CarolLHRN

Hi Carol,
I have a friend just recently diagnosed with Stage IV. So excited for you reading your posts. I may have simply over looked this, but was wondering what stage your cancer was?

I used to live in Pittsburgh too! Mt. Lebanon and Greentree area. I'm always surprised at how many women have colorectal cancer-everyone seems to think of it as a guy thing. How are you doing? I never had chemo (too weak post surgery) but I was afraid of the side effects. You're very brave and positive to endure so much so young. I hope you get some feeling back in your feet. God Bless You!

Hi there, you've been exactly where I am now and wondering if you can help me along as I am struggling. Had 6 wks of chemo/radiation and just had ileostomy 1 1/2 wks ago. In pain and ended up having appendix taken out which I hear is usual. Can you help me out as to what to expect now ?

I see you live in Pittsburgh, PA. Do you have any suggestions on good doctors? My dad just go the new Friday. I cry night and day. I am so scared. My dad is everything to me. I don't cry in front of him though. He is going for his colonoscopy Wednesday. They found it through a CT scan because he was having stomach pains

Hi CarolLHRN.. I read your story and wow I think we went through the same things! The only thing was my cancer came back and now it's my lifetime battle. I used all the same chemos you did and nothing worked. My newest chemo is Irinotecan and the side effects are horrible. All I can do is take one day at a time. I hope we can chat.

Just read that you are having some major neuropathy problems and that you are on FOLFOX Chemo. I'll be starting that stuff in 2-3 months after my surgery in 3.5 weeks. Hoping that you get better really soon.

Harry

Hi Carol, Hope your doing well.

This person has a question about having a valve removed in her colon. do you know anything about this? Can you help.
https://www.whatnext.com/questions/ileocecal-valve

Hi Carol,

I'm hanging tough & feeling pretty well. I had my 3rd round of chemo today. Thanks for sharing your experience & info on HRT. I spoke with my doc & asked if my periods might resume, he thought it was doubtful & that's fine.

I'm praying that my outcome is just like yours - I had another doctor look at my records today. She wasn't very optimistic about having a reversible ileostomy. I am hopeful for the best and preparing myself for whatever comes my way.

Thank you for your support - it is so reassuring to read your journey & those going through similar experiences.

Thanks again - Bonnie

Hi Carol,

Thanks for sharing your equal experiences with temporary ileostomy and neuropathy. My surgeon also said it would take over a year at least to begin to see some "normalcy" after my rectun and colon resections. Instead of a j-pouch he just hooked the "parts" together, although I did ask about the j-pouch technique. I also tried to keep a log of bowel activities, but as soon as I thought there was a pattern, after several days it again changed. I am now six months out from my last of the 12 FolFox chemo session (completed August 4, 2012) -- diagnosed July 2011 - 1st surgery with ileostomy October 2011, reversal December 2011, started FolFox chemo January 2012. l have noted a recent pattern where activity is often confined to a period of time which can last "on and off" for about 60--90 consecutive minutes at any time of day. Mostly now mid- to late afternoons -- no guarantee of this as a regular pattern as can and does sometimes change, but will say it is about 75% of time -- of course it can also be mornings as well. But once the 90 minutes of activity ends, usually 75% of time that can be it for most of the day. Nights now have been for the most part, bowl activity free. Also take Metamucel as an aid in that my surgeon did recommend taling twice a day. My GI also recommended 1/2 of an Imodium when needed. As to the neuropathy in feet, always feel toes tightly "bound" and walking for any legth of time feels like I have wooden planks nailed to bottom of feet and really "aches" after walking for too long.. Fingers also have neuropathy, but not painful, and most noted when closing fingers, but cold not a problem. Guess fine watch making or neuro surgery is out. Had learned from my oncology NP that taking folic acid, B12, B-complex and alpha lipoic acid capsules daily could even help more quickly regenrate the covering that protects the nerves, as it is this protective lining that was destoyed by the chemo exposing the nerve endings --- although I also learned in some cases PN can be permenant. At a recent local neuropathy society meeting, I was informed that I needed to take 900 ml of alpha lipoic acid per day, as evidenced in several clinical studies. I have ben taking this vitamin regimen for almost two months and have not seen any improvemnt, so just hoping in the 1-plus years to go, I will see natural improvement. Hope your journey continues to go well and enjoy those comfortable slippers. Like to hear back and stay in touch from time to time to learn from each other and see only successes. Stay well. Papabill

thank you for your the message. this is the first time i have ever used a site like this and so far, it is people like you that i have met here that seems to be making this journey much easier to cope with. i wish you all the best in your treatments and i say that we should both beat this thing together and let it know that it has attacked the wrong bodies this time. keep me posted and keep up the good fight.

HI, I'm really new here. Facing the realization that my husband may have colon cancer. It sucks and I'm so scared. He is 46 and has a colonoscopy Wednesday with biopsy. They've already scheduled an appointment with a specialist because in the ER they saw a large highly suspicious mass in his cecum. We've been married only a year. I finally found someone to spend the rest of my life with and now I'm terrified. I want to jump inside his body and suck it all away. I feel the least I could do was to take some of the treatments along side of him...

I have no idea what to expect. I council people on cancers as part of my social worker job but never had to live the role. I'm scared about the whole thing.

I'm really scared.
or did I say that......... how can I not be a total wreck and be strong for my husband? I want to be.

carol I am on estrogen therepy also.for recurrent breat cancer and into my bones. Please write back.

Hi Carol, I was so sorry to hear about your boyfriend. I'm sure you are both still in a fog. I was diagnosed in July 2010 with stage 4 rectal cancer. It spread to my lungs in Dec of 2011. I now have maintenance chemo treatments every two weeks to keep it at bay. No cure the Dr says but treatable. I, like you, still hang onto the hope of a miracle. I recently took a 2 month break from treatment. I needed it both mentally and physically. I resumed treatment last week and it really hit me hard. I have been in a bit of a funk and the fatigue doesn't help, although I know it could always be worse. I have much to be thankful for and I really have received many blessings thru my cancer journey. I will keep you and your BF in my prayers and please let us know if there is anything we can do for you. One day at a time, as I'm sure you well know that little piece of advice. Blessings from Illinois!!

http://www.youtube.com/watch?v=Jnxvn5CSuc8&feature=share PLEASE, YOU MUST WATCH THIS!!!

Hi CarolLHRN,
Thank you for sharing your vacation. Life is precious.
Living as a survivor is very different than life before diagnosis with a life-threatening illness. I found a wonderful resourse at the local chapter of the Cancer Support Community. I wish I had learned about CSC during treatment. Now I participate in their Cancer Transitions program, exercise programs, and a survivors' support group. All are very helpful and a great release from living the new normal.
Click here to find a chapter in your area: http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Find-a-Local-Program