, and all,

Thank you so much for the feed back, I thought of you all today. I told Dans nurse we were advised by experts in the field that he needed a station next to the little room... Only 2 doors away! She giggled when I explained.

The IMRT machine they are treating Dan on is brand new.. It does 40 minute radiation session, less than 10 minutes, and no clicking.. More like a long hum sound. The actual Rad part is less then two minutes.. Takes longer to set him up than zap him. (His word). Same amount of Rads though.. Just faster.

Today was his first chemo too.. It's not easy to watch, the nurse was great.. Answered a ton of questions. Definitely Cisplatin and Paclitaxel. She said his hair would start to fall out next week, and he'll lose his beard, eyebrows and eye lashes fast too... Said it can grow in different color or texture.. So who knows what he will look like, but inside he's beautiful!

So much happening so fast.. I feel like I am on a fair ride and it just won't stop.. I know it won't and I know this will pass, and he will be OK.. And I will rise to the challenge, because that's what I do.. But I am waiting for 5 peaceful minutes.. That will help.. Hopefully soon!

Again, thanks for all of the help getting through our firsts.. 31 rads left, only 5 chemo's..

Kari

patricke · December 2012

OFF AND RUNNING
Hey Kari, I'm glad to hear that the process has started, which means Dan is on his way to the end of treatment. It's been a while since being rad zapped, but i don't remember swelling, so you might want to check with Dan's doc about it. I didn't use any cream back in the day, as they say, so I am also of no help there either. Remember that some days will be beter than others, and look at this as a marathon and not a sprint, thus take it slow and steady, taking the process one day, hour, minute, or second at a time.

PATRICK

AJW1966 · December 2012

im no expert...
you said it's "faster rads". Maybe the concentration of rads into the 2 min is causing the swelling? Something to monitor. Always keep Dr's aware of ANY changes! My doc's were excellent. They took the time to see me, even when it wasn't scheduled, to address any concerns.
The calendula can be used whenever but make sure to wash it off an hr or two before rads.
Start today if you like. I started as soon as the redness appeared.
I kept a tube with me and applied right after treatments.
Also, some advise, do not wash the neck where rads hit. Let the water cascade on the area and pat it dry. If you wash it, you may aggravate the area and make it worse.
All the best,
God bless
Alan

longtermsurvivor · December 2012

Hey Jersey
I have only a couple of thoughts:

1) the swelling does not conote either good or bad. It just happens when it choses to.

2) Enjoy the chocolate now.

One day after the next, time passes, and you both become experts at all this.

Pat

hwt · December 2012

longtermsurvivor said:
Hey Jersey
I have only a couple of thoughts:

1) the swelling does not conote either good or bad. It just happens when it choses to.

2) Enjoy the chocolate now.

One day after the next, time passes, and you both become experts at all this.

Pat

Kari
I stuck with the anti-nausea drugs as prescribed and never had any nausea. Interesting about the hair loss. I had Cisplatin and Chemo doc told me it would not cause hair loss but the radiation might cause me to lose it in the back. About 2 weeks after tx finished I lost about 3 inches bottom back, between my ears. It's back in now about an inch. Maybe your husband's second drug may cause the hair loss, I'm not familiar with it. Regardless, it's one side effect that isn't painful :-) Hoping he has an easy journey.

NJShore · December 2012

ToBeGolden said:
CRACKERS
There is a reason crackers are spread out in many oncology offices. Saltines. I found I was most nauseous when EITHER full or empty. So I nibbled all day while on chemo. At saltines in the car. Other types of crackers also helped. I didn't eat many. About 4/hour. But that's just me. Rick.

Crackers and then some!
Seemed that Dan at anything in the room that was edible.. In two days he's gained 3 lbs! I am thrilled he gained but he had a ton of cookies in there too.

He's newly diabetic and not taking meds right now, so next time, he has to use his new pen for an injection.

The doctor today said most of his reactions were probably diabetic responses not chemo. The swelling probably just aggravated area where there are no lymph nodes from surgery, from our 2 hour drive each way.

It was kind of weird to watch someone manically eat, then manically sleep, and definitely manically run to the mens room! It was a cycle for hours.

Kari

jcortney · December 2012

NJShore said:
Fastest electric in the east
Matt, and all,

Thank you so much for the feed back, I thought of you all today. I told Dans nurse we were advised by experts in the field that he needed a station next to the little room... Only 2 doors away! She giggled when I explained.

The IMRT machine they are treating Dan on is brand new.. It does 40 minute radiation session, less than 10 minutes, and no clicking.. More like a long hum sound. The actual Rad part is less then two minutes.. Takes longer to set him up than zap him. (His word). Same amount of Rads though.. Just faster.

Today was his first chemo too.. It's not easy to watch, the nurse was great.. Answered a ton of questions. Definitely Cisplatin and Paclitaxel. She said his hair would start to fall out next week, and he'll lose his beard, eyebrows and eye lashes fast too... Said it can grow in different color or texture.. So who knows what he will look like, but inside he's beautiful!

So much happening so fast.. I feel like I am on a fair ride and it just won't stop.. I know it won't and I know this will pass, and he will be OK.. And I will rise to the challenge, because that's what I do.. But I am waiting for 5 peaceful minutes.. That will help.. Hopefully soon!

Again, thanks for all of the help getting through our firsts.. 31 rads left, only 5 chemo's..

Kari

Hair loss and more
"Definitely Cisplatin and Paclitaxel. She said his hair would start to fall out next week, and he'll lose his beard, eyebrows and eye lashes fast too"

I started to loose my hair about two weeks in to the Cisplatin (Induction). Went and had my head shaved so I would have to deal with it on a daily basis. Turns out for me, it was a great decision. Hair today gone tomorrow

Never did loose my eyebrows or eye lashes, was really happy about that is that I just looked like a normal guy with a shaved head.

The Cisplatin is rough but make sure he takes ALL the anti-nausea drugs they prescribe, I never did loose a meal. Don't get me wrong, there were a lot of meals my body just wouldn't eat, but it wasn't nausea. Now, as a side effect of the anti-nausea drugs he will probably get constipated. My Doc's mantra worked for me, it was: multiple products, multiple doses. What this mean was senacote (sp?) in the morning and another brand (can't remember but it was a tasteless powder) in the evening. It was important, as with all medications, to get ahead of the symptom and then back off when everything was working properly.

Also, be on the lookout for the dreaded thrush. The first signs (for me) were a lot of mucous and my tongue turning white. Made it almost impossible to swallow. Tell your Doc's RIGHT AWAY as there are really good drugs to get rid of it in a few days.

Good luck and keep asking questions.

Joe Cortney
Dallas, TX

1 down, 32 to go. - and a question or two

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