neutropenia and diet, early in treatment: ugh.

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Jannine
Posts: 60
Joined: Wed Jun 20, 2018 7:46 am

neutropenia and diet, early in treatment: ugh.

Postby Jannine » Fri Jul 13, 2018 8:00 pm

I had my first FOLFOX treatment 3 weeks ago for stage 3 colon cancer. We had a long-planned 2-week vacation planned for the first 2 weeks of July, so we pushed back my 2nd treatment by a week to accommodate that schedule. I went in today for my 2nd FOLFOX infusion and I have neutropenia, so the oncologist wants to wait until next Thursday. That makes almost 4 weeks between my first and 2nd treatment. I guess I'm glad I didn't cut short the vacation only to get home and find out I couldn't get chemo, but ugh. Onc said they would give me Neulasta after all future infusions so this doesn't happen again. She also talked about the ramifications of neutropenia, about making sure we thoroughly cook, peel, or (last resort) wash fruits and veggies, etc. I'm a little nervous about going back to work on Monday at this point, for fear I might catch something. Any suggestions or encouragement for me? I feel fine at this point but man, I don't want to get sick. I need to read up on Neutropenia in the handouts they gave us, too.

The oncologist also told me I need to eat more meat; maybe because I'm slightly anemic? (Which I always have been; I gave up on giving blood years ago because of that and low blood pressure.) I do eat chicken for lunch at work often, but my husband is an ovo-pescetarian(?) -- we eat eggs, milk, plenty of cheese, and fish, but not meat at home. I'm careful to eat lots of high-protein foods, and I frequently eat non-red meat when we eat out and for lunch from the cafeteria at work (I do occasionally eat red meat, but that's once a week max). We were both so surprised by this that we didn't really pull ourselves together enough to ask questions about what she meant exactly, how much, or why. We haven't kept meat in the house for 18 years. I know I should check in with the oncologist or her NP about exactly what she meant, but have any of you gotten a recommendation like this?

Thoughts and reassurances welcome. Thanks.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 (infusion #6)
10/2018: CEA 2.4 (infusion #8)

tminor5
Posts: 16
Joined: Wed Jun 13, 2018 11:46 am

Re: neutropenia and diet, early in treatment: ugh.

Postby tminor5 » Fri Jul 13, 2018 8:26 pm

Sorry to hear the problems you are having. My sister is a Med Tech so she was able to explain a little bit. Neutropenia is your white blood cell count is low. She asked (before I could tell her) if you were anemic also, because of that. The red meat is to raise your red blood count for your hemoglobin. She said to help your hemoglobin or red blood cell count, you need to look for stuff high in iron. She said the chicken doesn’t work like red meat.
DH DX at 46  pT4a,pN1a CEA 1.6
5/25/18 ER suspected bowel obstruction, found infection and diverticulitis
5/27/18 Colonoscopy found colon cancer, couldn't insert stint to do chemo first
5/27/18 Surgery to remove 18" of colon and cancer 1/33 lymph nodes not seen on any near by organs, has colostomy because of infection could reattach after removing tumor
6/25/18 First FOLFOX chemo treatment (12 cycles)

Jannine
Posts: 60
Joined: Wed Jun 20, 2018 7:46 am

Re: neutropenia and diet, early in treatment: ugh.

Postby Jannine » Fri Jul 13, 2018 8:33 pm

Thanks for the quick reply. That does make sense. I'll do some research and see what would be helpful. The funny thing is that we were visiting family and I could have SO EASILY eaten red meat if I'd known it would be helpful...

Oh, in better news, my CEA today is down below 2 for the first time since I was diagnosed. I know it may not stay there and may not say much, but it's nice to see that number get low all the same. It was above 11 when I was diagnosed.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 (infusion #6)
10/2018: CEA 2.4 (infusion #8)

boxhill
Posts: 118
Joined: Fri Apr 06, 2018 11:40 am

Re: neutropenia and diet, early in treatment: ugh.

Postby boxhill » Mon Jul 16, 2018 10:04 am

I had to miss 2 weeks between cycles 3 and 4 of FOLFOX, firt because of low platelets, then because of low neutrophils. I sympathize: it is very frustrating to feel you are not making progress. This last week I had #5, after the normal 2 weeks since #4, so I am back on track, at least for now.

My oncologist cut my oxaliplatin dose by 20% and added a Neulasta shot on pump removal day for rounds 4 and 5. So far so good. My platelets are holding at 130 and my WBC shot up to 7.8 or so after the first shot of Neulasta. (ALL of my counts were below normal before I even started chemo: my earlier WBCs were always around 2.2-2.6)

I've also been anemic, and eating rare steak a couple times in the second week of the cycle on the advice of my NP actually helped that somewhat. I am normally not much of a steak eater. :)
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

teri3
Posts: 386
Joined: Fri Jan 09, 2015 11:03 am

Re: neutropenia and diet, early in treatment: ugh.

Postby teri3 » Mon Jul 16, 2018 10:44 pm

I had trouble with that through out my FOLFOX treatments. They just had me come in the day before and get a shot the day before chemo. I never missed a session.
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

boxhill
Posts: 118
Joined: Fri Apr 06, 2018 11:40 am

Re: neutropenia and diet, early in treatment: ugh.

Postby boxhill » Tue Jul 17, 2018 10:09 am

Teri, get a shot of what?
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

teri3
Posts: 386
Joined: Fri Jan 09, 2015 11:03 am

Re: neutropenia and diet, early in treatment: ugh.

Postby teri3 » Tue Jul 17, 2018 1:48 pm

Sorry chemo brain kicked in lol. Nuepogen (sp) I was good to go after that.
:D
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

User avatar
mobrouser
Posts: 85
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: neutropenia and diet, early in treatment: ugh.

Postby mobrouser » Tue Jul 17, 2018 2:42 pm

I have been struggling with neutrophil and platelet issues since completing infusion #2 at the end of January. Have had 3 two-week delays as a result.

Prior to #8 I was prescribed Grastofil, which is a generic version of Neupogen. Cost is Cdn $150.00 per shot; 35 shots to completion of chemo; I can't imagine what the cost of Neupogen is. I have to inject everyday for 7 days starting 24 hours after I am disconnected from my Fluorouracil. I never thought that a sharps bin would become part of my bedroom decor :roll: . The instructions say to inject into the belly area, but since my belly is full of bruises and lumps from my daily blood thinner shot I have been injecting the Grastofil into my upper thighs. The skin there is less sensitive then the belly so I don't feel the needle go in, however on extremely low platelet days I get much larger bruising than from the blood thinner injections.

I was unaware until I read the paperwork included with each needle that it is processed e-coli in solution that stimulates neutrophil growth. Makes me wonder how they come to discover these things.
I was avoiding eating any Romaine lettuce all winter and part of the spring due to the warnings and recalls of lettuce from Arizona and California due to potential e-coli contamination. Maybe I should have just had the lettuce :P

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

Jannine
Posts: 60
Joined: Wed Jun 20, 2018 7:46 am

Re: neutropenia and diet, early in treatment: ugh.

Postby Jannine » Thu Jul 19, 2018 7:48 pm

Ha! Man, that's wild. My husband looked up the per-shot cost of Neulasta; it's crazy. Hopefully insurance will cover it. So far they've been great. It's just one shot a couple of days after I'm done with infusion. I've never had to inject anything but I think I can handle the Neulasta. They'll show me how to do it on Monday and then I'll do it myself after that. I'm glad it won't be as many shots as you are talking about, Mob. That sounds awful. But doable, if necessary, of course.

Boxhill, thanks for the advice and for your perspective. Eating a couple of steaks in week 2 makes sense and doesn't seem like a lot of trouble to go to. I can always go out and get steak for lunch or dinner. And I eat meat often enough that it shouldn't mess up my digestion.

I was able to get my infusion today! My WBC count had rebounded a lot. The cancer pharmacy was going through renovations so it took longer to get the drugs mixed.

I just had some tingling in the fingertips of my right hand, but it faded after about 30 minutes. Hopefully that's all the neuropathy I'll see for this round... otherwise things look and feel pretty good. My side effects seem no worse than round 1, so far. We'll see how tomorrow goes. My mom made me a carry bag for my 5FU bottle, and it's awesome. :)
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 (infusion #6)
10/2018: CEA 2.4 (infusion #8)

AppleTree
Posts: 231
Joined: Fri Mar 18, 2016 8:16 am

Re: neutropenia and diet, early in treatment: ugh.

Postby AppleTree » Fri Jul 20, 2018 6:23 am

Toward the end of my treatments we went to a 3 week schedule instead of every 2 weeks. My white blood cell counts were always high thanks to Neulasta injection, but my platlets were always too low at the 2 week mark.

I called the Neulasta shot my Robo-shot. The thing automatically knows when to inject you and you barely feel it.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

boxhill
Posts: 118
Joined: Fri Apr 06, 2018 11:40 am

Re: neutropenia and diet, early in treatment: ugh.

Postby boxhill » Fri Jul 20, 2018 3:34 pm

BTW, while we're talking about Neulasta, one night during the first cycle that I had the injection I had terrible pulsing pain in the base of my back and in my breastbone. I was actually scared, I didn't realize that this was the oft-cited bone pain. This time I got it together to take the claritin, and I've had no pain at all. Whew!
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

Jannine
Posts: 60
Joined: Wed Jun 20, 2018 7:46 am

Re: neutropenia and diet, early in treatment: ugh.

Postby Jannine » Fri Jul 20, 2018 6:13 pm

oh wow, thanks for the heads-up. I got worried yesterday that I was already having neuropathy because my fingertips on my right hand started tingling badly, but I'm pretty sure that was just cold sensitivity because it faded after about 30 minutes and hasn't come back. Yesterday I was getting sharp pain from the cooling water on my hands just in the time it took between finishing washing my hands in warm water and getting over to the paper towels on the counter to dry off. So weird!
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod diff.
1 noncontiguous tumor deposit also removed; 0/31 lymph nodes
T3 pN1c M0
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 (infusion #6)
10/2018: CEA 2.4 (infusion #8)


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