My treatment ongoing-start 1/20/15

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Nik Colon
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Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

My treatment ongoing-start 1/20/15

Postby Nik Colon » Wed Feb 04, 2015 5:56 am

So I am just going to start with my infusions and not talk about the past crap leading up to it.

First treatment 1/20/15:
Went better than I expected. First symptoms I noticed were the tingles. I also had a few odd eye twitches in the beginning and slight dizziness when I turned my head too fast. Some constipation in the first few days. Oh yeah, the steroids made me a jabber mouth the first Day which in turn made it hard to sleep. Some minor numbness in face in the cold, and the temp jaw pain with the first few bites. Most SE's went away within a day or 2, the tingles lasted a little longer. That's all I can think of right now.

2nd treatment 2/3/15:
Symptoms were a little worse, plus I was stuffy and soar throat from a cold I had for over a week but doc did blood, rapid strep, listened to lungs, etc, and said I should be ok. Infusion went well until right after they stopped it, put the pack on and ready to go. Went to bathroom and had a coughing fit, and not a normal one, hard to explain. Anywhoo I just figured it would get better. right after we left had a MAJOR one. I couldn't get it out, hard breathing, went on and so bad I literally started peeing myself (not just the little dribbles from an occasional cough or sneeze). That freaked me out. For a second I was thinking of going back but calmed myself down. Could barely talk! anywhoo, I have all the previous symptoms. Oh, one new, the drinking cold feeling like mini icicles poking your throat.

That's all I can think of for now, I will update this thread with new info or treatments in the future so it's all in one place.

Take care everyone,
Nik
Last edited by Nik Colon on Sun Jun 07, 2015 4:22 am, edited 2 times in total.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

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jgall
Posts: 814
Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

Re: My treatment ongoing-start 1/20/14

Postby jgall » Wed Feb 04, 2015 8:42 am

Sorry to hear about your experiences, although I guess it's never actually "easy" for anyone - but there are variations.

My husband always had the same issue with the steroids. He got smart and on infusion night he'd take a tylenol PM or other over-the-counter sleep aid and that really, really helped him.

Also, it might be a good idea to check in with your onc about that coughing spell. I'm assuming your on FOLFOX and I don't know if this is the case with that, but with Irinotecan they often give atropine to stop those cholinergic reactions, which is what it sounds like could have happened to you.

good luck with #3.

Julia
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

plastikos
Posts: 273
Joined: Wed Jan 14, 2015 6:09 am

Re: My treatment ongoing-start 1/20/14

Postby plastikos » Wed Feb 04, 2015 9:00 am

Hi. I'm currently on FOLFOX as well (just finished my 4th infusion). Hang in there. The "cold" thing is unfortunately something you have to get used to. Just focus on the end goal which is beating the cancer.
Diagnosed St. IV Colon CA @ 37, male, Kras wild type, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab 12/2016 -> pseudoprogression (?), biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab
Sept 2017 - SIRT

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: My treatment ongoing-start 1/20/14

Postby Nik Colon » Wed Feb 04, 2015 10:33 am

Thx Julia and Plastikos
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: My treatment ongoing-start 1/20/14

Postby KWT » Wed Feb 04, 2015 10:38 am

Buy some bottled water and leave it somewhere warm. For me even room temp was a little uncomfortable. I would suggest the magnesium and calcium premeds if your not already doing them. They really seemed to work for me.

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: My treatment ongoing-start 1/20/14

Postby Nik Colon » Wed Feb 04, 2015 10:55 am

Thx kenny, on calcium and vD, plus just got a big jug of powder mixture with 40% protein cuz I was low on some and other good stuff. it also has 10% magnesium. Others vA, C, D, E, K and a bunch of others. My hub just picked it up, it's plant based, called Vega One, all in one nutritional shake, French Vanilla Flavor, gluten free, no sugar added
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: My treatment ongoing-start 1/20/14

Postby KWT » Wed Feb 04, 2015 11:38 am

On my oxi infusion rounds three and four my calves would spasm so bad I thought I would have to be wheeled out of there. then my legs looked like can of wriggling worms for two days. After surgery I resumed chemo and did the calcium and magnesium and didn't get that at all I had no lasting neuropothy. So it could be coincidence or maybe not.

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MamaN
Posts: 666
Joined: Tue Dec 30, 2014 2:34 am

Re: My treatment ongoing-start 1/20/14

Postby MamaN » Wed Feb 04, 2015 11:39 am

Hi
To help all drinks must be room temp! I remember my first tx they said it would take while for the reaction to cold ,would take a while... Not! Took sip of water, got that same thing like ice shards hitting back of throat! Ugh. So alway drank room temp drinks after that. I don't know if you live in the cold but if you do... Alway wear a scarf over mouth in the cold . I even did it in the grocery store freezer areas too. Hope this helps. The jaw pain was normal for me to first bite syndrome goes away after first few bites.
Dx@45 stage t3 n1b m unknown IIIB
Resected in 8/2010 rectosigmoid
5.5 tumor with 3 /26 lymph nodes
Lymph vascular invasion
Folfox sept 2010 to feb 2011
10 tx only stopped due to low wbc

Kelly M
Posts: 32
Joined: Mon Jan 26, 2015 1:29 pm
Facebook Username: Kelly Morrow
Location: Michigan

Re: My treatment ongoing-start 1/20/14

Postby Kelly M » Wed Feb 04, 2015 12:54 pm

I hope it gets easier and easier for you. Drink only room temp drinks for the first week, then gradually add colder ones.
Mom to 5 boys 43
12/13 colon resection & temp colostomy
1/14 port put in
1/14 started folfox with Avastin 12 cycles
8/14 liver resection
10/14 6 weeks of radiation with Xeloda
11/14 liver ablation
1/15 beginning 12 week cycle of FOLFIRI & Erbitux

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: My treatment ongoing-start 1/20/14

Postby Nik Colon » Wed Feb 04, 2015 1:00 pm

Well, I live in Minnesota, so yeah, it can get pretty damn cold here! And I mean where you can get frostbite in seconds! Not always, but we have the most wacky weather. Could be +30 one day and -30 the next! plus windchill! That alone can tack on another -10/-20. We had one winter not long ago where almost every day in one of the months were below 0
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

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CRguy
Posts: 9287
Joined: Sun Feb 10, 2008 6:00 pm

Re: My treatment ongoing-start 1/20/14

Postby CRguy » Wed Feb 04, 2015 1:10 pm

ritz75 wrote:.......Went to bathroom and had a coughing fit, and not a normal one, hard to explain. Anywhoo I just figured it would get better. right after we left had a MAJOR one. I couldn't get it out, hard breathing, went on and so bad I literally started peeing myself (not just the little dribbles from an occasional cough or sneeze). That freaked me out. For a second I was thinking of going back but calmed myself down.
Nik

Talk to your doc specifically about PLD = pharyngolaryngeal dysesthesia, a very well known oxaliplatin neurotoxic effect.

Check out this topic HERE.

Your docs should be aware of this and warned you about it, but you need to let them know what's going on if you have ANY side effects at all.

Best wishes
CR
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: My treatment ongoing-start 1/20/14

Postby Nik Colon » Wed Feb 04, 2015 3:29 pm

Thx CR, not sure tho as it didn't seem to affect my breathing, only my cough and nerves. I will ask tho since last time I did not have a cold and only tingles and numbness. I just figured my over a week cold! Was affecting it.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

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exaussie
Posts: 610
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
Contact:

Re: My treatment ongoing-start 1/20/14

Postby exaussie » Wed Feb 04, 2015 5:36 pm

Wear gloves also have some indoor and out door ones handy. Pot holder by the fridge so you can grab stuff out. And of course room temp drinks only.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: My treatment ongoing-start 1/20/14

Postby Nik Colon » Wed Feb 04, 2015 5:43 pm

exaussie wrote:Wear gloves also have some indoor and out door ones handy. Pot holder by the fridge so you can grab stuff out. And of course room temp drinks only.

Yep, thx
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: My treatment ongoing-start 1/20/14

Postby Nik Colon » Sun Feb 08, 2015 1:00 am

So, it's Sat. Had 2nd treatment tues, disco thurs. Have strep 2nd dose of anitb. Still feeling a little nausea but not to the point of vomit. Idk, first was told 4 tx then 6. I am about to tell my onc 4 then surgery, not sure what he will say, but if I still am going to have chemo after, why not. this shit sux!
Last edited by Nik Colon on Fri Jul 03, 2015 6:54 pm, edited 2 times in total.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc


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