Folfox starts Thursday and CEA

janh_in_ontario

So I start 6 rounds of Folfox on Thursday. PICC insertion Tuesday and bloodwork/consult Wednesday and chemo round 1 starts on Thursday.

Haven’t had the “side effect” discussion yet but I have seen some discussions here. Any advice?

Dr says my hair will get thinner but I won’t lose it - is that your experience?

CEA is 65.2 ug/l - what does that mean? Seems too high to be a real number?

I am taking first bag in clinic and then home to run for 46 hours. I have no idea what that will entail - am I lying in bed all that time?

I appreciate the advice, knowing I am a statistic of One and we all experience things differently.

hugs

jan

NewHere

Sorry you are here, but welcome to the boards. Lots of great people here.

I had FOLFOX (12 Rounds) in 2015. Even at that time there was research about dropping to 6 and other countries outside U.S. - Japan at the time IIRC - were doing 6.

On CEA

CEA is short for carcinoembryonic antigen. It is a tumor marker often associated with colon cancer and some other cancers.

Couple of things to keep in mind:

a.) CEA can be measured on different scales (or really reported) , so sometimes a number seems really large compared to others you will see for people. In other words, I may say my CEA is 3, while you are told you have a CEA of 3000. It may be the same number, just expressed differently.

b.) Things other than cancer can drive up the CEA, including infections and smoking. So an increase in CEA may be due to something other than cancer being active.

c.) Along point B, CEA can go up when chemotherapy is working - as cancer is getting knocked up, it may increase. (There are studies discussing how CEA increases/patterns are part of prognosis)

d.) For many people CEA does not seem to be a reliable indication of cancer activity. So try not to worry too much. (For me, after 7 years, it really good marker for me.)

I lost more hair, eye lashes, eyebrows thinned. Other people skate by. Neuropathy is a big one. Numbness in hand and feet, really keep on top of that one and let your doctor know. Cold sensitivity- touching the fridge hurt/burned. Cold food/drinks etc cause the same thing. I had nausea but never threw up. The first week of each two week cycle was when it was more pronounced, really nothing the second week. The occasional anti nausea pill and crackers pretty much took care of it. Also had shift in taste. Things I loved, I could not eat. (Love them again :)) Pretty much everything else that are listed as possible side effects I had once and minor during treatment. Was so strange. LOL. As an aside, if you go to the dentist you may need antibiotics. (I need them because I have had a port the entire time.)

On the pump I would do things. I have had 57 rounds of chemo (various types) and 7 years in, so I am a bit more tired than I was :) But the three days on the pump I would walk and do normal things. By session 12 I may have been more tired, it is cumulative, but was not bad. (My second chemo was FOLFORI which is some of the same stuff. At the beginning I would do a couple hours walk on the treadmill, 24 treatments in, no so much :))

Just be careful not to overheat - it causes the chemo to be released too quickly. But easy walk should not be an issue.

Yup on stats things. Try not to get caught up in it. I am Stage IV, cancer everywhere. Stats say 10% of people make it past 5 years. Yesterday was year 7 from me reading the report saying I had cancer. Biopsy was a couple weeks away. I did 9 miles on the bike trainer yesterday and a 2 mile treadmill run. Try to keep moving when you can. But also it is fine on days to binge TV if you are tired or the bottle is hooked up and you just want to spoil yourself a bit.

You are entitled to :)

Here is another thread with some thoughts I gave to someone who just joined.

https://csn.cancer.org/discussion/324623/hi-new-here#latest

SnapDragon2

Natural folates are good. Folic acid is bad, toxic to you.

Stay hydrated.

Good moisturizer for hands and feet.

Research here for more info on things that help.