Xeliri-hair loss-cramps

msccolon said:

I am sorry you are having such a hard time
I was surprised how difficult losing my hair was as well. It does get better, you get used to the look, although I never did like it. The first time I did wigs, the second and third times I just knitted and crocheted a bunch of hats and used those mostly. They have hair pieces you can buy as well to wear under the hats which are more comfortable than a full wig. Of course, with winter coming up, the wig will keep your head warm! Make sure you get a nice soft hat to wear at night, you will be surprised how cold your head will get! As far as the stomach cramping, tell your nurse next time you go in, they'll have something to give you and I THINK it's atropine, but I don't remember. Sandostatin is a once a month shot that helps tremendously as well; do you get diarrhea with the cramps? I pray you get to feeling better soon!
mary

Atropine
Your right, Mary

Atropine will help the cramps.

-c

I've only had one tx of FOLFIRI
Almost the same as XELIRI - just 5-FU instead of Xeloda. I'm also on Avastin.

I lost about 9/10 of my hair on FOLFOX. FOLFOX was a complete nightmare for me. While FOLFIRI w/Avastin first round wasn't a picnic, for me I'd take it over FOLFOX any day. It did really wipe out my white count though - I had an extra week off due to personal scheduling, and then even with 3 weeks since the last cycle my white counts were too low to get my 2nd tx last Thursday. I'm hoping to get it this week.

I have lost about 2/3 of my hair already, it didn't take a second cycle to make that happen - around day 15 or so it started falling out heavily. I don't expect to have hair left by the end of the month. But I'm ok with that. Compared to the rest of the crap I've been through, losing my hair is minimal. I'm sure at some point or some days it will bother me more, but so far not so much. And to think my first worries when I was told I needed chemo were about not being able to travel to my home in Mexico and losing my hair. I wasn't concerned with anything else. I had long hair my entire life - until a month ago when I got it cut short (because even though my hair was growing back nicely after FOLFOX, I had so little long hair left that it was silly - I had a tiny ponytail or bun). Now that I've gotten through a short hair cut, I'm ready for it to all fall out.

I got BAD stomach pains first tx. Not really cramps, but awful pain that lasted anywhere from 30 seconds to an hour. I'm debating about trying the shots to help with this on infusion day, but it also is to stop the diarrhea. I was very constipated the first week, so I'm afraid that might make it even worse. I got bad diarrhea that I couldn't control with Imodium the second week. But Lomatil was a miracle drug for me - one little pill and that was the end of the diarrhea.

The good news - after just ONE tx of FOLFIRI w/Avastin, my CEA was cut in half from 12 to 5.7! I hope you get good results like this too! Then it makes it all worth it - hair loss, stomach cramps - a small price to pay if it kills the cancer.

I hope your wig comes soon, so you can feel more comfortable. I have one that a friend sent me. I look good in hats (awful in glasses), so I'm looking forward to maybe having a little fun with hats or scarves too. Change is scary, but often it can turn out to be fun. A breast cancer survivor told me about a wig shop near me that has cheap synthetic wigs for around $30. She'd buy one and wear it for a month, then toss it and get another. Now that I know what I look like with short hair, and will soon know what I look like with a bald head, it might be fun to find out what I'd look like as a redhead or brunette too!

My son who just turned 16 is impatient for my hair to completely fall out. He wants me to shave it now - because he is shaving his with me. I told him I want to hang on to it as long as I can, but we'll be shaving soon. And he's thinking of asking the entire sophomore basketball team to shave their heads too. A few of them keep it quite short like my son, so it wouldn't be a big deal. But a few have longer hair and it would be a big sacrifice. Some of the sophomores will make the JV team this year (maybe my son too), so we might even get the JV team to shave. If that happens, I wouldn't be surprised to see the freshman and varsity do it too! Now that could be fun! I don't expect my two daughters (21 and 24) to shave their heads. The oldest cut off her very long thick hair for me last year in case I lost mine. But the only person I found to make it into a wig wanted $500 (telling me that is half price). We don't have that kind of money for me to spend on a wig. Too bad, as her hair is just like mine was in my 20's. It would take me back a few years! I'm still looking for a way to get it done cheaper. A year later she has long hair again - 1/2 way down her back. My other daughter has very long thick hair too, and has never had hair shorter than a little past her shoulders. My son who is a freshman in college probably won't shave his - he knows his years of having hair are very limited due to looking at my father, uncles, brother, and his father. Right now he still has very thick curly hair that he likes.

While your 15-yr-old daughter might be a little shocked now, this is a good lesson for her. She can see that looks (hairstyle and whatever else) really do NOT make the person. You are you, with or without hair. And having mom still here with her without hair is a heck of a lot better than the alternative!

C Dixon said:

Cramps
My doc gave me Levsin for the cramps and it works. They were very sporadic for me but boy did they take my breath away when they paid a visit. Ask your doc for that and carry it with you whereever you go.

Catherine

Levsin
definitely works for the intestinal cramps, never thought of it for stomach cramps. It works like a champ for intestinal cramps, when the diarrhea gets really bad and lomotil just isn't cutting it!
mary

Brenda
I am so sorry you are having trouble with Xeliri. I am glad they are figuring out the anti-nausea meds. With regards to the hair loss, you may find that just as you are getting used to the loss, it starts growing back in. That is what happened to me. I lost most of my hair, had my daughter cut the rest very short, + low + behold it started growing in. It is now a not-bad length though still short. My hair was always soft, but now it is super soft. People love touching it - my kids, husband, Mom + even a few men in the neighbourhood. I decided to have fun with it. My kids have been totally okay with it - I tried to show them I was okay with it + I think it has worked. We make jokes all the time about it. Yes it is annoying to lose it but having fun with it has really helped me. I have a beautiful wig, which I have never worn. Somehow I felt more comfortable with hats + scarves. And surprisingly, although I am challenged when it comes to hair, scarves, etc, I received compliments from complete strangers on how nice my scarves looked. I wore nice bright colours. For months now I haven't worn anything on my head. Even my 4 + 6 year old nieces were more curious than anything when they first saw me with almost no hair. The 4 year old once said to me "Remember last year when you had long hair?" I said, "Yeah, I remember". Kids are really accepting,they just need to know you are okay with it.

Yesterday tx#2
Yesterday I got Atropine 1/2 way through the Irinotecan infusion. It helped a lot with my stomach pain. It also helped with the nausea and severe salivation I was having. This cycle has been much harder than the first for me. About 1/2 way through the drug, my head felt like it was swelling and would explode, I started severe stomach pains, and awful salivation. The Atropine helped it all. It made my mouth so dry I couldn't swallow for a while because there was nothing to swallow. At first I kind of freaked out - it was that severely dry. But I prefer that to the constant swallowing (and drooling when I sleep), and the nausea it causes, and the gas and belching it causes.

Ask for Atropine with your next infusion. It is supposed to help with the diarrhea and cramping some people get on infusion day. They told me that even though I don't get the diarrhea till much later in the cycle, and I describe my pain as pains, not necessarily cramping, it is all related, and the Atropine helps.

I am going to call today to see if there is anything I can take at home to help with the stomach pain and the excess saliva. (I remember the saliva issue from my pregancies with severe hyperemisis - I'd forgotten how awful that was until now.)

I hope your third tx goes better for you.