what should I expect on the first day of chemo?

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Tdubz
Posts: 83
Joined: Sun May 07, 2017 11:01 am

what should I expect on the first day of chemo?

Postby Tdubz » Sun May 07, 2017 3:26 pm

Hey guys,

I'm a newbie to this forum, mid 30's, diagnosed with stage 3 colon cancer in mid march, partial colectomy in April, port put in 2 days ago and chemo starts tomorrow. Needless to say it's been a whirlwind of a month and a half.

I'm pretty nervous about starting chemo (folfox) and I was curious on what to expect for my first time. Anyone have any stories they'd like to share about their first time? Do you start feeling the side effects right away? Does the port hurt to use?

Also, what is the proper etiquette for an infusion room? I'll be in one giant room with about 50 or more chairs and I'm told it gets pretty packed. They told me to avoid bringing in strong smelling foods and not to wear cologne, but what else should I know? I'll be there for quite a while but will I be hungry when I'm getting the chemo? I was told to bring snacks but didn't know if that would make me feel sick. My "tour" of the infusion room was on a Friday around closing time so it was empty and quiet so I didn't get a feel for what the room was like. did you guys find that most people talked to their neighbors or do people prefer to be left alone? I plan on taking an iPad and watching movies most of the day, but wouldn't mind chatting a bit. Any other advice for a first timer? Thanks

Lee
Posts: 5161
Joined: Sun Apr 16, 2006 4:09 pm

Re: what should I expect on the first day of chemo?

Postby Lee » Sun May 07, 2017 4:47 pm

Tdubz wrote:Hey guys, .

I'm pretty nervous about starting chemo (folfox) and I was curious on what to expect for my first time. Anyone have any stories they'd like to share about their first time? Do you start feeling the side effects right away? Does the port hurt to use?


Yes you will probably notice a "very mild" side effect that first time. Watch for side effect as they will be accumulative. Be sure to keep your Onc informed of your side effects. Anything cold especially over time is your enemy.

*IMPORTANT* If you not already doing so, Drink a ton of liquid today. You will lose it in the next 48 hrs. You want to avoid dehydrated at all cost. Dehydration will land you in the ER faster than anything else.

I always got an egg cheese breakfast sandwich on way to infusion. I found keeping food in stomach kept nausea at bay. Also eating several small meals vs 3 meals was better for me.

The needle into the port is a small prick. I was not allowed to shower while hooked up to the fanny pack. Will you get the pack or take the pills.? If pack, I always took a shower morning of, wore a comfortable shirt as I could not change it and lived in it for the 3 days. Day I wad disconnected, would go home and shower.

Think of it as week on chemo, week off chemo. During chemo, especially toward the end, getting off the sofa to get food from freezer to microwave to table was a struggle. Plans meals ahead.

Something that really helped me. Plan an activity that you enjoy during your week off. Me I got together with a friend, lunch, shopping,etc. One day I did not see Dr or think about cancer. One day to be normal.

Some people bring their IPod, computer, etc, me I enjoyed talking to the people around me

Hope this helps some, let us know how it goes,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

DebZ
Posts: 70
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Re: what should I expect on the first day of chemo?

Postby DebZ » Sun May 07, 2017 5:01 pm

My infusion center sounds much more private since we have our own pod with curtain to shut if wanted. My sister always comes with and we chat the entire time. Patients don't really interact, but could be because of our layout. I have a lot of premeds, including Benadryl, which makes me absolutely goofy. I wouldn't be able to focus on a Tv or iPod. Snacks are a lifesaver. I do much better with something in my stomach, but everyone is so different. My infusion center has volunteers who wheel around snack cart with drinks, all for free.

For your first time, I would bring snacks just in case. Some people can have serious side effects, so speak up immediately if you feel "funny" at all. I hate to say that no one can predict what effects it can have on you until you go through it! There's great anti-nausea drugs so speak up if you feel sick at all. I'm not sure if I'm helping, but the first time is nerve racking but gets better. Getting my port accessed doesn't hurt at all and I go home with pump for 46 hours. Wearing a v-neck or button up shirt certainly helps.
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014: Folfox 12 treatments (lots of reductions in oxaliplatin and ceased before end)
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and complete hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switching to Folfox+Avastin

Tdubz
Posts: 83
Joined: Sun May 07, 2017 11:01 am

Re: what should I expect on the first day of chemo?

Postby Tdubz » Sun May 07, 2017 5:26 pm

Thank you for the replies. All good info.

zephyr
Posts: 30
Joined: Thu Aug 18, 2016 7:31 am

Re: what should I expect on the first day of chemo?

Postby zephyr » Sun May 07, 2017 7:12 pm

Forgive me if I repeat what others have said. It helps me keep a train of thought to write it as it comes to me.

If they don't offer bottled water, take a bottle or two. I was told to always eat a light breakfast before chemo. Take snacks if you think you'll get the munchies from sitting there for 3 hours; I'm rarely hungry but sometimes I'm snacky and I usually grab a cracker or two. Don't take anything spicy until you know how your stomach will react to chemo. Water, water, water. You want to stay hydrated. This is a BIG deal, as I think someone else mentioned.

Different people respond differently to the same medication so you will hear about different experiences, and I'm guessing that different infusion centers have different ways of doing things, but I'll give you an idea of how my sessions go. If they gave you Lidocaine cream, put a nickel sized glob of that on your port about an hour before you get there. Cover the cream with a small piece of plastic wrap, just to keep the cream in place. The cream is to numb the area so that you don't feel it when they insert the port needle. Don't worry if you forget - they will probably have numbing spray on their carts. Plus I know lots of people who never bother with the cream or the spray and say it's not a big deal. My chemo nurse, who has been doing this for about 20 years and is awesome, always tells me to take a deep breath and then when I let it out she pushes in the needle thingy. Never feel it. After you're set up with that, the nurse will take blood from the port - maybe not the first time but for all future visits - and then you'll wait to make sure your blood levels are ok for chemo. Those blood levels - especially platelets and white blood cells - may be a moving target later. If your levels are ok, then they will hook you up. And then you basically sit there for about 3 hours. Boredom can play a big part.

Important ---> wear a button-down shirt or a v-neck t-shirt that makes it really easy to get to the port. Wear comfortable pants that are easy to get on and off. If you need to go to the bathroom, you'll be dragging your IV pole with you and you don't want to be fumbling with tight jeans and such. Just my opinion, your mileage may vary. :)

I find that I am often a little cold so I have a lightweight blanket in my chemo bag (a backpack that I dedicate to stuff I might need during infusions). I also take a Kindle or iPad, and an iPod that I use just for meditation. If your infusion center has good wi-fi you can watch a movie or whatever. I usually just read. You shouldn't need any medication - they will give you anti-nausea meds in your IV so you won't need those until later, if at all.

Did I mention water? Water, water, water. Can't say it often enough. AFTER the infusion, keep up with your water, not only to keep from getting dehydrated but also to flush the chemo out of your system.

When the infusion is over, they will hook up the fluid lines to a pump. There are different kinds of pumps. Mine was one inside a fanny pack. You'll live with the pump for 2 more days. It's not as bad as it sounds, at least I don't think so but it does take some getting used to. I've heard that some people shower with the pump sitting outside the shower but I don't think I could safely do it. To be safe, shower/bathe before you go in case you have to go 3 days without.

Don't think of chemo as poison; it's magic juice.

I'm usually very sleepy for a few days after the infusion. The first time was the worst, maybe because I had so much anxiety going into it that I crashed afterwards. You may experience nausea and probably already have anti-nausea meds. If not, fill the prescription before the infusion. You may experience constipation and the anti-nausea drugs might make it worse. Zofran especially can cause constipation; I had to toss mine for that reason. If you live in a medical marijuana state, consider getting a vape pen; it stops the nausea almost instantaneously without the pesky side effects. You can get a vape cartridge with a dose of THC that's so low that you'll wonder if you got ripped off - but you'll know it's real when the nausea hits and 1 good puff does the trick. Back to the constipation, try glycerin suppositories (drugstore) if it gets really bad. You might want to consider taking Colace or another stool softener starting a day or two before the infusion. It's a trial and error kind of thing. A lot of people use Miralax daily. If you want something more natural, try Smooth Move Tea by Traditional Medicinals (don't drink too much, it can be powerful) or Calm magnesium powder. I buy them both at Sprouts or on Amazon. You may get hemorrhoids; I've found that coconut oil suppositories do wonders for me (found that tip on a pregnancy forum). I make my own; feel free to PM me if you want more info about that.

This is all from my own experience and you may not have any of these side effects and/or the remedies I've found may not work for you. I'm not a doctor or nurse, just another patient sharing my story.

Wishing you peace and an easy chemo experience. It will be ok ... you can do this. :)

P.S. Did I mention water?!?!
Oct-09 Stage I CC
Jun-16 Stage III (T3 N1c)
Jun-16 Surgery
Jul-16 Probable Stage IV with inoperable lung mets
Aug-16 FOLFOX
Jan-17 Dropped Oxi, continuing with 5FU & Avastin

Tdubz
Posts: 83
Joined: Sun May 07, 2017 11:01 am

Re: what should I expect on the first day of chemo?

Postby Tdubz » Sun May 07, 2017 9:16 pm

Thanks for the reply. I was curious if I should eat breakfast or not. Lots of different opinions I've found on the internet about that. I think I'll eat something light just so I won't be starving. Thanks for the heads up about the clothing. Im hoping a polo shirt will do the trick for now, until I can get some button down shirts that fit (I lost 30 pounds since my colectomy). Definitely trying to keep up on the water too.

sdino
Posts: 36
Joined: Tue Mar 28, 2017 5:32 pm

Re: what should I expect on the first day of chemo?

Postby sdino » Mon May 08, 2017 8:07 am

Hi Tdubz - I think all the responses you received covered things very well. My wife has an infusion port, so she rubs a numbing cream on the port area (lidocaine) half hour before hookup. Be careful of any allergic reactions, in only 1 out of 12 chemo treatments, when my wife was leaving the treatment center, she got real blotchy and blood pressure went thru the roof, we brought her back to chemo area where they administered IV Benadryl and all was well shortly after that. (Keep monitoring blood pressure and look for rashes). The only other thing is to make sure everyone is on the same page with Chemo times ie... Visiting Nurse Associations (VNA) for hookups and unhookups @ home if you have a fanny-pak pump for Fluorouracil. Best wishes ! Sdino
Caregiver for Wife 52 yrs old
DX: 11/16-CC sigmoid colon 3 cm, Lung Bio-Adenocarcinoma Stg IV
Mets: 1.2 cm now 7 mm lung w/14 other nodules less than 6 mm. 7/17 growth in Mets
MSS, KRAS-mut G12D; TP53;
Completed 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17
8/17 Start Xeloda + Avastin
CT Scans: 11/16; 1/17 lung mets/colon shrinkage; 5/17 colon & lung met shrinkage, 7/17 disease progression lungs/colon
CEA: 16 - 11/16; 4 – 12/16; 0.5 – 2/17; 0.6 - 5/17; 2.6 - 7/17

sammer718
Posts: 13
Joined: Thu Jul 14, 2016 6:22 am

Re: what should I expect on the first day of chemo?

Postby sammer718 » Mon May 08, 2017 1:47 pm

Good luck!
I also like to eat before getting there. Sometimes I eat snacks that I bring and sometimes I don't. If you are getting the oxaliplatin, bring room temperature water as the cold sensitivity kicked in right away for me.
I usually bring a blanket, but many infusion centers have extras.
Always bring headphones, music, a book, or whatever will keep you busy/distracted.

Normally on the first day of infusion, my bones/body would ache after and that night. On day two and three, I generally felt nauseous and blah. Compazine was my friend, iv dose of emend and Ativan, and the Sancuso patch. Zofran made me constipated.

I'm starting my second treatment today - folfiri. I hope you don't have too many side effects!
28 y/o female.
Stage IIIc colon cancer 9/2015. Sigmoid colon resection, removal of tumor.
12 folfox/5fu treatments 10/15- 3/16.
Clear CT scan 4/16.
Clear colonoscopy 7/16.
Clear CT scan 10/16.
Found enlarged lymph nodes in peritoneal cavity 4/17 on CT scan.
Pet scan confirmed enlarged retroperitoneal lymph node 4/17.
Started FOLFIRI + Avastin 5/17

Tdubz
Posts: 83
Joined: Sun May 07, 2017 11:01 am

Re: what should I expect on the first day of chemo?

Postby Tdubz » Mon May 08, 2017 3:06 pm

Well good news, it wasn't anywhere near as bad as I thought it would be. I ate a decent breakfast.i got there and they hooked up the port to draw blood. Didn't hurt by any means but just felt a little weird lol., but the port made everything else super easy. I was there for 6 hours so I had a few snacks and ate lunch, all of which was fine. I eventually took a nap. I think I've only felt one side side effect which was the first bite syndrome, but it was mild and went away quickly.

Lee
Posts: 5161
Joined: Sun Apr 16, 2006 4:09 pm

Re: what should I expect on the first day of chemo?

Postby Lee » Mon May 08, 2017 4:55 pm

Tdubz,

How did chemo go? Hope your doing okay.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Tdubz
Posts: 83
Joined: Sun May 07, 2017 11:01 am

Re: what should I expect on the first day of chemo?

Postby Tdubz » Mon May 08, 2017 5:43 pm

I also have slight joint pain in my hips and knees. I'm wondering if that is related?

Now I have to figure out how to deal with this pump lol

Tdubz
Posts: 83
Joined: Sun May 07, 2017 11:01 am

Re: what should I expect on the first day of chemo?

Postby Tdubz » Mon May 08, 2017 8:18 pm

Possible side effects so far:
First bite
Achy joints
Cold sensitivity

None of these have been bad. The cold sensitivity actually kicked in as I was halfway finishing a milkshake. Thought I got lucky and wasn't gonna get that side effect lol. Oh well, room temperature it is.

benben
Posts: 211
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: what should I expect on the first day of chemo?

Postby benben » Mon May 08, 2017 8:21 pm

Tdubz wrote:Well good news, it wasn't anywhere near as bad as I thought it would be. I ate a decent breakfast.i got there and they hooked up the port to draw blood. Didn't hurt by any means but just felt a little weird lol., but the port made everything else super easy. I was there for 6 hours so I had a few snacks and ate lunch, all of which was fine. I eventually took a nap. I think I've only felt one side side effect which was the first bite syndrome, but it was mild and went away quickly.


That's good to hear Tdubz. I'm waiting for my first chemo treatment on 5/22 so this is nice to hear for multiple reasons - glad it wasn't bad for you. You still carrying around a pump for couple days?
I'm surprised you just got port in a couple days ago and already starting. My port is just finally settling in and was installed 5 days ago. The skin on top of my port is still bruised purple while there is a large yellow bruise around the surrounding tissue they pushed things around in. Keep us updated on how subsequent treatments go. Best of luck.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8 - NO OXI, just Luke and 5FU here on out.
Current - 10 treatments done, LOW RBC

Tdubz
Posts: 83
Joined: Sun May 07, 2017 11:01 am

Re: what should I expect on the first day of chemo?

Postby Tdubz » Mon May 08, 2017 8:51 pm

benben wrote:
Tdubz wrote:Well good news, it wasn't anywhere near as bad as I thought it would be. I ate a decent breakfast.i got there and they hooked up the port to draw blood. Didn't hurt by any means but just felt a little weird lol., but the port made everything else super easy. I was there for 6 hours so I had a few snacks and ate lunch, all of which was fine. I eventually took a nap. I think I've only felt one side side effect which was the first bite syndrome, but it was mild and went away quickly.


That's good to hear Tdubz. I'm waiting for my first chemo treatment on 5/22 so this is nice to hear for multiple reasons - glad it wasn't bad for you. You still carrying around a pump for couple days?
I'm surprised you just got port in a couple days ago and already starting. My port is just finally settling in and was installed 5 days ago. The skin on top of my port is still bruised purple while there is a large yellow bruise around the surrounding tissue they pushed things around in. Keep us updated on how subsequent treatments go. Best of luck.


Hey benben,

I was surprised about the port too, but I've read multiple stories where they will use the port the same day it's installed. I put a big glob of the lidocaine cream they gave me on it, rubbed it in and covered with a piece of plastic wrap so it didn't get on my clothes. it did the trick. I didn't feel any pain, maybe a small bit of pressure. I was joking with my wife that if felt like I was being plugged in to the matrix lol.

I do have the pump, it's a bit more awkward than I imagined, but it's manageable. Mine is about 8" long and 4" wide. I've been laying down in bed mostly so it hasn't been in the way. I don't move in my sleep so I'll probably try wearing it tonight but I was warned several times to make sure you are aware of where your pump is so you don't yank the tubes.

I've had a few mild side effects so I'm writing all those down so I can tell my doctor about it next time.

Soccermom2boys
Posts: 141
Joined: Tue Nov 10, 2015 10:29 pm

Re: what should I expect on the first day of chemo?

Postby Soccermom2boys » Mon May 08, 2017 10:50 pm

Tdubz wrote:Possible side effects so far:
First bite
Achy joints
Cold sensitivity

None of these have been bad. The cold sensitivity actually kicked in as I was halfway finishing a milkshake. Thought I got lucky and wasn't gonna get that side effect lol. Oh well, room temperature it is.


Welcome to the FOLFOX side effects club! It is a weird feeling for sure the first time, anticipating what may come. I never had the first bite issue, but for sure the achy joints and cold sensitivity. Just in the mornings if it was even slightly chilly, touching my cool clothing to get dressed for work was an unpleasant pins and needles feeling. Fortunately the moment I ran them under warm water or used a heatable gel pad it wore off. Glad you got the first session under your belt, it's almost more of a mental hurdle than a physical one that first time around. Hope all goes well with the pump these next two days until disconnect. :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox
With these odds, how have I not won the lottery already?!


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