Starting Folfox on Monday

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khadars
Posts: 13
Joined: Wed May 04, 2016 2:03 pm
Facebook Username: khadar2k1

Re: Starting Folfox on Monday

Postby khadars » Sun May 22, 2016 10:41 pm

Please ask your doctor to add a biologic to kill any remaining cells/cancer in your body.

I would recommend you ask for Avastin (Biologic) as well as a PET scan to see if the stuff is anywhere else in your body.
3/2015 - Rectal Cancer @ 26yr old.
5/2015 - Clinical Trial (FOLFOX Only)
9/2015 - LAR with TME (Stage IIIB, RC) w/ Loop Ileostomy
2/2016 - Ileostomy Reversal
5/2016 - Stage IVb

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elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: Starting Folfox on Monday

Postby elise » Mon May 23, 2016 9:05 am

I had a hard time with FOLFOX :( Managed 5 rounds before the neuropathy started affecting my legs from the knees down.

Some things I remember that I'm glad someone told me ahead of time...

1. after your infusion, my first few bites of food caused a huge cramp in my jaw. really painful. chew and spit. then it's over.
2. cold anything is not in future. enjoy it tonight. I could have room temp on week 2.
3. I wore a scarf and mitts with a tank top. It was 20-25C out and my face would go numb and hands too. My eyes would twitch.
4. microwave your apple for a few seconds and it's good to go. cucumber too! when in doubt, microwave.
5. you can hang your baby bottle from a clothes hanger in your shower to get a quick shower in :)
6. heparin injections into your port can taste like ASS! coffee, sweetish berries, orange or strawberry masks the flavour the best IMO :)
7. if you can taste the pre-packaged saline, ask them to draw fresh saline
8. wear a botton down shirt to chemo

EAT ALL THE ICE CREAM AND POP NOW!

Chin up, especially through day 3-5!

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

Wilson02
Posts: 21
Joined: Wed Feb 24, 2016 1:08 pm

Re: Starting Folfox on Monday

Postby Wilson02 » Tue May 24, 2016 10:59 pm

It is not one of the things I like doing but it is manageable. You will be fine. Sending good thoughts your way.
Stage 3b CC
Diagnosed 05/27/15
Folfox 07/15 to 01/16 12 cycles
CEA at diagnosis (05/15) 18.8
CEA after surgery (05/15) 3.9
CEA 02/08/2016 - 6.8
CEA 03/08/2016 - 7.1
CEA 05/09/2016 - 6.6

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

Re: Starting Folfox on Monday

Postby Noon32316 » Tue May 24, 2016 11:30 pm

Um...friends, does the nausea go away during non-treatment weeks? First day went relatively well. And thanks to all your posts, I felt at ease with the process and knew what to look out for. Cold sensitivity kicked in immediately - washed my hands and felt a blast of ice. When I got home: nausea, jaw pain with first bite, mild tingling in hands and feet, leg muscle ache, headache, and weird right eye twitch. All manageable. What's most bothersome is nausea. I was prescribed Zofran for nausea which totally helped the first day. Today (2nd day), it only toned it down from level 8 to level 6. I've been chugging ginger root tea as well. I don't feel like the rock star I was yesterday and this morning. Steroids wearing off right? I'm still learning to coordinate logistics with Ms. Fanny Pack.
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

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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 » Wed May 25, 2016 1:06 am

Firstly, I am glad you did well with the first round. Usually, the anticipation and the unknown are worse than the chemo itself. From now on, hopefully things will run smoothly now that your plan is in place, and you've gotten your feet wet, so to speak. I have to admit, I had no nausea at any time during my FOLFOX treatment. I consider myself lucky. The tingling in the hands and feet and cold sensitivity generally get worse the more treatments you have. Two years later, I still have neuropathy in my feet, but it has gotten better over time, and the tingling in my finger tips is almost gone. Around the third or fourth round for me, all food began to taste like mud-covered styrofoam. :( Halfway through, I couldn't stand to drink plain water. I was thankful to Pellegrino as I drank it constantly, especially since you need to stay hydrated. Hot tea, hot coffee and soup were Godsends. Hopefully, your symptoms will be light, and each person is different as far as side effects are concerned. Don't look at the five-month calendar. Just stay in the here and now, and the time will go by sooner than you think. All the best moving forward....and keep asking questions here and with your team...and discuss your side effects with your doctor/team before each infusion......One day at a time! ...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 !

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

Re: Starting Folfox on Monday

Postby nomoretacos » Wed May 25, 2016 1:47 am

Noon32316 wrote:Um...friends, does the nausea go away during non-treatment weeks? First day went relatively well. And thanks to all your posts, I felt at ease with the process and knew what to look out for. Cold sensitivity kicked in immediately - washed my hands and felt a blast of ice. When I got home: nausea, jaw pain with first bite, mild tingling in hands and feet, leg muscle ache, headache, and weird right eye twitch. All manageable. What's most bothersome is nausea. I was prescribed Zofran for nausea which totally helped the first day. Today (2nd day), it only toned it down from level 8 to level 6. I've been chugging ginger root tea as well. I don't feel like the rock star I was yesterday and this morning. Steroids wearing off right? I'm still learning to coordinate logistics with Ms. Fanny Pack.


I had nausea at the beginning of my first cycle and it slowly improved and did go away after roughly 4-5 days then I was back to normal and had a good week. The worst part was being completely repulsed by food so i hardly ate during the first few days, even taking the prescribed medication (pramin). So because of that they then gave me an anti nausea drug with my 2nd session which solved all the nausea symptoms but made me severely constipated. Keep doing what you're doing and you'll be right, keep hydrated and try to do some exercise.
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

triordie1994
Posts: 11
Joined: Fri May 06, 2016 1:51 pm

Re: Starting Folfox on Monday

Postby triordie1994 » Wed May 25, 2016 10:06 pm

I get my port tomorrow and will be starting my FOLFOX treatments on Tuesday. We'll have to compare notes.

Good luck and take care.
40 yo w/ wife & 3 children
IMMT 2014
IMC 2015
Dx 03/28/16
R/hemi colec 04/15/16
CRC T3N1MO 05/03/16
Pending FOLFOX 12x 2-weeks w/ 2-day infusions
IM? 201?

Nik Colon

Re: Starting Folfox on Monday

Postby Nik Colon » Wed May 25, 2016 10:13 pm

triordie1994 wrote:I get my port tomorrow and will be starting my FOLFOX treatments on Tuesday. We'll have to compare notes.

Good luck and take care.

Best wishes. Btw, I love my port, sooo happy I have it, makes things much easier (for me anyway) even now (and not on chemo currently) for blood draws, scans, etc. I ask them to access it anywhere they can as my veins suck!

triordie1994
Posts: 11
Joined: Fri May 06, 2016 1:51 pm

Re: Starting Folfox on Monday

Postby triordie1994 » Wed May 25, 2016 10:22 pm

Has anyone tried to exercise, such as biking, during treatments?
40 yo w/ wife & 3 children
IMMT 2014
IMC 2015
Dx 03/28/16
R/hemi colec 04/15/16
CRC T3N1MO 05/03/16
Pending FOLFOX 12x 2-weeks w/ 2-day infusions
IM? 201?

Nik Colon

Re: Starting Folfox on Monday

Postby Nik Colon » Wed May 25, 2016 10:27 pm

triordie1994 wrote:Has anyone tried to exercise, such as biking, during treatments?

Not me, but yes, others here do.

mike218
Posts: 28
Joined: Mon Dec 07, 2015 5:34 pm

Re: Starting Folfox on Monday

Postby mike218 » Thu May 26, 2016 9:22 am

did not see this posted , if you're not keeping up with fluids, and no matter how hard I tried I was not, ask MD for IV fluid bolus with infusion-it seemed to help, esp. over those chemo sessions

Mike
Colon Ca surgery 8/28/14-open laparotomy, hemicolectomy, 1 area 1/23 nodes positive, left hemicolectomy site, 10/34 nodes positive
6 months chemo FolFox (oxyplatin held 2 doses neuropathy
T4aN2b--K-Ras positive
2015 scope April clear
CT 3/2015 no disease some lung nodule
CT 7/15 lung nodules stable
CEA up 10.8 in Sept-CEA 19.3 in Oct.
CT/PET November 11mm left para aortic lymph node
HIPEC? proton therapy?
March 2015 Folfiri /Avastin 6 treatments
can't find tumor
May 2015-CEA rising-waiting on tumor

User avatar
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 » Thu May 26, 2016 11:15 am

While taking chemo, I continued my three-mile walks, even with my portable pump in tow when I had it. There were days after the sixth or seventh round, I skipped, as I was just too tired to go three miles. I would think cycling would be good to continue as long as you didn't get dehydrated.
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 !

triordie1994
Posts: 11
Joined: Fri May 06, 2016 1:51 pm

Re: Starting Folfox on Monday

Postby triordie1994 » Thu May 26, 2016 10:37 pm

I hope you don't mind but I would like to join your thread and contribute my experiences throughout chemo which I will be starting next week.

To start off, today I had my port installed. I think it will be well worth the slight wait to get it. Pretty minor procedure that they did with only local anaesthetic. However I cried throughout. I guess the reality of the circumstance returned. My recovery has gone well and I was getting active again but getting the port installed meant that this shit got real AGAIN. The technologist was great and held and rubbed my hand and wiped away the tears as I wept. She was aware of my situation. I thanked her afterward and she told me her mother was getting treated for her second round of breast cancer. It never seems to end with the people I meet who have had it or are 1 degree from someone who survived, now has it or lost.

Again, sorry for the hijack. I hope you don't mind.
40 yo w/ wife & 3 children
IMMT 2014
IMC 2015
Dx 03/28/16
R/hemi colec 04/15/16
CRC T3N1MO 05/03/16
Pending FOLFOX 12x 2-weeks w/ 2-day infusions
IM? 201?

Nik Colon

Re: Starting Folfox on Monday

Postby Nik Colon » Thu May 26, 2016 10:45 pm

triordie1994 wrote:To start off, today I had my port installed. I think it will be well worth the slight wait to get it.

Wait to get the port or chemo? I started chemo the day after I got my port.

triordie1994
Posts: 11
Joined: Fri May 06, 2016 1:51 pm

Re: Starting Folfox on Monday

Postby triordie1994 » Thu May 26, 2016 10:48 pm

Wait for the port. Pretty isolated where I am and the only Dr. That does it was on holidays last week. Welcome to Canada Eh :shock:
40 yo w/ wife & 3 children
IMMT 2014
IMC 2015
Dx 03/28/16
R/hemi colec 04/15/16
CRC T3N1MO 05/03/16
Pending FOLFOX 12x 2-weeks w/ 2-day infusions
IM? 201?


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