CEA Levels

[Rikimaroo]

Well my hair is officially falling out all over the place. this didn't happen much on FOLFOX. It thinned mostly. I guess I will keep it on and not shave it off yet. I have 2 more treatments. Pyro (The devil's lettuce is hilarious)...

I don't really care at this point regarding hair, I just want to get cured. Cancer can be so depressing and I have my moments. Mostly though I stay positive.

Rikimaroo

[Punky44]

Hang in there! My mom’s hair seemed to start thinning after FOLFOX and kept doing it two months out so we finally just got a wig and it was the best decision ever.

[stu]

You are a good responder to treatment so I am holding out for significant shrinkage and your treatment plan to be put into place .

My mum had hair thinning . I noticed a rather thin area still in the mix the other day . Got a bit creative !!

I don’t blame you for feeling down , you are only human .

Take care,
Stu

[Rikimaroo]

Thanks guys. I am doing FOLFIRI not FOLFOX, but when on FOLFOX my hair thinned. FOLFIRI makes you actually lose a lot of hair, possibly all. Yes I am responding to the treatment, but it makes me very sad that I am going through this again, even though I know people have been through and got cured. So reading some of the posts on here have helped a lot. One of the nice things is I am doing more juicing, I had celery juice with a granny smith apple this morning and eating some sprouts raw. More greens.

[Caat55]

Rikki,
Glad to see your numbers are turning back down. I can't imagine the frustration of tackling this again. Heading into my reversal on Thursday. Wishing you good luck with final doses.
S

[Rikimaroo]

Caat,

Good luck on your reversal. With all the stress of recurrence dealing with unpredictable bathroom runs it’s been quite stressful. Sometimes I wish I had my bag back because it was easy and I can do anything.

Now I feel tied to the bathroom and am afraid to go anywhere worrying I will be stuck in the bathroom for 30-40 minutes.

I am sure it gets better after couple years. I have pooped myself as well. It’s been about 6 months since reversal so it’s still fairly new. I don’t want to get my bag back but if it makes my life less miserable I would. Let’s see how the rest of this year goes.

[Rikimaroo]

Rikki,
Glad to see your numbers are turning back down. I can't imagine the frustration of tackling this again. Heading into my reversal on Thursday. Wishing you good luck with final doses.
S

How is your reversal surgery and how are you doing?

[Caat55]

Rikki,
Glad to see your numbers are turning back down. I can't imagine the frustration of tackling this again. Heading into my reversal on Thursday. Wishing you good luck with final doses.
S

How is your reversal surgery and how are you doing?

Home four days now. Early hours of morning are bad, 5 to 7 trips. Day times easy so that’s good. Stopped most pain meds, came home with gabapentine and Tylenol . Did take two Tylenol at 2 a.m., helped with bum pain. I am walking a bunch about 7000 steps. Swelling in belly is down. Wound looks okay, covered with just gauze so doesn’t catch on clothes.

What about your numbers, scans ?
Susan

[Rikimaroo]

My cea is now 8 from 16, from 22..so the chemo is working. It is hard doing chemo, sometimes I just want to give up. One more treatment on May 1st then I will schedule scan (PET) to see what the next steps are. I really need to cure this thing.

Chemo really causes your butt (anus) to not heal after pooping so I get some butt burn from that. Been having some decent blow outs, which is good, therefore I only go 4-5 times a day. Or sometimes 2 if god willing.

[Caat55]

Chemo is awful in many ways. I noticed my irradiated skin got bad during it, must be awful for you.
Hold tight, you are almost through it. We are all praying for you.
S

[susie0915]

I had my reversal before doing chemo due to a blockage 4 weeks after my resection. Surgeon had to do surgery to remove scar tissue so reversed my ileo at the same time. It did make it difficult during chemo with loose stools. My oncologist to prescribe cholestyramine which did help along with immodium and lomotil on bad days. It is a powder you can put in juice or water. It is used for high cholesterol but works for diarrhea as well. May be worth trying. Good to hear your CEA levels are coming down.