5-FU cumulative side effects?

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

5-FU cumulative side effects?

Postby Kobe » Mon May 29, 2017 7:16 am

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

stpio
Posts: 258
Joined: Mon May 26, 2008 6:14 am

Re: 5-FU cumulative side effects?

Postby stpio » Mon May 29, 2017 7:40 am

Dear Kobe,
Although it was ten years ago for me I do recall the 3rd or 4th treatment truly kicking in with full blown side effects. My physician said it was the leucovorin with the most side effects and to be honest it didn't get any easier until the last treatment was over. The tingling and fatigue is very common as well as the nausea. I know how difficult it can be both mentally and physically but you can do this! Please stay positive and accept all of the help from family and friends.
Positive thoughts and prayers!
Last edited by stpio on Fri Jun 02, 2017 5:35 am, edited 1 time in total.
Female
Surgery July 17, 2007 Stage III
1 foot of colon removed near spleen
1/21 positive LN
5FU/Leucovorin/Oxilaplatin for 6 months
Completed chemo January 2008
Stage 1 Breast Cancer 2010/radiation Tamoxifen

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: 5-FU cumulative side effects?

Postby KElizabeth » Mon May 29, 2017 8:24 am

I definitely noticed cumulative effects when I was on Folfox, but not when I was on just 5fu and leukovorin. I have been on 5FU, leukovorin and Iriotecan for 43 treatments and it's the same every treatment. I can actually predict how I will feel on each day of treatment.
Maybe you will level out now and you will have more predictable results going forward.
I wish you the best.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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

Re: 5-FU cumulative side effects?

Postby Kobe » Mon May 29, 2017 8:46 am

43 treatments!

RichieTheK
Posts: 13
Joined: Mon May 29, 2017 11:27 am

Re: 5-FU cumulative side effects?

Postby RichieTheK » Mon May 29, 2017 12:02 pm

I've been on FOLFIRI for almost a year. I find that the side-effects that I experienced leveled out after the first few sessions. I really have not noticed any cumulative effects, but I do not experience that many side-effects at all.

I can sympathize with your attitude toward the 5-FU pump. I've named mine "The Albatross". I solved the problem with it tugging at my port by buying a roll of 1 inch medical tape from my pharmacy and taping the feed line to my side. (I actually tape the connector between the port-access line and the pump-line to my side. Whatever works for you.) It acts as a strain relief. I may feel tugging on my skin, but that tells me that the feed line may be snagged on something.

Best of luck to you, Richie the K
DX 5/13/2016 (Friday the 13th) mRCa Stage 4b
Met Liver, Lungs, Spine
mut KRAS G12V
mut PIK3CA
MSS
5/15/2016 Tumor partially obstructive; colostomy performed
5/2016 FOLFIRI with higher dose of Irinotecan
8/2017 Signs of tumor growth, added Avastin to FOLFIRI
4/16/2018 Primary tumor invading surrounding tissue. Chemo stopped
5/2018 Started radiation.
6/2018 Radiation finished
7/2018 Start FOLFOX
1/2019 FOLFOX canceled due to neuropathy after 14 cycles.
Maintenance, 5FU and Avastin
6/2019 FOLFIRI

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: 5-FU cumulative side effects?

Postby mhf1986 » Mon May 29, 2017 2:22 pm

You mentioned that you don't like the sound of the pump...can you get the "baby bottle" kind that works based on heat of your skin? Absolutely no noise at all as there is no pump motor. Just tape the little sensor to your waist. DH uses that.

DH is going off the OX tomorrow and will just be on the 5FU/Leucovorin/Avastin until we have to add to IRI in at some point. His hands and feet are numb and no longer recover during treatment. He's done 6 months (12 treatments).

Melissa
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

mozart13
Posts: 158
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: 5-FU cumulative side effects?

Postby mozart13 » Mon May 29, 2017 2:31 pm

Tommorow is my 4th treatment, I hate it literally, on folfox, it takes 5,6 days to recover, weak, tired, sensitive hands, feet, no nausea, appetite is good, my blod results were so depleted, gave myself injection of Grastofil. X3, hpoefully things will look better tommorow.
Its not eassy, but there is no other way.
I am on the pump for couple of days, no sound, its under pressure, so it empties itself over 46 hours.
Good luck!
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Felicitym23
Posts: 32
Joined: Sun Jan 24, 2016 2:37 am
Facebook Username: Felicity Malyszko

Re: 5-FU cumulative side effects?

Postby Felicitym23 » Mon May 29, 2017 10:46 pm

I have had over 35 sessions of 5FU.

It gets worse the longer you are on it. I am not surprised a Dr would say that your first dose is how you are going to be. :roll:
I ended up in hospital several times because my body just got tired from the 5FU.
I had to have a break after every 5th cycle. I also had the baby bottle for the 3 days at home, after my in hospital treatment.

All I can suggest is to get as much help as you can from family at home. Rest and then rest some more.

And count those days down until the end of treatment.
47yrs and mother to a 12 year child with autism
Cancer confirmed 9/23/15
Ext right hemicolectomy 10/13/15
35 Lymph nodes & 6 cancer told Stage 3C.
Nov 15 Oxy, Leucovorin, Flurourcil
CT and PET Scan told that cancer was now in abdo & neck lymph nodes.
STAGE 4 told two days before Christmas 2015.
Oxy, Leucovorin, Flurourcil & Panitumumab
MARCH 2016 NED - currently in remission. Stage 4.
After 3 sessions of Vectibux.
PET & CT SCAN July 16 - Still NED but still on chemo and Vectibix.

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: 5-FU cumulative side effects?

Postby Steph20021 » Tue May 30, 2017 2:01 am

Kobe, as has been said above already, I found counting down the treatments helped me too. I just put my head down and sort of charged through so to speak during those first 6 months of treatment. The fatigue and neuropathy were the things that increased for me as time on treatment went on. I pictured the weather and the season six months out, made plans for that time and thought about how I'd celebrate etc.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

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

Re: 5-FU cumulative side effects?

Postby Kobe » Tue May 30, 2017 8:16 am

It seems like some people are fine on 5FU and the side effects are minimal but unfortunately its not predictable and different for everyone. I'm curious - did you have to delay treatments or do a dose reduction because your ANC was too low? How about hair loss - 3 treatments done and I'm losing some but its not awful.

I have great respect for those of you who have had treatments in the 30-40 range. I'm struggling thinking about getting through 9 more.

LisaMargo
Posts: 21
Joined: Sun Feb 26, 2017 10:26 pm

Re: 5-FU cumulative side effects?

Postby LisaMargo » Wed May 31, 2017 4:02 am

Hi Kobe, I started my 5th round of FOLFOX today. I noticed the symptoms much more pronounced & tingling started straight away. It is winter here so that exacerbated the side effects I think. Previous rounds only noticed when I touch or eat/drink something cold.
I am still working full time ( I have to ) but I notice I am getting more tired.. I had long naps on Sunday, slept 3 hours at the hospital today. I had my 3rd round postponed a week then only 90% oxy due to low blood counts. Was weird because I felt ok.

Chemo is no fun & not sure how I will get through the rest of the treatments but I'm just putting my head down & keep taking one day at a time. Celebrating the small milestones ( I'm nearly half way!) Making sure I plan fun things to do for my good weeks really helps me.
I had a lovely thick mop of wavy hair. A sad raggedy thin mop now.
I too am in awe of the number of treatments others have done.

Hang in there
X
LM
20 feb 17 Went in for a colonoscopy, woke up with cancer
21 feb 17 LAR descending colon, Stage 3c
27 mar 17 port in
29 mar 17: 12 sessions FOLFOX.
51 yo F, married with 3 teenage girls

JudiB
Posts: 71
Joined: Sun Mar 05, 2017 5:30 am

Re: 5-FU cumulative side effects?

Postby JudiB » Wed May 31, 2017 4:13 am

I started on Folfox with the oxaliplatine for the first 4 treatments, but have now had 3 treatments with just the 5FU and leucovorin. As the side effects of the oxi were so horrible, I was just relieved to see the back of it and felt the side effects drastically diminished.
However, now I can feel some effects from the 5FU with tingly fingers...although nothing like as bad as the neuropathy with the oxi, but they are building with each treatment. My fingers also feel greasy and slippery and I've lost my fingerprints! The nausea is much better without the oxi and this is well controlled with the range if medication given, although I had a day of vomitting yesterday but that's unusual!
I have also lost most if my hair, but with a new wig and lots of scarves...in the scale of things, maybe it's a price worth paying to beat this thing?

I think you do sort of get used to all this stuff as time goes on. I sooo appreciate the good days and try to make the most of them because you never know how you'll feel tomorrow! I think I appreciate so many if the things I used to take for granted and see life and all that it offers in a far more positive way now!

Re-the pump...like you I hated it for the first few treatments, but we are now friends! I have worked out how we can live together more harmoniously.... I unwind the tube at night time and hang the bag on the bedpost. This gives me more flexibilty of movement and I never catch it and pull on the port now. I no longer notice it's music! During the day, I bring the tube down under my clothes and out at the bottom. The sack then hangs on my shoulder... I have to pull it up from time to time but it works ok! I even manage to muck out the stable and clean the paddocks...it doesn't hinder me much now that we are friends!

Overall, this whole journey is tough, it takes everything we have to stay positive but I believe that trying to keep positive really helps.
This forum reminds me that I'm not alone and whenever I feel very down, the forum is my port of call...so many folks following the same or similar journeys and lots who give reassurance as they have come through the other end. Even those who are really sick still manage to cheer us newbies up as they offer advice and ideas.
So... I truly hope that your side effects don't get any worse and...most if all that you are able to become friends with your pump...after all it's zapping any cancer cells floating around!
Love and hugs
Xxxx
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started. Oxaliplatin for 4 treatments, then just 5 FU and Leucovorin for remaining 8 treatments.
June 2017 clear scan
Last chemo August 2017
August 2017 clear scan
February 2018 clear scan

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: 5-FU cumulative side effects?

Postby Ron50 » Wed May 31, 2017 7:05 am

I had 5fu infusions every Tuesday for 48 weeks. That was nearly twenty years ago. One of the most noticeable side effects was that the veins in the back of my hands right up to my shoulders turned dark brown , almost black . It took them six months after chemo to fade. I was extremely lucky that my blood counts did not drop at all the whole time I was on chemo. Between the 5fu and levamisole I felt mighty unwell for a year. I never had any platinum drugs but I still have neurologist dxed peripheral neuropathy and they suspect my congestive heart failure may also be chemo related. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Brearmstrong
Posts: 112
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: 5-FU cumulative side effects?

Postby Brearmstrong » Wed May 31, 2017 7:16 am

LisaMargo,

I could write the exact same response as you. We are chemo twins! I'm currently wearing the pump for my 4th session. Oxy and 5FU reduced because of very low white blood cells even with the shots and delaying treatment by one week each time. Hands way worse this time and almost constant! UGH almost 1/2 way done!!
50 F diag 1/17
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Nov 17 PET p aortic nodes Stage IV
Folfori w/avastin
May 18 surgery on nodes xeloda 2yr
Aug 18-May 20 NED
July 20 hysterectomy
July 21 vats right lung
Clinical trial- failed liver Mets biopsy shows now poorly differentiated carcinoma.
HAI pump at MSK may 2022
Nov met to pancreas- causing pain
Radiation ablation to pancreas Dec 22
New lung Mets watch and wait

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: 5-FU cumulative side effects?

Postby Basil » Wed May 31, 2017 7:51 pm

Fellow traveler checking in. Had round five FOLFOX today and am sporting the 5Fu pump that I really fucking hate. I have low platelet count (75) but everything else is in the clear. My symptoms have not been horrible but the neuropathy, fatigue and nausea have been creeping past seven days now. Onc said younger patients often have extended symptoms folfox.

Good news is the clinical signs indicate it is working. I'm taking six rounds of FOLFOX in lieu of radiation and sometime between rounds 3 and 4 my bowel function returned to normal - which I haven't had in years. Been 4-6 weeks since I've had any blood in stool. Doc said the effectiveness of chemo in killing the tumor indicates I'm responding well and should have similar response on the adjutant side.

So everyone hang in there and keep on putting putting up with the chemo.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)


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