Quick intro -- diagnosed Friday

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annieliz
Posts: 37
Joined: Fri Jul 26, 2019 5:13 pm

Re: Quick intro -- diagnosed Friday

Postby annieliz » Sat Sep 21, 2019 8:41 pm

Hi Zack,
Glad you are getting used to your port. From what I remember, you are not doing Folfox - just an oxaliplatin infusion and then you take pills, right? Anyway, my first infusion went a lot more quickly than I thought it would, and I brought far too much stuff with me which I had to lug back and forth between Grand Central and 53rd street. I had my phone, an iPad, charger, ginger ale, diet coke, a bottle of water, 2 knit hats (it was over 80 degrees in August), mittens, a container of Charms hard candy, and all I did was drink the water! The infusion rooms have televisions and each location seems to have a different set-up. 53rd street has a tv mounted on the wall and they give you headphones. Westchester had a small tv attached to the infusion chair but they didn't require headphones. So, depending on what you like to do, you probably only need one or two things - like a book you may be reading, or a tablet. You may get hungry, so you might want to bring a snack. I ate a sandwich during my last infusion as it took place at 12:45.

I don't remember any smells from the infusion. I read about the ice chips - they say it's supposed to eliminate or at least cut down the cold sensitivity in your mouth, but I didn't try it. I've seen ice and water dispensers as MSK, but I don't know if they have ice chips.

As far as the timing goes, for me, the infusion pre-meds to prevent nausea took about 10 minutes. My dose of oxaliplatin takes 85 minutes. The time went by quickly because my nurse spent a lot of time explaining things. Also, because I go home connected to a pump of 5fu, I had to practice the disconnect procedure as I do that myself at home on Sundays. If I remember your posts correctly, I don't think you will be going home with a pump, so you may have more time to yourself during the infusion.

I think that's about it. I hope your treatment goes well. I will be following you next Friday for #4! Halfway there!!

Have a good night,
annieliz
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

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horizon
Posts: 1515
Joined: Tue Apr 12, 2011 10:10 pm

Re: Quick intro -- diagnosed Friday

Postby horizon » Sat Sep 21, 2019 9:04 pm

Zackattack wrote:
MeAndMine wrote: Sounds weird to say but I just want to know how it feels, make sure I don't have a terrible adverse reaction physically etc.


That doesn't sound weird at all to me. I was terrified before my first infusion because I had no idea what it would be like. Once I got one under my belt it was so much better to prepare mentally.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Rock_Robster
Posts: 342
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Quick intro -- diagnosed Friday

Postby Rock_Robster » Sat Sep 21, 2019 9:13 pm

horizon wrote:
Zackattack wrote:
MeAndMine wrote: Sounds weird to say but I just want to know how it feels, make sure I don't have a terrible adverse reaction physically etc.


That doesn't sound weird at all to me. I was terrified before my first infusion because I had no idea what it would be like. Once I got one under my belt it was so much better to prepare mentally.

Completely agree. For most folk, the first infusions are fairly straightforward, and the side effects begin to stack up after a while. However this next part I say not to worry you but to give you some hope just in case - for me (and some others) the first round was actually the most challenging. I say this just in case you find it tough, it may actually get easier form here. Once my body ‘learned’ the process, and my mind accepted the effects and realised that they do definitely pass and I won’t feel that way forever, I found the subsequent treatments significantly easier with this anxiety removed.

Best wishes,
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

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ANDRETEXAS
Posts: 620
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Quick intro -- diagnosed Friday

Postby ANDRETEXAS » Sun Sep 22, 2019 12:22 am

During my first infusion, I had moo shu pork :D Drank cold beverages up until my body said "Oh no you don't." That was around the third or fourth round, I also liked Lemon Head candy, soups and Pellegrino. You will do just fine. One day at a time !
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

Pyro
Posts: 297
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Quick intro -- diagnosed Friday

Postby Pyro » Sun Sep 22, 2019 8:12 am

Counterpoint and transparency, it isn’t like the above posters for everyone. I even got an allergic reaction to erbitux after about 20 treatments that sucked really bad. My body never got used to it and it was worse every time, with the occasional easy treatment. Everyone reacts different, take care of yourself and expect the unexpected.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

annieliz
Posts: 37
Joined: Fri Jul 26, 2019 5:13 pm

Re: Quick intro -- diagnosed Friday

Postby annieliz » Sun Sep 22, 2019 9:31 am

Pyro is absolutely correct, which is why I packed so many items in my bag for my first treatment. Also, never hesitate to call the number for your doctor's office during business hours, or the on-call number after hours if you have ANY questions about anything of concern. I called several times when I was experiencing various side effects, like waking up with what I thought was an allergic reaction, but was acutally just a red flush from the steroids in the pre-med.
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19 - 1.9
8/16/19 begin FOLFOX

MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Quick intro -- diagnosed Friday

Postby MeAndMine » Sun Sep 22, 2019 10:54 am

Happy to see you are progressing too, how's the radiation/etc treatment going thus far? How are you feeling?

I think I started having side effects a bit earlier than most. Probably because I'm on 24/7 chemo instead of 5 days on 2 days off like most people doing chemoradiation. Still not real sure why my oncologist is doing that but I'm trying to stick with it. The radiation is the regular 5 days so at least I have the weekends off from that. I think I need an attitude adjustment, but I'm hanging in there.

I know you are ready to get things started next week. Hope you get some good tips, I'll be following to learn what's next, too! Good luck Zack. Before you know it, your treatments will be done!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

Jannine
Posts: 175
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: Quick intro -- diagnosed Friday

Postby Jannine » Sun Sep 22, 2019 11:14 am

I never smelled anything weird, fortunately. I got cold sensitivity with every infusion, so I could not have done the ice chips thing. I had to ask the nurses not to put ice in my water and even then it was sometimes too cold. So I eventually started to microwave water to heat it up a bit, and take that with me.

On FOLFOX they gave me enough liquids in my infusion that I would have to get up and go to the bathroom several times during the infusion. If I was there at lunchtime they would give me a box lunch; otherwise they give you snacks. I would send my husband off to get food for me once I got into my chair because I got tired of the box lunch. I could eat at the start of the infusion and it was only after the infusion ended that I would start to feel meh about eating (it usually didn't get bad until a day or two after the infusions, and lasted 3-4 days). If you end up not having problems with nausea during the infusion, taking a lunch with you might be a good idea.

For me, getting the infusion with FOLFOX was a long process. Get there, wait maybe 30 minutes to get blood drawn, wait 30-60 minutes for bloodwork to come back, maybe wait another 30 minutes to see the oncologist (every other infusion, so once a month), usually only waited about 15 minutes before I got in an infusion room, wait another 45+ minutes for the chemo drugs to finish being mixed and delivered, then the 2-hour infusion. Knock an hour off of all that if you're not seeing the oncologist that day. Also there were a bunch of other delays depending on the week: monthly staff meetings; at one point the chemo pharmacy was being renovated and all chemo was being mixed in the main pharmacy so there were huge delays; etc. If you have expectations for how long things will take, you're likely to get frustrated.

I always took more stuff with me than I needed, but a book or anything else that you enjoy and can concentrate on (to keep your mind off the chemo) should be enough. Just bring some warm clothes in case you need them on the way home, if you won't be in charge of climate control. My hospital would bring me heated blankets while I was in the chair, which was AWESOME.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

NHMike
Posts: 2272
Joined: Fri Jul 21, 2017 3:43 am

Re: Quick intro -- diagnosed Friday

Postby NHMike » Sun Sep 22, 2019 11:36 am

Jannine wrote:I never smelled anything weird, fortunately. I got cold sensitivity with every infusion, so I could not have done the ice chips thing. I had to ask the nurses not to put ice in my water and even then it was sometimes too cold. So I eventually started to microwave water to heat it up a bit, and take that with me.

On FOLFOX they gave me enough liquids in my infusion that I would have to get up and go to the bathroom several times during the infusion. If I was there at lunchtime they would give me a box lunch; otherwise they give you snacks. I would send my husband off to get food for me once I got into my chair because I got tired of the box lunch. I could eat at the start of the infusion and it was only after the infusion ended that I would start to feel meh about eating (it usually didn't get bad until a day or two after the infusions, and lasted 3-4 days). If you end up not having problems with nausea during the infusion, taking a lunch with you might be a good idea.

For me, getting the infusion with FOLFOX was a long process. Get there, wait maybe 30 minutes to get blood drawn, wait 30-60 minutes for bloodwork to come back, maybe wait another 30 minutes to see the oncologist (every other infusion, so once a month), usually only waited about 15 minutes before I got in an infusion room, wait another 45+ minutes for the chemo drugs to finish being mixed and delivered, then the 2-hour infusion. Knock an hour off of all that if you're not seeing the oncologist that day. Also there were a bunch of other delays depending on the week: monthly staff meetings; at one point the chemo pharmacy was being renovated and all chemo was being mixed in the main pharmacy so there were huge delays; etc. If you have expectations for how long things will take, you're likely to get frustrated.

I always took more stuff with me than I needed, but a book or anything else that you enjoy and can concentrate on (to keep your mind off the chemo) should be enough. Just bring some warm clothes in case you need them on the way home, if you won't be in charge of climate control. My hospital would bring me heated blankets while I was in the chair, which was AWESOME.


I always asked for coffee for a drink during the infusions.

I had to make trips to the bathroom as well during the infusion.

I decided to get the bloodwork drawn the afternoon before the infusion to decrease the elapsed time that I was at the infusion. So I'd go there the afternoon before, get blood drawn on the way home from work, and just go home so it saved the hour waiting for the bloodwork results.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

AlexandraZ
Posts: 48
Joined: Fri Aug 23, 2019 8:25 am

Re: Quick intro -- diagnosed Friday

Postby AlexandraZ » Sun Sep 22, 2019 1:40 pm

In my experience some side effects get better, others get worse. The first round is definitely the scariest as it's just a brand new thing to wrap your head around and you don't know what to expect fully. Then it becomes more routine. Other effects stack up cumulatively as a result of combined toxicity in the system. At my boyfriend's first infusion, an old patient told us "It only gets worse", and I think that's such a terrible and stupid thing to say.
I would advise you to prioritize doing the things you love. Watch your favorite tv shows, go to your favorite cafe, play your favorite video games, whatever keeps you happy. We've been celebrating all minor milestones and it helps things not get too serious. Good luck!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

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Zackattack
Posts: 39
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Tue Sep 24, 2019 2:56 pm

Hi, and thank you for all the replies. Earlier today I took my first dose of Xeloda and nothing abnormal yet. I'm currently receiving the Oxaliplatin right now and everything seems as good as it can be. My only concern was that when the blood was drawn and tested earlier the liver enzymes were elevated above 140.

Of course the main fear is mistatasis to the liver but probably greatly unfounded because there are many reasons why it could be elevated though I'm not a drinker and I'm not taking any pills.

Thoughts!? Plus if a good cat scan get done 2 months ago and didn't show anything then probably not??
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

MeAndMine
Posts: 123
Joined: Mon Aug 05, 2019 2:40 pm

Re: Quick intro -- diagnosed Friday

Postby MeAndMine » Tue Sep 24, 2019 4:54 pm

I know it feels good to finally have the first treatment under your belt and to know that you're on the way. I don't know much about liver enzymes but my mom had issues one time and they asked her how long she'd been drinking. She was never a drinker. It ended up being nothing but something made them ask that with her blood work. At the time she was eating a lot of lemons and pickles. Maybe it could be something in your diet that would cause it.

Hope things remain smooth sailing for you Zack!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

Jannine
Posts: 175
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: Quick intro -- diagnosed Friday

Postby Jannine » Tue Sep 24, 2019 7:08 pm

NHMike wrote:I decided to get the bloodwork drawn the afternoon before the infusion to decrease the elapsed time that I was at the infusion. So I'd go there the afternoon before, get blood drawn on the way home from work, and just go home so it saved the hour waiting for the bloodwork results.


This is brilliant! It would have been out of my way to do this, but I totally would have done it if it had been convenient for me.

Also, hope things are going well for you Zack. Keep us posted. I have no insight on the liver enzymes, other than to say that mine jumped all over the place while I was on chemo.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

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Zackattack
Posts: 39
Joined: Mon Jul 15, 2019 4:28 pm

Re: Quick intro -- diagnosed Friday

Postby Zackattack » Tue Sep 24, 2019 9:44 pm

Feeling loopy so far, if I get up too fast from the couch I see white in my peripherals for a few seconds but don't feel like passing out.

Other than that, a tinge of nausea for a few minutes that passes. The neuropathy is weird, I'd describe it almost like the feeling you get of numbness on your tongue after you have a mint. Nothing yet on the fingers/toes, totally normal.

Having the port was a savior, had to have blood drawn twice to check those weird liver enzymes and the oxaliplatin went in smooth, like a fine cognac.

Liver enzymes have me concerned but I wrote my Oncologist after we met to request an ultrasound on the liver which I haven't yet, of course, rec'd a response. Probably quite a bit premature but what do you all think? Would you push for it or wait 3 weeks for the next blood test?
Colonoscopy due to occasional blood in stool.
DX: Rectal Cancer, 7-12-19 @ age 36, male
CEA Levels of 3.0, seems to be T1 at first glance (and hopefully forever?).
Moderately differentiated cells. 12 to 15cm from anal verge
7-26-19 --Dr. calls to advise upon rerunning pathology, sm3 depth...
TME surgery scheduled for 8/21/19
Successful surgery and feeling good so far
2/15 Lymph nodes had cancer.
Stage 3A T1cN1M0

Rock_Robster
Posts: 342
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Quick intro -- diagnosed Friday

Postby Rock_Robster » Tue Sep 24, 2019 9:48 pm

Zackattack wrote:Having the port was a savior, had to have blood drawn twice to check those weird liver enzymes and the oxaliplatin went in smooth, like a fine cognac.

Liver enzymes have me concerned but I wrote my Oncologist after we met to request an ultrasound on the liver which I haven't yet, of course, rec'd a response. Probably quite a bit premature but what do you all think? Would you push for it or wait 3 weeks for the next blood test?

I want the name of your oxaliplatin supplier! :)

Just to confirm - which liver enzyme was elevated, and had you had any chemo at all prior to this blood test?
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal


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