5-FU dose reduction after 5 treatments

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Kobe
Posts: 21
Joined: Wed Mar 01, 2017 10:29 am

5-FU dose reduction after 5 treatments

Postby Kobe » Mon Jul 10, 2017 11:45 am

I'm so frustrated. I'm Stage 2bT4aN0MO - my treatment is Leucovorin and 5-FU. The first 5 rounds were okay. HFS started at round 4 and was worse at round 5 especially my hands - its grade 2. They opted to hold chemo a week and test for DPD enzyme mutation. My counts were good - ANC was 1600 and for the first time my hemoglobin was in double digits 10. I was fine holding chemo for a week - it happened a week where I had plans so the week off was a gift.

On a side note I did the 23andme test and DPD variant was not detected. I know that's not definitive but it is interesting.

I went back today and my ANC was 600 - how can that be? Makes no sense to me. It was 1600 a week ago and I didn't have chemo. They couldn't figure out if the DPD test was in process or not. The person who ordered it was on vacation and they knew it was ordered and insurance was contacted but that's all they could tell me. I said I wanted to wait and find out what was happening so if they needed more blood they could do that while I was there. Nope, didn't happen. They said they would let me know the status of test once they figured it out. Regardless of the results they are planning a 20% dose reduction going forward. I wish I had asked if that cuts down on the hours on the pump or if the hours are the same and it runs longer - does anyone know? What are your thoughts or experience with a dose reduction.

I asked about the need for 12 treatments, especially with the newer research suggesting 6 FOLFOX treatments may be enough. They said they didn't know if there were studies that correlated to 5-FU. They said it was up to me if I wanted to stop early. They gave me the line about not having regrets, etc and said I was the patient and ultimately it was my choice. I hate those lines. I find them more frustrating and condescending. I'm feeling very over all of it.

If I make it through 12 treatments, now with a dose reduction, that's it for me. If it ever returns I'm done. I left today feeling very defeated and frustrated - Logically I don't understand the drop in my ANC. I really hate all of this. In my experience no one really has answers or logic and it drives me crazy. So I go back in a week and try again :(

benben
Posts: 84
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: 5-FU dose reduction after 5 treatments

Postby benben » Mon Jul 10, 2017 3:25 pm

Hi Kobe,

I can understand your frustration with ANC.
I had my third treatment delayed 2 days due to low ANC.
I had even had 2 shots of granix and yet had 420 ANC. 2 days later however it was up to 1600 and so I was given the third treatment.
This last time I had zarzio shots as my insurance won't cover more granix, but will zarzio. This time they gave me first shot 8 days after treatment and a second injection day before treatment.
My ANC shot up to 5500. So I received my 4th treatment. Keep in mind I'm on Folfox, so what you're getting + the Oxal. This 4th treatment has certainly been the hardest fatigue wise so far.
I came home saturday after disconnect and slept for 40 hours straight with exception of bathroom breaks, water breaks, and ate 2 times. Still feeling pretty fatigued today but had to drag myself out of bed and into shower
to go see genetic specialist.

Any how, I'm surprised they are not considering a Growth Factor for you to help produce more WBC.

Hang in there. It's not easy for sure. Take your extra days off in stride and try to enjoy them.

best wishes
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 LAR - 8" section removed - 2" rectum/6" sigmoid colon - Straight anastomosis - no temp ostomy.
Pathology - Stage IIIb / 1/28 lymphnodes - well differentiated
5/3 med port install
5/22 folfox - first treatment.
6/6 folfox - second treatment. WBC=ANC 1050 after first treatment.
6/18 & 6/19 Granix shots to boost WBC
6/20 - 3rd treatment delayed WBC-ANC 420

Scheduled
6/22 folfox - 3rd treatment retry - Reducing folfox 10%

Beckster
Posts: 97
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: 5-FU dose reduction after 5 treatments

Postby Beckster » Mon Jul 10, 2017 3:55 pm

Kobe wrote:I'm so frustrated. I'm Stage 2bT4aN0MO - my treatment is Leucovorin and 5-FU. The first 5 rounds were okay. HFS started at round 4 and was worse at round 5 especially my hands - its grade 2. They opted to hold chemo a week and test for DPD enzyme mutation. My counts were good - ANC was 1600 and for the first time my hemoglobin was in double digits 10. I was fine holding chemo for a week - it happened a week where I had plans so the week off was a gift.

I asked about the need for 12 treatments, especially with the newer research suggesting 6 FOLFOX treatments may be enough. They said they didn't know if there were studies that correlated to 5-FU. They said it was up to me if I wanted to stop early. They gave me the line about not having regrets, etc and said I was the patient and ultimately it was my choice. I hate those lines. I find them more frustrating and condescending. I'm feeling very over all of it.

If I make it through 12 treatments, now with a dose reduction, that's it for me. If it ever returns I'm done. I left today feeling very defeated and frustrated - Logically I don't understand the drop in my ANC. I really hate all of this. In my experience no one really has answers or logic and it drives me crazy. So I go back in a week and try again :(


Hi Kobe.... I just finished 8 cycles of Xeloda, the oral version of 5/FU for Stage 2A high risk colon cancer. Usually HFS is more associated with Xeloda than IV 5/FU. I had it bad too...onc reduced my dosage. I could barely walk on my feet by the end of the cycle. Is it possible for you to switch to the oral version? However, once reduced, I was ok.
Hang in there!
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (biopsy from colonoscopy)
TNM: T3N0M0/IIA
Positive lymph nodes: 0 out of 24
Preoperative CEA- 1.9, Pre Chemo 2.5
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan and bloodwork (cea 3.6) NED :)

mozart13
Posts: 48
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: 5-FU dose reduction after 5 treatments

Postby mozart13 » Tue Jul 11, 2017 10:42 am

Thats normal for dose to be reduced. My dose of oxilaplatin got reduced as well to 65%,
Right now on my 6th treatment, neutrophils are down, therapy is still go, was getting 4 injections of gastrofil, will get 7 this time, and if it doesnt work next reduction will be 5fu.
Neuropathy is present since 3rd dose, numbness in feet and fingers.

Not planing of giving up, hang in there, this is not easy road.
Good luck!
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Xeloda 1750 twice a day and Radiation 50 gy finished end of January 2017
Tumor erased, CCR, negative mri, ct, scope, just scar left, no evidence of cancer
W&W approach 8)
April 2017, started folfox 10 rounds, every second week

Kobe
Posts: 21
Joined: Wed Mar 01, 2017 10:29 am

Re: 5-FU dose reduction after 5 treatments

Postby Kobe » Tue Jul 11, 2017 12:42 pm

I'm guessing switching to the oral version won't be a an option since h/f syndrome is usually worse with Xeloda than 5-FU.

Lee
Posts: 4917
Joined: Sun Apr 16, 2006 4:09 pm

Re: 5-FU dose reduction after 5 treatments

Postby Lee » Tue Jul 11, 2017 1:05 pm

Kobe wrote:I

I asked about the need for 12 treatments, especially with the newer research suggesting 6 FOLFOX treatments may be enough. They said they didn't know if there were studies that correlated to 5-FU. They said it was up to me if I wanted to stop early. They gave me the line about not having regrets, etc and said I was the patient and ultimately it was my choice. I hate those lines. I find them more frustrating and condescending. I'm feeling very over all of it. :(


I would be frustrated too. Maybe a new pair of eyes, a 2nd opinion might be a good idea. If you are not being seen at a major cancer treatment center, might be a good choice for a 2nd opinion.

Even if you are being seen at a major cancer treatment center, look for another one for that 2nd opinion.

Good luck,

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!

Beckster
Posts: 97
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: 5-FU dose reduction after 5 treatments

Postby Beckster » Tue Jul 11, 2017 1:24 pm

Kobe wrote:I'm guessing switching to the oral version won't be a an option since h/f syndrome is usually worse with Xeloda than 5-FU.


Yes, but maybe the dr will have a better way of controlling the dosage. Doesn't hurt to ask...
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (biopsy from colonoscopy)
TNM: T3N0M0/IIA
Positive lymph nodes: 0 out of 24
Preoperative CEA- 1.9, Pre Chemo 2.5
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan and bloodwork (cea 3.6) NED :)


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