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feeling lousy & had colorectal spec. appt yesterday- better now

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

Just whining a bit- frustrated that the Xeloda hits me so hard lately with the hand/foot syndrome. I have also had a headache and am tired, achy, and basically feel like crap. What a weekend for it too- I had my 10 yr old go to her school carnival last night with her friend's family (my husband had to work late, then didn't want to go without me). We skipped the church harvest party, which was 1-5 today, and I guess my hubby will have to take her out trick or treating himself tomorrow. Bummer. I skipped taking the Xeloda dose last night and this morning because I was in such agony. Finally at 4:00 today, after skipping two doses, I'm able to sit and type and actually move my hands. But I know I can't skip any more- my two weeks of taking it will finish up Thursday morning. Last night, not only did it feel like acid had been poured on my hands and feet, but I also kept getting stabbing pains like someone was jabbing me with needles. Even with cushy socks and slippers on, I can only take steps very slowly
I take 3,000 mg/day- 1500 in a.m. and again in p.m. I may need talk to the onc about reducing the dose a bit, I guess.
I had an appt for a rectal exam with the colorectal specialist yesterday. She said she does feel a small nodule just above the anal sphincter. She estimated it's just a 1/2 cm. She said it could be scar tissue, but likely not. Not a surprise to me- that's why I went to see her. I've had mixed info over the past year on whether I actually have a rectal tumor recurrence or not. The PET scans light up there, but I'm told it could also light up for scar tissue or inflammation of any type. My colonoscopy and biopsy 10 months ago (just after my PET then lit up in the rectum)showed negative for any cancer. But, that was 10 months ago. The dr. wants to wait for my scan results next week (Thurs Nov 4th). If it doesn't show anything conclusive, then she wants me to have a sigmoidoscopy with ultrasound to check things out more carefully and make sure that there isn't anything on the outside of the colon/rectum. If there isn't, then she will recommend that I have a transanal excision, simply removing the nodule and surrounding margins from the inside without doing a whole resection and ileostomy. She will also talk to my onc and see what he thinks. The concern is that I'd have to stop chemo for a bit to have it done. When my CEA goes up after missing just 2 wks of chemo while on vacation recently, I definitely would not feel comfortable being off of it for several weeks. I asked her about getting cyberknife on it instead of surgically removing it, hence I then wouldn't need to stop the chemo if I got cyberknife. She said we can look into that, but said that the cyberknife people usually don't like to do it when the nodule/tumor is inside the rectum because it would be more likely to cause ongoing issues. She said it would be better to do cyberknife if it were on the outside of the colon or rectum, not inside.
Don't know what to do- I hate how I feel on chemo, so I'd actually welcome a break from it. I guess I won't worry about it- I'll just wait and see how the scan comes out and where we go from there.
I know I'll feel better physically in a few more days when I get to my week off from Xeloda, but right now it's hard to remember that. I think I need to go lie down- I'm starting to shiver and head is pounding.
Hugs to all,

Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

Lisa,

I am sorry you are feeling so lousy. If it is any consolation at all, I still haven't "bounced back" from my last chemo treatment 9 days ago. I feel exhausted + have had sore ears. I am using ear drops but if it is not better by tomorrow I am going to a walk-in clinic.

It is really hard to miss out on events because we are not feeling well, but sometimes that has to be. I have been in awe of you + how much you accomplish.

I am really glad that if there is a recurrance in the rectum it is so small - ~1/2 cm is very small. You really do your due diligence every step of the way with this beast, I really admire that.

I hope you feel better soon!

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Lisa, so sorry you are feeling so out of it! It must be difficult being "mom" and doing treatment. You are in my prayers. I admire how you keep plugging along! It will be so worth it someday soon! I have been going to SF every week and won't have scans until after cycle 2 of this trial. I know the chances are remote, but we just have to keep fighting! Now my heart is giving me some issues, or at least giving the docs some issues, as I feel good. Anyway, reading your post makes me ashamed of my whinning! Hang in there girl! Jean

Jaylo969
Posts: 827
Joined: Jan 2010

Hey Lisa. So sorry your are feeling so awful.My heart goes out to you.

I remember when my onc changed me from Folfox to just 'plain ol' Xeloda'(3,300 mg) to try & stop the neuropathy damage. I felt so disappointed because I was thinking that I had to go off the preferred drug to something not much better than an aspirin...WRONG! That Xeloda hit me like a Mack truck and after 4 rounds of it I was drained, totally & completely drained!She reduced and reduced and finally we stopped after 9 rounds of chemo.
I hope that a slight Xeloda reduction will help you get a little energy back.

Keep us posted and try to hang in there.

-Pat

sasjourney
Posts: 395
Joined: Jul 2010

Hi Lisa,

I am so sorry to hear how bad you are feeling. If there is anything at all that I can do for you, please let me know. I am only an hour away and I really want to help you in any way I can. Please take care and get some rest...you will feel better soon. As always, you are in my prayers. I will call you next week to see how you are doing.

Take care my friend,

Sara

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Sara,

Thank you for your sweet offer. Probably not much I need from you right now, other than a nice phone conversation would be nice! I do, fortunately, have people around who can help with kid stuff, driving to and from school if I need it, etc.
Hope you're doing well & it'd be nice if we could chat sometime soon.

Take care-
Lisa :)

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I'm sorry that this round of Xeloda is hitting you so hard. It must be frustrating on top of feeling like s**t. Try to rest as best you can and know that we are here for you. I hope you feel better soon.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Well... doesn't THAT just suck!!! Whine away.... we all been there but you seem to get more than your fair share...stupid cancer!! That Xeloda did not agree with me either. I got bad headaches from it. The hand/foot was not as painful as yours... just a lot of peeling skin. If ya really want to unload...call me. I talked to PaulaG on the phone the other day and we both felt so much better after our talk. PM me if you need my number again. You take care!

Jennie

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

Wow Lisa! I'm sorry to hear you are having such awful side effects. And definitely don't want to hear about a recurrance. I am having such an awful time with the folfiri that I was going to ask my onc about switching me to xeloda with the lapatinib. I don't remember having such issues with the xeloda. The 5fu just takes me all the way down! Especially the bolis push. Absolute terrible nausea. Just awful. Anyway, I'm thinking of you and sending positive thoughts your way. Hang in there.

Sheri.

Annabelle41415's picture
Annabelle41415
Posts: 6734
Joined: Feb 2009

I'm so sorry that you are having that many problems on Xeloda. When my treatment called for that I'm thinking it was 500 mg a tablet but two at a time, two times a day. You are taking much more than my treatment. Hoping that you feel better soon. Just don't like it that you are suffering so. Can you talk to your doctor about a different treatment? You and in my thoughts and prayers every day.

Kim

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Lisa,
I am sorry you are feeling so bad. How fricken hard it must be to be Mommy and be feeling like junk. I am praying for you. I am praying for relief from the pain and awful feeling. I am praying for your beautiful children. I am praying for peace for you my friend.

Aloha,
Kathleen

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Thank you for all of your kind words and prayers. :)
I know I will get through this and I plan on talking to my onc to see what else I can do. I'm just afraid he'll suggest I switch back from the Xeloda back to the 5FU pump. That still gave it to me a bit, but I so hated having that darn thing stuck to me. I have such problems with adhesives giving me rashes and blisters, that after about 5 hours or so of having tape stuck to my chest around my port, I was in agony from that. Can't win- frustrating.
I'll be ok- thanks for listening to my venting/whining. :)

Good night all-
Lisa

dorookie
Posts: 1736
Joined: Jul 2007

Lisa,

I am so sorry to hear you are having a hard time. I was lucky with Xeloda, I was on 5000 mg a day, and with the exception of the neuropathy in my feet, I survived Xeloda. I would do it again over doing the 5FU pump, to me that was worse. but we all handle chemo differently.

I just wanted you to know I was thinking of you and will continue to pray for you.

Take care my friend..

HUGS
Beth

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Sorry to hear that you're having such a rough few days. But everything should be okay if you just stay out of WalMart. Sorry I couldn't pass that little reminder up. LOL. i hate the times when we feel like crap. It's 2am and I woke up out of a sound sleep because of cramping in my gut and leg pain. Thinking of crawling into my 4 year olds bed with him. He looks so cute and it makes me forget about the bad times. I wish I still lived in the area so I could maybe be of more help to you. We Cancer people need to stick together. :o) I hope things get better for you...

Brooks

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

This whole thing is a mess just hang in there!
hugs!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Brooks,

I haven't done any fainting in Walmart lately, LOL- thanks for the reminder :)
Sorry you're up in the middle of the night!
Hope you got back to sleep fairly soon after you wrote the msg.
Take care!

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Lisa - You're such an inspiration. Take it easy on yourself. Hopefully the sigmoidoscopy will be able to see what's going on. Then the wait will be over. Hang in there. Thursday will be here soon.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

tiny needles into tumor and destroy it from the inside out with electricity , not extreme hot or cold. It allows the attack of the specific tumor site without any other surrounding tissue being bothered......Just something to look at...Love to you and yours, Clift

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Lisa, I am inspired by your strength. I read how hard it is for you, but I'm seeing courage. In July/August I did my first treatment of radiation and chemo 5fu and just had surgery the beginning of this month. I don't know which chemo will be coming up for me, but I know if you can do all that you do, I can do it too. ....so many hugs to you and your family!

Gail

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Clift,

I will most definitely look into nanoknife. I didn't realize that it wasn't radiation, but electricity instead. Hmm... interesting how certain doctors and it seems even certain parts of the country seem to focus more on certain kinds of treatments and not even mention or are familiar with others. Definitely looking into it, thanks... :)

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

It was all in this site, I learn everything from here then extend it in the WWW (World wide web) but, only the ones that are newly dated. It is so amazing what this site holds and so much that it has taught this boy from Podunk Ky....LOL.....It got me out of my area to explore other options in my treatment regimen that I think is saving my life.......Lisa, I truly hope this works out for you....If not, we'll find something that will.....Love ya, Clift

dmdwins
Posts: 453
Joined: Aug 2008

Just hoping and prayin that you are feeling better Lisa.

Smiles,
Dawn

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

I'm feeling much better now- thought I'd let you all know (after complaining) that I'm not as down as I was. Friday and Saturday were absolutely awful, but then I woke up Sunday feeling a little better. I still had a slight headache and felt tired, but my hands and feet weren't quite as bad, so I did make it to church. Yesterday (Monday), I woke up completely forgetting that my feet hurt cause they didn't anymore! So weird, though, as I'm still on Xeloda through Thursday morning. You'd think it would just keep building up and get worse until I stopped taking it. Why would it be horrible a week into it, then get better while still taking it? Oh well, I'm glad it did & that seems to be what it does most of the time.
I'll report back in after Friday afternoon's onc appt to go over the scan results from the scan I'm having Thursday morning.
Have a good week, everyone!

Lisa :)

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Hugs and more hugs Lisa!,

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

So glad you are feeling better. Hope the scan results Thursday are good.

cwork's picture
cwork
Posts: 37
Joined: Oct 2010

Lisa, I hope you are feeling better and I am praying for good news on your test coming up. You are so good for others on this board, especially the newbies that need some encouragement and inspiration. Take care of yourself first and don't worry that you have to miss a function or two of the kids. You are going through all of this so you will be around to attend all those carnivals and take them trick or treating for years to come. Only known you a few weeks, but think of you often.

mom_2_3
Posts: 965
Joined: Nov 2008

I just wanted you to know that I am thinking of you. I imagine you are going in to see your doctor soon for scan results and I am sending good thoughts and prayers that you get great news. You are so inspiring to me Lisa. I send you virtual hugs all the way from here in NJ to you out there in CA.

Amy

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