mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[Bev G]

Bluxmas,

Yes, please do join the caregivers' thread. The wonderful folks there go through and support each other through EXACTLY the sorts of things you have written about. It seems you have read through enough of this thread to understand we are stage IV peeps trying to support each other through this reality, and our Kathryn started it just so we would have and "free" zone to not feel compelled to deal with stage IV issues (or other issued) outside of what we ourselves are experiencing. I visit the caregivers thread frequently, as my husband has stage IV lymphoma, and they are all wonderful, and a wonderful help and support. Best of luck to your mom and family.

[Becmac]

Bev G
My husband would like to get to that thread and can't find it. Where does he go? Is it called caregivers thread?

Thanks Becky

[Bev G]

HI Becky,

It's called "WIves of husbands with stage IV freaking cancer" but it is by no means just for wives, there are husbands, widowers, kids, etc, and as I mentioned, although I'm one of just a couple, not just CRC either.. mine has terminal lymphoma. HTH.

Bev

[tchan8888]

Update from the latest PET/CT Scan this week. Great news! The maintenance chemotherapy of 5FU is working. The lymph node tumors are shrinking. My Oncologist said that the cancer is very sensitive to chemotherapy. We will continue on the 5FU every two weeks regimen for 4 more sessions (I'm currently on career session 16) and then scan again. I may actually get a BREAK again. That would be nice.

Know a lot of us are having challenging times. My thoughts are of you and the fight that we face.

Blessings,

Tom

[skypup]

Tom, you just made my night. Thank you for sharing your good news!

[Guinevere]

Wow! I'm heartened to read all the good news on this thread! Reminds me that my yucky days (yesterday & today) will get better. I have super awful the last couple of days.

Can you believe it but Audrey still hasn't come!! Her poor mom's having back pain but nothing regular. If she doesn't get here by Monday, they'll induce. We're just hoping that doesn't necessitate a C-section.

Will let us know when she gets here. God bless~ Gwen

[Becmac]

Thanks Gwen and Skypup for the information on Stivarga. I don't know what they will decide to do with me but I do not feel like going on something that half kills me for 5 months to live just 1.4 months longer than that. I don't understand about statistics but all my questions will be answered Tuesday i am sure. Just because I have read how it can destroy your vocal cords I am now scared. As I am a singer I would just hate to loose my life long talent and vocation. Even though I am not much able to play anymore I can't imagine not being able to sing at the end of my life. I know that sounds ridiculous but I would be really really sad. Has anyone lost their voices? Did you once again loose your hair? No biggy but those thoughts leave me a bit more depressed. Would I rather not do this and if not and I take nothing is it more painful? Just questions that come to me in the middle of the night. Thanks all for being here.

Becky

[skypup]

Hi Becky,
I know what you mean about not wanting to be half dead from the meds. I think they are finding, though, that there are some molecular markers/genes that will predict whether Stivarga will be more helpful than that stupid 1.4 months. Your onc may know about this (although the clinical docs can't always keep up with the new research), or someone on this forum probably knows the name of a doc who is a specialist in molecular stuff…
SP

[DogMom]

Hi All.. Greetings from SoCal. Lying low today after my third infusion of Irinotecan. Looking forward (not so much) to thee next four days of feeling crummy despite a host of anti-nausea meds and anti-diarrhea meds. After that, pretty good 16 days or so until next infusion. Looking forward to getting a scan to see if this is working.

Re: Stivarga, I did not lose my voice. The fatigue, however, was unlike any other chemo I have been on before or since. If you have a schedule where you can sleep 10 hours a night and not accomplish much during the day, Stivarga was less wretched for me than either Oxi or Irinotecan in terms of nausea and diarrhea.

WRT hair loss on Stivarga, my hair thinned to a point that I wore hats or wigs from May (started 1/1/13) to about 3 weeks after I went off it in early Nov. my hair (cut super short in Nov) is now thinning again on irinotecan. Will likely be covering my head again in another 2 weeks.
Happy weekend all... Bonnie

[janeandrea]

Hi Bonnie -

I'm sorry you are feeling so unwell.

I was wondering if you could tell me a little more about your irinotecan experience so far. I just started on it with my first infusion a week and a half ago. My next one is this coming Thursday. I am scheduled for every 14 day (every other week); it seems like you have longer between infusions? Also, your signature says "Xeliri" - are you also on Xeloda or something?

I felt like crap for a few days after my infusion, fatigue, nausea (no vomiting), increased rectal pain and stomach gas pain. I haven't gotten diarrhea, but I tend toward constipation anyway - and Zofran seizes me up faster than anything. So I have had constipation. Since then I haven't felt good, but better than the first few days.

My hair thinned on Folfox (last time I was on IV chemo, several years ago), but that hasn't started happening with Irinotecan yet. When did that start happening for you?

Anything you can tell me would be helpful.

Thanks,
Jane

[DogMom]

Hi Jane.. Fellow warrior..

My first infusion of Irinotecan was actually much worse than the last two. The Aloxi in my drip, plus Zofran, gave me a screaming headache for three days after infusion. Since my onc and I agreed that it was that class of drugs, she switched me to a scopolamine patch and Compazine tablet for nausea, plus Emend in my drip. Once those changes were made, I have not had much in the way of headaches after infusion. I fast the night before and the morning of infusion to avoid any bathroom issues during infusion. This seems to have worked so far. I am the opposite of you when it comes to bowel issues. Since my transnational excision and radiation to the rectum, I take 3 Lomotil every day, even during chemo breaks. They have added for me on this regimen Sandostatin, a daily injectable, to help with those problems.

Yes, Xeliri reflects that I take Xeloda alongside Irinotecan, instead of a 5fu pump. I do get about a grade 1 HFS from that. But I use greasy moisturizer with socks at night, and the result is not too bad.

My hair was already super short from thinning on Stivarga. I had covered it for months. When I went off the Stivarga it started coming back like crazy. I got one of those super short cuts that are in style right now. It got me through the first three infusions of Irinotecan, but I can tell that it's thinning. Soon, when my scalp shows through where there should be hair, I will have to cover it again. Last year was the first hair loss I ever had on chemo. I did have some bummed days about it, but I bought a bunch of cute hats, and for late Spring, summer and fall, I think I pulled it off.

If you have any more specific questions, please feel free to PM me.

Best wishes, Bonnie

[janeandrea]

Thanks, Bonnie, I will PM you, since you prefer that. (sometimes it is helpful for others to read replies to other folks' questions in the forum)

Jane

[exaussie]

Hello new to this forum. I am here for my son, age 25 diagnosed 6/13 stage IVB incurable after blockage and resection. Mets to lymph nodes. He has had 7 chemo then body reacted with fissure then tore through repair of fissure. He then herniated along scar line 7 times. No chemo since Oct. Has an open hole now from hernia repair that needs to close before chemo restarts. We have appointment this Friday at City of Hope in CA. He is depressed and never knew that effects of chemo are more painful than chemo itself. Thank you for having this forum to read and realize we are not alone.

[Guinevere]

Exaussie,
I'm sorry you had to find us. There's a thread for caregivers that might be more help to you than this one. It's named Wives of Freaking Cancer or something like that. Even though the title has the word "wives" in it. There are husband's, parents and children of cancer patients. I, too, was surprised at how much worse I've felt from side effects than the chemo. The chemo is bad enough!

No baby yet. I've said that her water will probably break during the 4th quarter of the Patriot - Broncos game. if no baby today, OB will induce tomorrow evening.

Feeling a little less crappy today than I have been feeling. I just hope I get some bounce back this week. I didn't get much of one the last time around.

Haven't heard in the last couple of days how Kathryn's doing. I was able to leave a message of encouragement yesterday though. Her daughters are good about reading them to her.

God bless ~
Gwen

[skypup]

Just saw a link to our own Tom Chan's blog: http://thomaschan8888.wordpress.com. Thanks for writing, Tom. I think it does all of us good when one of us shares info, and announces to the world: I'm still alive. Btw, I have only read Murakami's 1Q84. and loved his writing.