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neutropenia and diet, early in treatment: ugh.

Posted: Fri Jul 13, 2018 8:00 pm
by Jannine
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.

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

Posted: Fri Jul 13, 2018 8:26 pm
by tminor5
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.

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

Posted: Fri Jul 13, 2018 8:33 pm
by Jannine
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.

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

Posted: Mon Jul 16, 2018 10:04 am
by boxhill
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. :)

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

Posted: Mon Jul 16, 2018 10:44 pm
by teri3
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

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

Posted: Tue Jul 17, 2018 10:09 am
by boxhill
Teri, get a shot of what?

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

Posted: Tue Jul 17, 2018 1:48 pm
by teri3
Sorry chemo brain kicked in lol. Nuepogen (sp) I was good to go after that.
:D

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

Posted: Tue Jul 17, 2018 2:42 pm
by mobrouser
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

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

Posted: Thu Jul 19, 2018 7:48 pm
by Jannine
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. :)

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

Posted: Fri Jul 20, 2018 6:23 am
by AppleTree
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.

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

Posted: Fri Jul 20, 2018 3:34 pm
by boxhill
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!

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

Posted: Fri Jul 20, 2018 6:13 pm
by Jannine
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!