Starting Folfox on Monday

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Noon32316
Posts: 34
Joined: Sun May 08, 2016 11:33 am

Starting Folfox on Monday

Postby Noon32316 » Fri May 20, 2016 6:56 pm

Hello everyone,
I begin my 6 months relationship with Folfox on Monday. I’ve been reading different experiences and tips here and there to mentally prepare for this next step in beating cancer. I wanted to say I really admire all of you for your strength, patience, courage, and humor throughout your fight (hoping some of that will rub off on me as times goes on). It’s been tremendously overwhelming but I’m grateful there’s a space for all of us to share information and commiserate. I'd love to read more stories if you'd like to share. I’m nervous but also relieved, after what seems like an eternity of waiting, to finally begin. No matter how ugly it gets, we’re all hand in hand, heart in heart, mind in mind. And we will win.

“Under the bludgeonings of chance, my head is bloody but unbowed.” (W.E. Henley)
3/16: Dx colon cancer (sigmoid). Age: 36
4/16: PET/CT, Sigmoidectomy, Port installed
5/23/16 to 11/30/16: Folfox - 12 tx, no oxaliplatin for #11 & #12
11/5/16: PET/CT - NED
3/21/17: Colonoscopy = clear
9/27/17: CT scan = pathologically enlarged retroperitoneal lymph nodes - nodal metastases
10/5/17: CT guided needle biopsy
10/13/17: Confirmed - Recurrence

CEA '16 & '17: < 0.5
Original Dx: Stage 3C, T4a, N2b, Grade 3, 16/16 lymph nodes, infiltrating signet-ring cell carcinoma
Lynch negative

CFrancis73
Posts: 24
Joined: Tue May 17, 2016 2:01 pm

Re: Starting Folfox on Monday

Postby CFrancis73 » Fri May 20, 2016 7:11 pm

My Mom just completed 12 rounds of modified FOLFOX 6. I wish you all the best! If you have any questions, i will try to answer the best I can.
Daughter to a 56 yr old Mother
Stage IV signet ring cell rectal cancer
Poorly differentiated
at this time not a candidate for surgery or HIPEC
mets to peritoneum
no CEA numbers ever run on her
KRAS wild type
11/2015 Modified FOLFOX 6
5/2016 completed 12 rounds of FOLFOX 6
CT scan after 4th round, improvement
PET scan 5/2016 showed non activity in all cancer areas but two nodules (1/lung)
but oncologist believe its chemo induced, not concerned at this time
Laparoscopy scheduled 6/28/16

nomoretacos
Posts: 50
Joined: Sun Mar 27, 2016 5:57 pm

Re: Starting Folfox on Monday

Postby nomoretacos » Fri May 20, 2016 7:48 pm

Thought i'd pop my head in and say hi, i'm more of a lurker here. I noticed we have similar stories, in our 30s, stage 3c, sigmoid colon but i'm slightly ahead in that i've done two cycles of Folfox with next week being me third. I was like you wanting to start treatment and get it over with so I know how you feel. For me overall chemo hasn't been all that bad but I guess it's still early days. So yeah, just know theres so many of us going through the same thing right now and you aren't alone, we will win!
03/16 Dx Stage IIIC, sigmoid resection surgery,T3 N2b M0, 7/20 nodes, 4 tumor deposits, CEA 3.7, age 31
04-10/16 Folfox with delays and reductions
10/16 Post chemo CT scan shows two non specific spots (one liver, one lung)
11/16 Port removed
12/16 CEA 0.9
09/17 NED
03/18 NED

Nik Colon

Re: Starting Folfox on Monday

Postby Nik Colon » Fri May 20, 2016 9:31 pm

My tx story link is in my sig. I started on folfox also which you would see in my first posts. Best wishes

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MikeManess
Posts: 86
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: Starting Folfox on Monday

Postby MikeManess » Fri May 20, 2016 10:24 pm

Trying to not hijack your thread, but I had my first round of Folfox today and thought it might be worth sharing with you.

Yesterday (Thursday) I had my port put in. Not too bad, but wish they had knocked me out instead of just numbing the heck out of me. But I survived and the only thing that hurt a bit was the injections to numb my shoulder and neck. It smarted a little, but only lasted a few moments.

My particular chemo cocktail I was given for my first IV rounds were anti-nausea drugs and steroids. Next was iron, because I'm a bit anemic from the tumor. Finally, the Folfox. The Oxaliplatin and Leucovorin were the first of the Folfox cocktail given, and were given together. This took just over 2 hours. Finally, a bolus of 5-FU was given, which took about 15 minutes, then the fanny pack of 5-FU to take over the next couple of days.

Everyone is different, and their response to the various chemo drugs is different. So your mileage may vary (see dealer for details). The effects I have noticed thus far is some fatigue, the beginnings of tingling and numbness in my fingers and a tiny bit in my toes, a brief introduction to bite pain and cold sensitivity in my mouth, and for some strange reason I have muscle weakness in my left hand. It's not a listed side-effect that I could see on quick glance through the papers I have so don't know what's going on there.

I also notice just a slight bit of nausea, but not much. It's sort of like the nausea I get if I get hungry and don't eat.

So I have only 11 more to go - you'll be where I am now Monday evening. So far, it's nothing to be scared of, we knew going in that this isn't KoolAid and there would be some side-effects. Knowing and experiencing are two different things, but I'm happy to be experiencing it because the alternative is something we don't want to experience. So far, it's nothing to be scared of, so don't stress too much this weekend about it.

Take care!
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

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ANDRETEXAS
Posts: 639
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Starting Folfox on Monday

Postby ANDRETEXAS » Sat May 21, 2016 3:42 am

You will do just fine. I am glad I had my FOLFOX during the summer instead of the winter, especially as I had some sensitivity to cold drinks and touching the stainless steel refrigerator. :wink: Just don't get ahead of yourself. Take one round at a time. Discuss any side effects with your doctor each time before you have an infusion. Communication is key. If you have any questions as you go along, there are wonderful people here to answer them. Good luck and hang in there ! Andre
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 !

Nik Colon

Re: Starting Folfox on Monday

Postby Nik Colon » Sat May 21, 2016 4:07 am

Yes, warm weather is far better then starting in the winter trust me it's no fun when it's freezing outside. If you do feel it's too cold ask the nurse if you can take the blanket/sheet home with you I had to at times without thinking about how cold it was going to be outside. Luckily where I went at that time they have valet parking so I could wait inside until the car was pulled up to the door. Starting in January in Minnesota was not all that great I tell ya

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Starting Folfox on Monday

Postby midlifemom » Sat May 21, 2016 11:31 am

MikeManess wrote:Trying to not hijack your thread, but I had my first round of Folfox today and thought it might be worth sharing with you.

Everyone is different, and their response to the various chemo drugs is different. So your mileage may vary (see dealer for details). The effects I have noticed thus far is some fatigue, the beginnings of tingling and numbness in my fingers and a tiny bit in my toes, a brief introduction to bite pain and cold sensitivity in my mouth, and for some strange reason I have muscle weakness in my left hand. It's not a listed side-effect that I could see on quick glance through the papers I have so don't know what's going on there.

Take care!


Mike, muscular issues are a known side effect of oxaliplatin. My left leg would go numb after treatment. This stopped when dose was reduced. Be sure to discuss this muscle weakness with your onc. Pay attention to whether it's getting worse or lasting longer. Best of luck.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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H is for Hawk
Posts: 103
Joined: Wed May 20, 2015 4:51 pm
Location: eastern Pennsylvania

Re: Starting Folfox on Monday

Postby H is for Hawk » Sat May 21, 2016 12:49 pm

Because your pathology report indicated 16/16 lymph nodes were positive, it is very likely you have disease in some other lymph nodes. You might want to consider asking your oncologist to treat you more aggressively, more than standard-of-care, like adding ironotecan to the FOLFOX, which is called FOLFOXIRI. Chemotherapy generally works better with a minimum tumor load, which is where you are right now. Since you are young, you can probably tolerate the additional side effects.
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine

Tim UK
Posts: 76
Joined: Fri Jun 12, 2015 1:05 am

Re: Starting Folfox on Monday

Postby Tim UK » Sat May 21, 2016 5:27 pm

I think you'll find the chemo fine. Watch out for the anti-emetic steroids (e.g.dexamethasone) ... they can make you very hyper then, after a few days, very low and blue. If you're aware of the reasons, it's manageable. If not, can be very disorientating. You might ask your oncologist about avastin. I took it together with folfoxiri, shrunk my liver mets very well. Also, you might want to get a pre-chemo PET scan to make sure there are no mets.

Best of luck.
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy
05/15 Dx st 3 T4N2M0 @43
kids: now 13, 10
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
8/16 progression
10/16-6/18 : NCT02650713
7/18-9/18 : anti-GITR; ERK inhib
10/18-4/19: folfoxiri+avastin
7/19-9/19 enco+cetux+Bini
10-19 starting regonivo

Lee
Posts: 6034
Joined: Sun Apr 16, 2006 4:09 pm

Re: Starting Folfox on Monday

Postby Lee » Sat May 21, 2016 6:10 pm

Good luck with your first infusion. Remember to drink a ton of liquids a day or two prior. You will lose it in those first few days. Avoid getting dehydrated, that could bring on a host of other issues. Drink Ensure as your food will soon taste like cardboard. For me, keeping food in stomach kept nausea at bay. And junk food is better than nothing.

I kept mitts next to freezer to get things out as needed.

Report any reactions to your Onc, sometimes they will increase with each infusion.

You will get through this,

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!

jens22
Posts: 1011
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: Starting Folfox on Monday

Postby jens22 » Sat May 21, 2016 10:16 pm

I think the hardest thing for me was the anticpation of that first treatment. Finally starting to feel well after the surgery and the fears of being sick .....My first infusion was uneventful...I kept awiting for the vommiting and nausea to start.....I was so made that my husband didn't fill my " Just in case Nausea meds" and that he left me alone in the pharmacy to get them after the infusion. I was so sure that something bad was ging to happen when I was alone.....Well...The nausea didn't happen and I got home just fine.

The anticipation is worse than the treatments.

You've got this!!
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 7 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 54 Mom of 3 boys.

NoFear32
Posts: 31
Joined: Mon Feb 15, 2016 11:53 pm

Re: Starting Folfox on Monday

Postby NoFear32 » Sun May 22, 2016 9:23 am

Everyone has given you great advice so far, so I would just say that if you have an overall sensitivity to medications (like I do) ask for as many anti-nausea medications that you can get your hands on. Make sure that you write down and report ANY symptoms and report them to your onc, no matter how weird they might be. And buy some squishy warm comfy socks to keep your feet warm :wink:

I was only able to tolerate 8 rounds of chemo (still considered full treatment) because the side effects were getting really bad, but now that I am 8 months out from my last chemo treatment I can pretty much do all the same things I used to do before. Most people do have some lingering or even permanent damage done by the chemo after they finish treatment, and mine consists of numb feet, fatigue, and joint soreness, but many of these symptoms are slowly improving or becoming more tolerable as time goes on. I never realized how much I loved being healthy and active until I went through chemo and couldn't do the things I wanted to, so it has given me a whole new appreciation for many things in life that I used to take for granted.

Good luck and stay strong!
32 yo,Wife & Mom, ages 9 & 3
4/17/15: Colonoscopy = 6cm in sigmoid + 6 polyps
4/24/15: Colectomy (no illeo)
4/27/15: Diagnosed Stage 3b CC, 2/55 lymph nodes
May2015: Genetic testing, no Lynch, FAP, Gardners
6/1/15: Started FOLFOX - BAD reaction to 5FU, switched rounds 3-8 to combo of XELODA + OXI via IV.
9/24/15: Round 8 and done with chemo!
Nov2015: First CT scan, X-rays, blood = NED
Jan2016: Bloodwork = NED
Next up: Colonoscopy & Endoscopy, more CT scans, etc

Noon32316
Posts: 34
Joined: Sun May 08, 2016 11:33 am

Re: Starting Folfox on Monday

Postby Noon32316 » Sun May 22, 2016 1:36 pm

Many thanks for all the advice and support!! As of this hour, I'm optimistic and hope that feeling will last for a while longer. I'm trying to keep busy by assembling my chemo kit: blanket, mini pillow, notebook, ipad, crackers, water, book - I appreciate ebooks but still love the smell and feel of print books, x?, y?, z?. Also deciding what games will be the most distracting/addicting (candy crush? fruit splash mania? bejeweled? word games?). I don't play much but figured what the hey, might as well make it part of the routine.
Again, thank you for lifting my spirits.
3/16: Dx colon cancer (sigmoid). Age: 36
4/16: PET/CT, Sigmoidectomy, Port installed
5/23/16 to 11/30/16: Folfox - 12 tx, no oxaliplatin for #11 & #12
11/5/16: PET/CT - NED
3/21/17: Colonoscopy = clear
9/27/17: CT scan = pathologically enlarged retroperitoneal lymph nodes - nodal metastases
10/5/17: CT guided needle biopsy
10/13/17: Confirmed - Recurrence

CEA '16 & '17: < 0.5
Original Dx: Stage 3C, T4a, N2b, Grade 3, 16/16 lymph nodes, infiltrating signet-ring cell carcinoma
Lynch negative

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Starting Folfox on Monday

Postby Pita » Sun May 22, 2016 3:21 pm

Something different: might want to try adult coloring book, kit came with 6 pencils, friend bought me 36 pack so I could be creative. Toy Blast is a game I love, very distracting as well as Mahjong3 from the Google store, maybe they have it for iPad. I play Dice for Buddies with my husband on my Android tablet and phone and he's Apple.

Steroid drip made me crazy, poor hubby thought I was going to attack him when he asked me a question. Took 1/2 of Ativan every session after that first episode and I was fine, no more effects.
Good Luck Noon!
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin


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