Just recently diagnosed with colon cancer

245

Comments

  • BeenThere5
    BeenThere5 Member Posts: 3

    I had the port put in they

    I had the port put in they wanna shrink the mass before removig it as do I I would preferr not to get a bag for my life, if I have to then I will but i am tryin this first. and I do I have this pretty sweet book from the lance armstrong foundation, it have like pockets to save all my info and place to right how i feel when i start chemo, and my appointments. I will get all my info from the appointment on monday and save it so I know what is happening, as of now we are waiting to see if medicaid is on the yes track to apporving me so they can start.

    Hi...

    I got a port too and had 5-FU with radiation before they did surgery.

    They didn't stage mine right so I really don't know what stage it was although I think I had a 2b even though it grew through the colon wall and attached itself elsewhere. I will never know what stage I really had. Also the first surgeon wanted to give me a permanent colostomy but I resisted and got a second opinion and found an awesome surgeon who put me back together.

    I still have a temporary ileostomy but hope to be able to have it reversed soon and be back to normal.

    They even wanted me to have a colostomy before I had treatment because they thought I would block up because of the size of the tumor. I refused. I was fine...

    My advice - pay close attention to your body. I cut out all fast food and processed stuff. Don't drink alcohol during treatment.  If you don't like what they tell you go for a second opinion. Supposedly only 5% of people have to have a permanent ostomy now, so have faith, believe you will beat this and eat healthier than you ever have.

    I took molasses for the iron thing and also clam chowder and iron pills. Don't know what they told you but ask what you can do. Also ate a lot of steak for the iron during all this - now my hemoglobin (which was 7.4 and I had a transfusion) is up to 11 or probably higher and my energy is back so hey.

    This disease is a wake-up call for all of us but if you have a positive attitude and are determined, you will make it through and come out ok.

    Best wishes to all in this forum and know you can do it! I did :-)

  • wts
    wts Member Posts: 40 Member
    Hey Justin..   I am going

    Hey Justin..   I am going through similar path.  I had my port put in and had Chemo (5fu) and Radiation start in June of last year. After that I had a 6 week break before surgery in October. Surgery went great but I had the bag for 6 weeks while healing. I had another surgery to remove the bag. I'm now going through 12 Chemo treatments with 5FU and Oxaliplatan (probably spelled wrong). It's not as easy as the first regiment of 5fu but still ok.  You'll do great!

  • wts said:

    Hey Justin..   I am going

    Hey Justin..   I am going through similar path.  I had my port put in and had Chemo (5fu) and Radiation start in June of last year. After that I had a 6 week break before surgery in October. Surgery went great but I had the bag for 6 weeks while healing. I had another surgery to remove the bag. I'm now going through 12 Chemo treatments with 5FU and Oxaliplatan (probably spelled wrong). It's not as easy as the first regiment of 5fu but still ok.  You'll do great!

    thank you

    for all of your support, I just got measured up for my radiation treatments yesterday. I found out I will be carrying the chemotherapy treatsments Monday - Friday and radiation Monday - Friday, I am so scared atm. They Prescribed me some anti-depressants (Clexa). They help a little bit but I am stressed out I sleep all day and night it sucks :(.

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    thank you

    for all of your support, I just got measured up for my radiation treatments yesterday. I found out I will be carrying the chemotherapy treatsments Monday - Friday and radiation Monday - Friday, I am so scared atm. They Prescribed me some anti-depressants (Clexa). They help a little bit but I am stressed out I sleep all day and night it sucks :(.

    We're all behind you, Magik

    Fear of the unkonwn is a natural repsonse, Justin.  Once you start the treatments, your fear and thus your sleepless nights will subside. 

    You are young and healthy (except the Cancer) and thats a huge plus. 

    Also knowing that many people are supporting you through this, is a huge help. People around you who know and love you, people here on the forum who don't know you, but are travelling the same road. We're all here for you.

    One thing that helps me handle things better is to look around at the other people having treatment, some of the older, more frail patients look so terribly worn out, that my heart goes out to them, and I find that helps me be stronger. 

    Good luck!

  • jen2012
    jen2012 Member Posts: 1,607 Member
    If they are planning

    If they are planning radiation, sounds like it's not stage 4...so that's a good thing!  Have they done pet scans, ct scans, etc? 

    It's really hard in the beginning while you are trying to process anything.  Seems like things get a little better once treatment begins and you feel like you are doing something. It becomes part of life - try not to let it become the biggest part of life.  My husband says he only thinks about cancer on days that he absolutely has to - treatment days, dr appt, etc.  I'm not sure if that's true or possible, but he does best when his mind is busy with other things.  Try to stay busy, happy and positive. 

    Good luck!

  • YoVita
    YoVita Member Posts: 590 Member
    Sounds like you have a plan

    Stay strong.  Use your support.  Ask questions.  We're all pulling for you.  It does get better.  

  • KayeKay
    KayeKay Member Posts: 122

    thank you

    for all of your support, I just got measured up for my radiation treatments yesterday. I found out I will be carrying the chemotherapy treatsments Monday - Friday and radiation Monday - Friday, I am so scared atm. They Prescribed me some anti-depressants (Clexa). They help a little bit but I am stressed out I sleep all day and night it sucks :(.

    right there along with u.

    right there along with u. stay strong! 

  • wawaju04976
    wawaju04976 Member Posts: 316 Member
    Trubrit said:

    We're all behind you, Magik

    Fear of the unkonwn is a natural repsonse, Justin.  Once you start the treatments, your fear and thus your sleepless nights will subside. 

    You are young and healthy (except the Cancer) and thats a huge plus. 

    Also knowing that many people are supporting you through this, is a huge help. People around you who know and love you, people here on the forum who don't know you, but are travelling the same road. We're all here for you.

    One thing that helps me handle things better is to look around at the other people having treatment, some of the older, more frail patients look so terribly worn out, that my heart goes out to them, and I find that helps me be stronger. 

    Good luck!

    As Tru said, once you start

    As Tru said, once you start tx, you will start sleeping better, as you will feel like you are doing something about it. I was in the hospital for 13 days after being diagnosed, with a new colostomy, listening to my surgeon who didn't have a great prognosis. It wasn't until I got out, met with the oncologist who knew more about cancer than the regular surgeon did.  Do I worry? yep...I will have my sixth fulfox tx next Friday. I have been very fortunate w/very minimal side effects. But, I sleep better because I feel like I'm going after the little suckers (cancer cells). Sitting in the hospital with my thoughts did not help w/depression, sleep, etc. Even the sleeping meds didn't help. You will start sleeping better, and then you will start feeling better after getting some sleep!!! Keep positive thoughts!

    Judy

  • As Tru said, once you start

    As Tru said, once you start tx, you will start sleeping better, as you will feel like you are doing something about it. I was in the hospital for 13 days after being diagnosed, with a new colostomy, listening to my surgeon who didn't have a great prognosis. It wasn't until I got out, met with the oncologist who knew more about cancer than the regular surgeon did.  Do I worry? yep...I will have my sixth fulfox tx next Friday. I have been very fortunate w/very minimal side effects. But, I sleep better because I feel like I'm going after the little suckers (cancer cells). Sitting in the hospital with my thoughts did not help w/depression, sleep, etc. Even the sleeping meds didn't help. You will start sleeping better, and then you will start feeling better after getting some sleep!!! Keep positive thoughts!

    Judy

    I just found out friday will

    I just found out friday will be starting chemo monday kinda excited also worried about side effects but it's ok ill be kicking the cancer in the butt lol

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    I just found out friday will

    I just found out friday will be starting chemo monday kinda excited also worried about side effects but it's ok ill be kicking the cancer in the butt lol

    Yay!

    I'll be thinking of you on Monday.  The actual infusion is a doddle, no problem at all. The side effects, well, they come along and you go with the flow. 

    You look like a slender lad, so be sure and keep yourself hydrated and eat lots. If you don't feel like a regular plate of food, eat little quantities all day. 

    Its good for the soul to know that you are acutally doing something to fight the cancer, instead of just waiting around for tests and test results. 

    Good luck!

  • Trubrit said:

    Yay!

    I'll be thinking of you on Monday.  The actual infusion is a doddle, no problem at all. The side effects, well, they come along and you go with the flow. 

    You look like a slender lad, so be sure and keep yourself hydrated and eat lots. If you don't feel like a regular plate of food, eat little quantities all day. 

    Its good for the soul to know that you are acutally doing something to fight the cancer, instead of just waiting around for tests and test results. 

    Good luck!

    hey thanks I got all hooked

    hey thanks I got all hooked up, and radiation I am feeling ok so far I assume the side effects wont start til tomorrow. I have been drinkin lots and eating lots, tryin to get my weight up :)Chemo pump

  • leelee2012
    leelee2012 Member Posts: 17

    hey thanks I got all hooked

    hey thanks I got all hooked up, and radiation I am feeling ok so far I assume the side effects wont start til tomorrow. I have been drinkin lots and eating lots, tryin to get my weight up :)Chemo pump

    Good luck on your journey!

    Good luck on your journey! You look are in good spirit to beat this. Is that the pack that you have to wear for chemo? 

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    hey thanks I got all hooked

    hey thanks I got all hooked up, and radiation I am feeling ok so far I assume the side effects wont start til tomorrow. I have been drinkin lots and eating lots, tryin to get my weight up :)Chemo pump

    Oh yeah!

    All hooked up and ready to go.

    Radiation isn't something I've experiences yet, so keep us posted.

    I hope you have little in the way of side effects, but you just never know. 

    Good luck!

  • db8ne1
    db8ne1 Member Posts: 142 Member

    hey thanks I got all hooked

    hey thanks I got all hooked up, and radiation I am feeling ok so far I assume the side effects wont start til tomorrow. I have been drinkin lots and eating lots, tryin to get my weight up :)Chemo pump

    My Prayers Are With You!

    Justin,

    Lookin' good!

    I'm brand new here - just been lurking for a while.  But I read your story and wanted to reach out to you - as my heart goes out to you for having to battle this type of thing at your young age...

    I just finished 6 weeks of 5FU through my port/pump 5 days per week in conjunction with radiation 5 days per week, as well.  (Diagnosed with colorectal cancer 12/7/12.  Looks like Stage 3. Finished chemoradiation program on 2/13).  5FU alone is not too bad (it just helps the radiation be more effective).  There is a lengthy list of potential side effects, but I did a lot of research and the % of people who actually get the side effects from straight 5FU is about 30%, The only ones I experienced - and not for several weeks in to it, were a bit of diahrrea, very minimal nausea, and general fatigue.  Of course, everyone is different - but you are young, strong, and healthy (mostly...).   However, the effects of the radiation are cumulative, so you will likely be more tired toward the end from that.   I worked full time during chemoradiation, SO BE ENCOURAGED!  Now I'm just recuperating from the internal effects of the radiation and getting ready to schedule my surgery for 6-8 weeks out.  Take it one day at a time. I'll be praying for you! You can do it!

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    db8ne1 said:

    My Prayers Are With You!

    Justin,

    Lookin' good!

    I'm brand new here - just been lurking for a while.  But I read your story and wanted to reach out to you - as my heart goes out to you for having to battle this type of thing at your young age...

    I just finished 6 weeks of 5FU through my port/pump 5 days per week in conjunction with radiation 5 days per week, as well.  (Diagnosed with colorectal cancer 12/7/12.  Looks like Stage 3. Finished chemoradiation program on 2/13).  5FU alone is not too bad (it just helps the radiation be more effective).  There is a lengthy list of potential side effects, but I did a lot of research and the % of people who actually get the side effects from straight 5FU is about 30%, The only ones I experienced - and not for several weeks in to it, were a bit of diahrrea, very minimal nausea, and general fatigue.  Of course, everyone is different - but you are young, strong, and healthy (mostly...).   However, the effects of the radiation are cumulative, so you will likely be more tired toward the end from that.   I worked full time during chemoradiation, SO BE ENCOURAGED!  Now I'm just recuperating from the internal effects of the radiation and getting ready to schedule my surgery for 6-8 weeks out.  Take it one day at a time. I'll be praying for you! You can do it!

    6 week hook up

    What was it like being hooked up for six weeks?

    I am so happy to get rid of my bag after two days, six weeks sounds unbearable. 

    My onc is still deciding between the hook up and the pills. 

  • db8ne1
    db8ne1 Member Posts: 142 Member
    Trubrit said:

    6 week hook up

    What was it like being hooked up for six weeks?

    I am so happy to get rid of my bag after two days, six weeks sounds unbearable. 

    My onc is still deciding between the hook up and the pills. 

    Well, it was a long 6

    Well, it was a long 6 weeks...Wink

    The first week - when the port was installed - was the worst.  Simply because I couldn't take a shower!  After that, it was fine.  Just an inconvenience dragging the pump around.  Showers were a challenge - keeping the area dry - but doable. I used cling wrap and tape to cover the port and hung the pump on a hangar on the shower rod (after putting it in a plastic bag to keep it from getting wet).  Weekends were the best with no pump, though.  It really wasn't that bad. 

    Good luck!

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    db8ne1 said:

    Well, it was a long 6

    Well, it was a long 6 weeks...Wink

    The first week - when the port was installed - was the worst.  Simply because I couldn't take a shower!  After that, it was fine.  Just an inconvenience dragging the pump around.  Showers were a challenge - keeping the area dry - but doable. I used cling wrap and tape to cover the port and hung the pump on a hangar on the shower rod (after putting it in a plastic bag to keep it from getting wet).  Weekends were the best with no pump, though.  It really wasn't that bad. 

    Good luck!

    Can't bare the thought

    Just the thought of six weeks makes me sick to my stomach, but alas, I will do what I think is best when I talk to my oncologist. 

    I take baths, so just hang the bag outside the bath and don't sink too low into the water. 

    Thank you for your reply, as you know, every bit of information helps. 

  • db8ne1 said:

    My Prayers Are With You!

    Justin,

    Lookin' good!

    I'm brand new here - just been lurking for a while.  But I read your story and wanted to reach out to you - as my heart goes out to you for having to battle this type of thing at your young age...

    I just finished 6 weeks of 5FU through my port/pump 5 days per week in conjunction with radiation 5 days per week, as well.  (Diagnosed with colorectal cancer 12/7/12.  Looks like Stage 3. Finished chemoradiation program on 2/13).  5FU alone is not too bad (it just helps the radiation be more effective).  There is a lengthy list of potential side effects, but I did a lot of research and the % of people who actually get the side effects from straight 5FU is about 30%, The only ones I experienced - and not for several weeks in to it, were a bit of diahrrea, very minimal nausea, and general fatigue.  Of course, everyone is different - but you are young, strong, and healthy (mostly...).   However, the effects of the radiation are cumulative, so you will likely be more tired toward the end from that.   I worked full time during chemoradiation, SO BE ENCOURAGED!  Now I'm just recuperating from the internal effects of the radiation and getting ready to schedule my surgery for 6-8 weeks out.  Take it one day at a time. I'll be praying for you! You can do it!

    you definetly make me feel

    you definetly make me feel better knowing you went thru the same thing i am now and am praying i do not get side effects too bad i can deal with a few but the list was long, I am sleepy but force myself to go for walks to get blood flowing. I have to goto my radiation tx i will keep you guys updated

  • herdizziness
    herdizziness Member Posts: 3,624 Member

    hey thanks I got all hooked

    hey thanks I got all hooked up, and radiation I am feeling ok so far I assume the side effects wont start til tomorrow. I have been drinkin lots and eating lots, tryin to get my weight up :)Chemo pump

    Don't worry too much

    about those side affects list.  Chances are you will get very few of them.  So here's hoping you are on the good side of side affects and on the road to recovery!!!

    Winter Marie

  • YoVita
    YoVita Member Posts: 590 Member

    hey thanks I got all hooked

    hey thanks I got all hooked up, and radiation I am feeling ok so far I assume the side effects wont start til tomorrow. I have been drinkin lots and eating lots, tryin to get my weight up :)Chemo pump

    Great picture!

    You remind me of my son.  I did surgery/chemo/radiation/chemo and am here to tell you you'll do fine.  Do keep up with liquids and eating - a little at a time if necessary.  

    Best, Vita