5-FU cumulative side effects?

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benben
Posts: 328
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: 5-FU cumulative side effects?

Postby benben » Tue Jun 06, 2017 7:20 pm

Kobe wrote:Hi,

I'm new to this - just finished my 3rd treatment with 5-FU and Leucovorin. The first treatment was fine and my oncologist said how you react to the 1st one is usually how you react from that point on. I had mild nausea and fatigue but that was basically it. Second treatment about the same. Third wasn't as good - some tingling in my hands and feet, more fatigue, nausea a little worse, some taste changes, and an over feeling of being lightheaded - that feeling has lasted for days. I really hate the pump - it pulls on my port and I really don't like the sound or the feeling when I know the chemo is going in. After the 48 hours I deaccess it myself - that way I don't have to make a second trip to the clinic.

My counts have dropped - after treatment 1 my ANC was 1200 and treatment 2 it was 1000 - the minimum to get chemo. I was disappointed that it's dropping so fast.

I'm curious how others have done. Did your experience from treatment to treatment level out or was it always something different. Was the 3rd treatment the worse - I've had people tell me it is. I'm taking a ton of supplements, seeing a naturopathic oncologist and doing my best to walk every day. I really just want to get through this as quickly as possible.

Thanks for your help


Hi Kobe,

I just got out of infusion #2. My ANC was 1050. This was sad news since it was just after 1 treatment.
My ONC is going to get me into neupogen injections in hopes that it will increase my ANC levels back into normal range. I'm surprised they haven't discussed that option with you.
In chair treatment went very well today for me. Still had to use restroom alot, but had zero neuropathy effects while sitting in chair.
Since coming home I have felt some minor numbness in fingers/hands that lasted a couple minutes, some very mild cold sensitivity when getting some carrots out of fridge to juice, and first bite experience when drinking the carrot/lettuce/apple/ginger juice. I am bummed about low WBC too as I was feeling very good. Interestingly enough last night my son coughed a bit and I asked him if he was getting a cold and he said maybe. This morning he still wasn't feeling well so I shipped him off to my brothers to live while he gets over his cold. Been wiping everything down with antibacterial cloths, re-washing and hot water sanitizing any dish I eat off of. Washing my hands and using antibacterial cream on them pretty much 24/7.
----------------------
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
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: 5-FU cumulative side effects?

Postby Beckster » Tue Jun 06, 2017 8:03 pm

Kobe wrote:Hi,

I'm new to this - just finished my 3rd treatment with 5-FU and Leucovorin. The first treatment was fine and my oncologist said how you react to the 1st one is usually how you react from that point on. I had mild nausea and fatigue but that was basically it. Second treatment about the same. Third wasn't as good - some tingling in my hands and feet, more fatigue, nausea a little worse, some taste changes, and an over feeling of being lightheaded - that feeling has lasted for days. I really hate the pump - it pulls on my port and I really don't like the sound or the feeling when I know the chemo is going in. After the 48 hours I deaccess it myself - that way I don't have to make a second trip to the clinic.

My counts have dropped - after treatment 1 my ANC was 1200 and treatment 2 it was 1000 - the minimum to get chemo. I was disappointed that it's dropping so fast.

I'm curious how others have done. Did your experience from treatment to treatment level out or was it always something different. Was the 3rd treatment the worse - I've had people tell me it is. I'm taking a ton of supplements, seeing a naturopathic oncologist and doing my best to walk every day. I really just want to get through this as quickly as possible.

Thanks for your help


Welcome... I am just finishing 8 cycles of the pill for of 5/FU. Yes side effects are cumulative! My side effects hit on the 2nd cycle. The pill form has side effects of hand/foot syndrome. As my cycles progressed, the side effects were worse, so he lowered my dose. Much better! I did not have tingling in my hands and feet but they turned very dark. My tongue has burned for almost 6 months and sometimes very tired. Talk to your oncologist....I do not know why he would say the first would be like the rest. If you are on just 5/FU, he can change you to the pill form. I will say that by the 6th cycle, side effects leveled out.
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: 5-FU cumulative side effects?

Postby TXLiz » Tue Jun 06, 2017 10:20 pm

On my 3rd or 4th cycle my hands and feet got very itchy and swollen for 4 days.

I feel the treatments got harder from that point.

My "good" days got less and less each time.

At the end, its almost as if there weren't any "good" days.

It was a blur of trying to eat, sleep, and move about slowly.

I wanted to smash the pump with a hammer or throw it off a bridge. The noise it made drove me nuts!

I respect the hell out of chemo for life folks and hope if I become one I can exhibit the same strength and brave attitude.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

Kobe
Posts: 27
Joined: Wed Mar 01, 2017 10:29 am

Re: 5-FU cumulative side effects?

Postby Kobe » Wed Jun 07, 2017 7:30 am

Just finishing #4 of 5-FU today and overall this round has been a little better. My ANC was at 1000 before #3 and it rose to 1300 so I was happy about that. I started taking Marrow Plus supplements - who knows if that's what helped but it seems to have. I do have some tingling in my hands and some peeling. I just got gloves to wear at night so I can put more lotion on. I've been using Castor Oil and its sticky so the gloves help. I would be very happy if this was treatment #12 - not looking forward to more. ...... I spoke too soon. The last several hours on the pump came with increased side effects - especially with my hands. More redness, tingling, pain, and some swelling - not what I was expecting :(


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