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    Old 05-28-2007, 08:22 PM   #16
    Heidi'sMom
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    Re: Ulcerative Colitis + Colon Cancer...

    Wow, Mary. That is inspiring to all of us who are fighting this disease. Kudos to your mom (and you, too). Thanks for sharing that story. Determination, fiestiness, and faith...great combo.

    Good luck on the results of your biopsy. Sounds like you will be fine.

    Thanks again!

    Pam

     
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    Old 05-29-2007, 07:25 AM   #17
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    Re: Ulcerative Colitis + Colon Cancer...

    Yes she said she wanted to show her grandchildren that you keep fighting and don't give up. She's something else. She insists on cleaning her kitchen floor (on her hands and knees) every day and makes dinner every night for her and my Dad. When she heard I was sick she said "I need to come up there and take care of you!" (ha ha.....we didn't let her) but she thinks she can do anything and I believe it is half the battle!! MC

     
    Old 05-29-2007, 10:58 AM   #18
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    Re: Ulcerative Colitis + Colon Cancer...

    Mary,
    that is a great story and I must say I am impressed with your mother's strength and gumption. Our parents generation were a force to be reckoned with, and I'm glad to hear she is a 10 year survivor. My grandmother was diagnosed at 80 with cancer and lived 17 more years!!
    How did she get rid of the cancer that was entwined in her kidney? did she have to go through chemo?
    That is amazing to hear about. thanks for sharing.

     
    Old 05-29-2007, 06:22 PM   #19
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    Re: Ulcerative Colitis + Colon Cancer...

    Quote:
    Originally Posted by Steven94598 View Post
    Well, I've been feeling better than I expected after such a major surgery...until now. I just got my pathology results and they weren't what I wanted to hear:
    - 4cm tumor extending through the bowel wall into the fatty tissue with two positive nodes
    - Stage: T3N1MX

    My surgeon setup an appointment for me with an oncologist, but they can't see me until Monday at 5pm. Is it reasonable to give a patient this kind of information and then make them wait 5 days for answers? What are my survival chances? I am really freaking out right now. I'm also afraid to do too much research on the Internet as the first set of data that I found was a lot worse than I expected.

    Help?

    -- Steven

    Hi Steven,
    I just re-read this whole thread for the 2nd time and wanted to comment on your post. My husband was diagnosed recently and just got home last week from the hospital. You and he have some similarities, he's a few years older though, will be turning 44 next week.

    I didn't understand the staging codes that were mentioned before but do now since we got the surgery report and I looked everything up. His stage is T3N2MX, so he's a little worse off, with 12 of 36 nodes testing positive. I assume the "X" means unknown, so that's a little disconcerting.
    We will meet with the oncologist on the 5th of June, and he'll start treatments in 5-6 weeks for 6 months.

    I hope you're feeling less panicked by your cancer news. It seems that from what I've read that survival rates are pretty high even for Stage 4, which is encouraging. The fact that you're young also helps I'm sure. I'm hoping that will also play to an advantage for my husband. His attitude is good and I'm the one who's the "worrier" in the family. That's why I'm always on this board!

    I just wanted to respond and comment to your post and I'm wishing you and everyone else out there going through treatment, or recovering, the very best

     
    Old 05-30-2007, 07:23 PM   #20
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    Re: Ulcerative Colitis + Colon Cancer...

    Backslide:

    I hope that your husband is recovering well from his surgery. What type of surgery did he have? I was very fortunate to have mine done by a "minimally invasive" specialist. From what I've heard, this made a huge difference in terms of how quickly I recovered from the surgery.

    In my case, they used a PET scan (ordered by my oncologist) to determine my "X" (i.e., whether or not it had metastasized). I don't know if there are other tests/methods that they use to figure it out.

    I am feeling a bit less panicked about the situation. In fact, I managed to stay away from "the board" for more than 24 hours, so this is good. I believe a variety of factors have helped:
    - Getting the results of my PET scan definitely played a huge part
    - As time goes on, I've come to realize that this isn't something that's going to go away tomorrow. No amount of "urgency" or panic is going to help. I'm trying to start incorporating non-cancer-related activities back into my life.
    - Getting onto some anti-anxiety meds played another huge part
    - Attending meetings at the local Wellness Community center

    I understand how hard this can be for the person/people in the caregiver role. When I was in high school, my mother was diagnosed with breast cancer (Stage 3, 9 positive nodes) on the same day that her mother suffered her first heart attack. We had to help mom get through the surgery, radiation and chemo while keeping the cancer a secret from my grandmother and taking care of her in the hospital and her subsequent time in the nursing home. That was NOT fun.

    So far, my partner is doing pretty well in light of what we're going through. Some things we've done to help him:
    - We attended a wonderful seminar last night entitled "Cancer for Two" which discussed the various dynamics and feelings that come up for couples as they go through this.
    - We're trying to spread the "duties" around to a variety of different friends so he doesn't get overwhelmed taking care of me. I let him know when there are specific things that I want him for (e.g., my first chemo etc.)
    - I'm currently in the process of lining up different friends to "kidnap" him for social events since I'm not up to many of them, but he's afraid of hurting my feelings by going without me.
    - We signed up for concurrent support groups at the Wellness Center so I can go to my "patient's group" and he can go to his "caregiver's group" at the same time. This is easier on our calendar and we can treat those evenings as "date nights" with dinner before our meetings.

    I know that it is easy for the caregiver to get lost in all this. I hope that you take care of yourself and find ways to ease the burden. I also hope that things go well at your husband's first meeting with his oncologist.

    PS: We LOVE San Diego. We have many friends down there. We're looking forward to more frequents visits there once I finish my treatments and we move down to Palm Springs.

    -- Steven

     
    Old 05-31-2007, 02:58 AM   #21
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    Re: Ulcerative Colitis + Colon Cancer...

    Steven, you see much calmer about your cancer now, and you are definitely approaching this hideous disease with a positive outlook and finding out everything you can for yourself and your caregiver(s).

    Good for you! Keep it up.

    Pam

     
    Old 05-31-2007, 08:10 AM   #22
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    Re: Ulcerative Colitis + Colon Cancer...

    Quote:
    Originally Posted by Steven94598 View Post
    Backslide:

    I hope that your husband is recovering well from his surgery. What type of surgery did he have? I was very fortunate to have mine done by a "minimally invasive" specialist. From what I've heard, this made a huge difference in terms of how quickly I recovered from the surgery.

    In my case, they used a PET scan (ordered by my oncologist) to determine my "X" (i.e., whether or not it had metastasized). I don't know if there are other tests/methods that they use to figure it out.

    I am feeling a bit less panicked about the situation. In fact, I managed to stay away from "the board" for more than 24 hours, so this is good. I believe a variety of factors have helped:
    - Getting the results of my PET scan definitely played a huge part
    - As time goes on, I've come to realize that this isn't something that's going to go away tomorrow. No amount of "urgency" or panic is going to help. I'm trying to start incorporating non-cancer-related activities back into my life.
    - Getting onto some anti-anxiety meds played another huge part
    - Attending meetings at the local Wellness Community center

    I understand how hard this can be for the person/people in the caregiver role. When I was in high school, my mother was diagnosed with breast cancer (Stage 3, 9 positive nodes) on the same day that her mother suffered her first heart attack. We had to help mom get through the surgery, radiation and chemo while keeping the cancer a secret from my grandmother and taking care of her in the hospital and her subsequent time in the nursing home. That was NOT fun.

    So far, my partner is doing pretty well in light of what we're going through. Some things we've done to help him:
    - We attended a wonderful seminar last night entitled "Cancer for Two" which discussed the various dynamics and feelings that come up for couples as they go through this.
    - We're trying to spread the "duties" around to a variety of different friends so he doesn't get overwhelmed taking care of me. I let him know when there are specific things that I want him for (e.g., my first chemo etc.)
    - I'm currently in the process of lining up different friends to "kidnap" him for social events since I'm not up to many of them, but he's afraid of hurting my feelings by going without me.
    - We signed up for concurrent support groups at the Wellness Center so I can go to my "patient's group" and he can go to his "caregiver's group" at the same time. This is easier on our calendar and we can treat those evenings as "date nights" with dinner before our meetings.

    I know that it is easy for the caregiver to get lost in all this. I hope that you take care of yourself and find ways to ease the burden. I also hope that things go well at your husband's first meeting with his oncologist.

    PS: We LOVE San Diego. We have many friends down there. We're looking forward to more frequents visits there once I finish my treatments and we move down to Palm Springs.

    -- Steven
    Hi Steven,
    Just read your post. You shared some good ideas. I have a very supportive work family and a few good friends, but not much in the way of real family in the area. I will be going with him next week to meet with the oncologist and then to his first treatment in 5 or 6 weeks. otherwise he's driving himself to appts., and getting along pretty well I'm happy to say, especially since I have to work and keep at least one paycheck coming in.

    His surgery was combo laparscopic and regular incision, due to size of the tumor (8 cm!), and having his gallbladder and lymph nodes -oh yeah, and appendix taken out as well. So they had to make a bigger incision, so his hospital recovery took a full 10 days. once he got home though he progressed to practically eating normal in days and looking better and feeling better than before the surgery he said.

    He did have a PET scan and CT scan prior to the surgery and I know that nothing was found elsewhere but they still label him an "X" for that portion. I guess I will ask the oncologist about that. I realize that microscopic cancer cells can't be seen on these scans and that's what is worrisome so me! and I guess that's where faith and acceptance comes in.

    How coincidental that you are moving to Palm Springs. I lived there as a teenager and young adult (actually Palm Desert and Indio), and my husband and I have been there a couple times (he loves it, but I am not a fan of the heat!) so prefer living near the coast.

    Thanks for your reply and hope to be able to keep in touch with you as you progress in your treatment and my hubby begins his road to recovery as well. Take care

     
    Old 06-18-2007, 09:45 PM   #23
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    Re: Ulcerative Colitis + Colon Cancer...

    Hi all!

    Sorry for the long delay between posts. I took a bit of a break from cancer and tried to lead a semi-normal life for a little while before starting chemo. Unfortunately, reality was a bit of a problem with this plan...

    Had my port installed on June 7. In the beginning, it was VERY problematic. I had difficulty breathing and pain in my chest. I've had two chest x-rays that seem to indicate that the port is correctly positioned, so I'm just hoping the discomfort dissipates over time. Apparently, these symptoms are pretty common early on, but have lasted much longer for me.

    Also, I had my first chemo treatment today (FOLFOX4, Cycle 1, Day 1) of:
    - Zofran (anti-emetic)
    - Calcium and Magnesium
    - Leucovorin and Oxaliplatin
    - More Calcium and Magnesium
    - 5-FU (Push)
    - 5-FU (22 Hour Pump)

    For starters, the EMLA cream works wonders if you use it an hour before the treatment. They unexpectedly accessed my port last Friday (without the EMLA prep) to make sure that the port was working. It REALLY, REALLY hurt (and I've got a relativey high pain threshold). Today, I did the EMLA prep and didn't even realize that they had already put the needle in. I'll be religious about the EMLA cream until this is all done. Goop it onto the port an hour before treatment and cover it with plastic wrap. Awesome.

    The infusions were pretty uneventful. Got a little dizzy during the Zofran, but nothing serious. I was also surprised at how much I had to pee during the infusions. I was up to the bathroom every 15 minutes. Seating suggestion, if possible...Choose a seat near the bathroom but away from any air conditioner!

    This afternoon, the side-effects started to kick-in. No nausea yet. I do have:
    - minor tingling in my fingers and tongue
    - heavy taste of metal
    - pain in the eyes if I yawn, sneeze or cough
    - Shooting jaw pain if I eat/drink anything cooler (or warmer) than body temperature. I tried room temperature water and suffered. It seems that tiny sips warmed in the front part of the mouth before swallowing seems to work best. I also had to cool down a pork chop before I could eat it due to the same problems. Hopefully this will dissipate in a day or two as this is the most troublesome of the effects so far.

    Tomorrow, I'll get pretty much the same treatment as today except I won't get the Oxaliplatin.

    Not much else to share. I hope this helps someone else who is getting ready for their chemo treatments.

    PS: I found a WONDERFUL book. I hope I'm not violating any rules mentioning it here. I was drawn to it as it was the only book that gave any attention to the process of training your bowels after colon surgery. The book is written by Mark Pochapin (i.e., the doctor that treated Katie Couric's husband for colon cancer). The title is What Your Doctor May Not Tell You About Colorectal Cancer: New Tests, New Treatments, New Hope.

    Until later...

    -- Steven

    Last edited by Steven94598; 06-19-2007 at 05:56 AM.

     
    Old 06-19-2007, 05:07 AM   #24
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    Re: Ulcerative Colitis + Colon Cancer...

    Hi Steve,

    Hang in there! I know what you mean about the port. Mine only hurt about 2 weeks after. Now, it's just part of me, except when I do a certain exercise and when I lean over the pad, ouch!! I keep forgetting it's there.

    I'm Stage III colon and have 3 out of 8 treatments so far. Your symptoms are right about the cold sensation. I have to heat my tap water as well. Use gloves to get in the fridge and you have (what I call) flavor bursts. Put something in your mouth and the saliva glands (in back) just burst to being almost painful. And yes...tears coming from your eyes can hurt just as they are coming out.

    You may or maynot have a problem with muscle spasms (legs hurt). I believe that's because of the Calcium and Magnesium. My nurse started slowing that drip going in and that seemed to help somewhat. (just some pointers if this happens and to mention to nurse).

    These go away eventually.

    You will be tired and just stop and take naps or just sit down when you need to. This is the hardest thing I had to learn (cause I'm on the go all the time).
    It really helps to rest. Think this is the most important thing of all.

    It's good you have a partner to talk to and tell of all your feeling.

    Oh...something I have been telling people as well. You need to ask your doctor about this.

    They are doing research on Gensing for Cancer related fatigue. I asked my doctor and he said some people it works and some it doesn't but it doesn't hurt to try. I have been on it for 2 weeks.....now,,,weather it's the gensing (pills) or weather it's because they lowered my dose of Xeloda, I do feel a bit more energy.

    Just do what you can do and remember it's not forever and better than the alternative!

    Wishing you the best
    Claudia

     
    Old 06-19-2007, 05:59 AM   #25
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    Re: Ulcerative Colitis + Colon Cancer...

    Good to hear from you again, Steven. I've been wondering where you were. The port doesn't hurt after a little while. I had my last chemo treatment last week. Hopefully, I won't have to keep going in for Avastin and can get it removed soon. Good luck on your treatments. I haven't been on here too much as I've been spending time on another board, as well as some other members. I try to check in here every other day or so, though.

    Keep your chin up!

    Pam

    I Peter 5:10

     
    Old 06-19-2007, 10:10 AM   #26
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    Re: Ulcerative Colitis + Colon Cancer...

    Steve-
    thanks for your update on your treatment. I've printed to bring to the orientation meeting next week with the chemo nurse. I think husbands chemo to be very similar, and want to mention some of the things you have experienced.

    Also thanks for the info on the book. I will look for it either at the library or order it online.

    Claudia, what other cancer boards are you referring to? I'd like to find as much info and support as I can and wonder if there's a way for you to convey without upsetting moderators.
    Good luck and best wishes to all with your continued treatment and road to health

    Last edited by backslide05; 06-19-2007 at 10:11 AM.

     
    Old 06-19-2007, 10:42 AM   #27
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    Re: Ulcerative Colitis + Colon Cancer...

    Quote:
    Originally Posted by backslide05 View Post
    Steve-
    thanks for your update on your treatment. I've printed to bring to the orientation meeting next week with the chemo nurse. I think husbands chemo to be very similar, and want to mention some of the things you have experienced.

    Also thanks for the info on the book. I will look for it either at the library or order it online.

    Claudia, what other cancer boards are you referring to? I'd like to find as much info and support as I can and wonder if there's a way for you to convey without upsetting moderators.
    Good luck and best wishes to all with your continued treatment and road to health
    Backslide, I think you meant that question for me and we're not supposed to give out that kind of information on here. You could try g**gl* by person's on line name or something. That might work. I'm sure there are ways. I've been kind of busy and haven't really taken the time to do a lot of searching. Good luck.

     
    Old 06-19-2007, 11:05 AM   #28
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    Re: Ulcerative Colitis + Colon Cancer...

    Hi,

    Wishing you well -- I am colitis turned Cancer, too...

    There is a lot of support here, though I think we have much fewer posters here than when I was in treatment (class of 2005-2006)... Search around and you will find some other ways to get support in addition to this forum...

    Just want to send support out to those of you in the class of 06-07 ...keep fighting!! It is not an easy battle, and for some it is a neverending battle...for others we feel so incredibly fortunate for each day that we are blessed to be "cancer free." Us chemo/rad grads are here for you newbies...keep on posting ...here and elsewhere...

    Take care all,
    Cats

     
    Old 06-19-2007, 07:39 PM   #29
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    Re: Ulcerative Colitis + Colon Cancer...

    Steve I just read your comments about your port and chemo. I finished my chemo in May, 2005-sometimes it seems like just yesterday, sometimes like a lifetime ago. I started laughing with your bathroom comments. I remember my first treatment. I was also going to the bathroom every 15 minutes. No one else seemed to have that problem. I wonder if it is the Oxal. since I didn't go as much the second day. I think after the second or third chemo session, things settled down a little. If I remember correctly, the cold sensitivity decreased a little the week after each treatment. Many of my treatments were during a Minnesota winter-I heard it really is just as hard in Florida going from the outside to airconditioned buildings. Fatigue is common. Just listen to your body. Don't push yourself-you need to take care of yourself and not try to be a superman. Rest when you need it, eat what tastes good. Try to keep a positive attitude. There is life after chemo.

     
    Old 06-20-2007, 08:30 AM   #30
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    Re: Ulcerative Colitis + Colon Cancer...

    Quote:
    Originally Posted by edinaman View Post
    Steve I just read your comments about your port and chemo. I finished my chemo in May, 2005-sometimes it seems like just yesterday, sometimes like a lifetime ago. I started laughing with your bathroom comments. I remember my first treatment. I was also going to the bathroom every 15 minutes. No one else seemed to have that problem. I wonder if it is the Oxal. since I didn't go as much the second day. I think after the second or third chemo session, things settled down a little. If I remember correctly, the cold sensitivity decreased a little the week after each treatment. Many of my treatments were during a Minnesota winter-I heard it really is just as hard in Florida going from the outside to airconditioned buildings. Fatigue is common. Just listen to your body. Don't push yourself-you need to take care of yourself and not try to be a superman. Rest when you need it, eat what tastes good. Try to keep a positive attitude. There is life after chemo.
    Edinaman,

    since you a now 2 years post chemo, may I ask you do you have any residual effects from the chemotherapy treatment? Do you feel "back to normal" or different than before? I've been reading and hearing that post chemo it takes a long time for people to feel like themselves, and was wondering how you felt. My husband is starting chemo soon and I worry that he'll never be the same person again, I'm a worry wart and can't help it, but want to think positive, and am trying to. Any help from you or anyone out there who's finished chemo and feels NORMAL again, please post!!
    Thanks and God Bless,

     
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