New to group

chuckneddi
chuckneddi Member Posts: 12
edited March 2014 in Colorectal Cancer #1
I would like to become one of your semicolons. I was diagnosed with stage 4 colon cancer in 6/03. Had a resection, lost ovaries some lymph nodes and it has metzed to my liver. I am currently on the new oxcilaplatin, 5 FU, and Lewcovourin. I have treatments every other week. I also get neulasta shots to keep up my white blood cell count. I would like to go back to work, but my docs say no. Too dangerous at this point. It's very cold here in Pittsburgh, and with the new treatment I can't go out. Ok, enough complaing. I am also waiting to get new CT and Pet scans. They should be scheduled the end of Feb. or the beginning of March. I'm scared, and I'm tired of waiting for the docs to tell me the next thing I have to do.
Do I qualify for the semicolons?
Michelle
«1

Comments

  • nanuk
    nanuk Member Posts: 1,358 Member
    #2
    You qualify..I'm starting a similar protocol in about a week, and would be happy to compare notes..
    I agree; waiting is probably the worst thing.. make sure you register so you can send mail, ect.. Bud
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #3
    Welcome to the semi-colons. I'm sure the other members will be around shortly to give the ahoy welcome but wait I think he may be at Happy Hour. But don't mind SB cuz he has this thing with blueberries...he's really quite harmless.

    Stacy will be a wonderful resource for you since she is our stellar Stage 4 Survivor.

    I, on the other hand will plague you like chickenpox and will keep popping up here and there to tell you to juice your carrots and get off sugar and dairy and meat while you are trying to rid yourself of this cancer bugger.

    I will also direct you to some websites that may give you a new outlook to healing cancer:

    www.curezone.com
    www.hacres.com
    wwwdrday.com
    www.healthquarters.org
    www.gardenoflifeusa.com

    We are a whacky group thrown together by the sheer force of our hinders. But we are a very nice bunch since there's not an a$$hole among us.

    peace, emily the granola babe
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #4
    Welcome Michelle!

    Yes, we are a loony bunch, but all very supportive and usually helpful. Scans can be scary but at least by getting informed, you know what you have to do. Staying in the dark about your condition will only make things worse, since you won't be addressing them.

    We're all here for you!

    Stacy
  • pattieb
    pattieb Member Posts: 168
    #5
    Hi Michelle
    We met in the chat room. I am also stage 4 was dx 6/02 had emergercy surgery went thru chemo then they found 2 spots on my cervix and had rad wfFU/lev then they found 2 small spots in my lung and 2 more on my cervix I am now going thru the same treatment as you I will have my second one this comming monday. I was also in a reseach program but had to quit made me to sick. I don't get the shots as my blood is good. But I know what you mean about going out. I also can't go in the freezer to get anything out without my handy oven mitt. You certaintly qualify as a semicolon. You will hear from SB and Stacy soon and you have already heard from our res smoothie Em. lol
    Keep us posted on how things are going.
    Pattie
  • chuckneddi
    chuckneddi Member Posts: 12
    #6
    pattieb said:

    Hi Michelle
    We met in the chat room. I am also stage 4 was dx 6/02 had emergercy surgery went thru chemo then they found 2 spots on my cervix and had rad wfFU/lev then they found 2 small spots in my lung and 2 more on my cervix I am now going thru the same treatment as you I will have my second one this comming monday. I was also in a reseach program but had to quit made me to sick. I don't get the shots as my blood is good. But I know what you mean about going out. I also can't go in the freezer to get anything out without my handy oven mitt. You certaintly qualify as a semicolon. You will hear from SB and Stacy soon and you have already heard from our res smoothie Em. lol
    Keep us posted on how things are going.
    Pattie

    Hi Pattie;

    This new treatment has been much kinder to me than the last with the camptosar. I'm careful about the cold, but that seems to be the worst and living in Pittsburgh with all this snow and ice we have really had to make some changes. All in all I feel well. When they did my first surgery they took everything out. They were going to do radiation and then changed their minds. I did lose my hair with the first protocol, but have not lost it this time. In fact it is coming in quite nicely. Although much darker than it was originally. I'm glad I found you guys. It seems like all I could find was info on breast or general cancer questions. You guys are a true find.

    Michelle
  • chuckneddi
    chuckneddi Member Posts: 12
    #7
    nanuk said:

    You qualify..I'm starting a similar protocol in about a week, and would be happy to compare notes..
    I agree; waiting is probably the worst thing.. make sure you register so you can send mail, ect.. Bud

    Hi Bud

    I think you will be quite surprised. The oxciliplatin goes down much easier than the camptosar. I found not as much fatigue, and was able to eat without much problems. Just be careful of the cold.

    Michelle
  • spongebob
    spongebob Member Posts: 2,565 Member
    #8
    pattieb said:

    Hi Michelle
    We met in the chat room. I am also stage 4 was dx 6/02 had emergercy surgery went thru chemo then they found 2 spots on my cervix and had rad wfFU/lev then they found 2 small spots in my lung and 2 more on my cervix I am now going thru the same treatment as you I will have my second one this comming monday. I was also in a reseach program but had to quit made me to sick. I don't get the shots as my blood is good. But I know what you mean about going out. I also can't go in the freezer to get anything out without my handy oven mitt. You certaintly qualify as a semicolon. You will hear from SB and Stacy soon and you have already heard from our res smoothie Em. lol
    Keep us posted on how things are going.
    Pattie

    Ahoy, Michelle -

    You can only become a semicolon if you swear undying allegience to the Cleveland Browns and completely renounce the Steelers! (can you tell I grew-up in Cleveland? - Don't listen to emily, she'll tell you I never grew up)

    Welcome to the club! Anytime you feel scared or tired or fed up, just drop in and we'll cheer ya up - or at least try!

    And, BTW, don't listen to a thing emily says about me - none of it's true.

    - SpongeBob (SB)
  • jsabol
    jsabol Member Posts: 1,145 Member
    #9
    Hi Michelle,
    As a former Pittsburgher, maybe we can form a sub group of semi-colons?? Any way, I'm in Boston now and have switched allegiances to the Patriots. (sorry SB!) Are you getting your tx's at UP Med Center? I'm just a rookie, resection surgery 12/03, with 1 postive node, now onto tx #5 with 5FU and leuco. The fatigue is hitting like a ton of bricks, but my blood levels were all holding. The cold is something this year....we've been below freezing for 10 days now, and below zero some nights.(Just heard on the news that it's the coldest January in 80 years!) So stay warm, and find something pleasurable to do while waiting for those scans. I think that the "waiting" is now a part of all our lives...waiting for the tx's to be over, waiting for the results of the scans, etc. In the meantime, it has become clear to me that each day is precious, at least we've been given a reminder of that. Hang in there. Judy
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #10
    jsabol said:

    Hi Michelle,
    As a former Pittsburgher, maybe we can form a sub group of semi-colons?? Any way, I'm in Boston now and have switched allegiances to the Patriots. (sorry SB!) Are you getting your tx's at UP Med Center? I'm just a rookie, resection surgery 12/03, with 1 postive node, now onto tx #5 with 5FU and leuco. The fatigue is hitting like a ton of bricks, but my blood levels were all holding. The cold is something this year....we've been below freezing for 10 days now, and below zero some nights.(Just heard on the news that it's the coldest January in 80 years!) So stay warm, and find something pleasurable to do while waiting for those scans. I think that the "waiting" is now a part of all our lives...waiting for the tx's to be over, waiting for the results of the scans, etc. In the meantime, it has become clear to me that each day is precious, at least we've been given a reminder of that. Hang in there. Judy

    Hey I had an adorable boyfriend in college from Pittsburgh. Frank Ruffing. Do you know him? lol

    peace, emily the blue and orange chick
  • jsabol
    jsabol Member Posts: 1,145 Member
    #11
    2bhealed said:

    Hey I had an adorable boyfriend in college from Pittsburgh. Frank Ruffing. Do you know him? lol

    peace, emily the blue and orange chick

    Em, I am probably old enough to be your ex-bf's mother. There were plenty of adorable guys in Pittsburgh even back in geezer days, but sorry, no Ruffings Judy
  • bryancarson
    bryancarson Member Posts: 47
    #12
    I am new to the group also. So, we are in the same boat. I am a stage 3 survivor and had 18" of my colon removed in 12/02. I also had a colostomy, but I had that reversed at the end of my treatment in 10/03. That day, along with the end of chemo were the best days of my life -- maybe not the best, but they were banner days. Be sure to ask the Docs lots of questions. Write them down before you go in, otherwise, you may forget to ask some of them. You will learn to love smoothies, ice cream (non-dairy, no sugar added variety) I guess that may not sound good now, but it will soon! Another helpful hint is this: normally a low carb diet will plug you up, but with the 5FU and leuco, it will keep you just about regular. I worked through my treatment and I would adivse you STRONGLY against it. I wish I had allowed myseslf the rest becuase I really needed it.

    So, If they will allow you to be a semi-colon, I hope they will allow me to become one also.
  • spongebob
    spongebob Member Posts: 2,565 Member
    #13
    jsabol said:

    Em, I am probably old enough to be your ex-bf's mother. There were plenty of adorable guys in Pittsburgh even back in geezer days, but sorry, no Ruffings Judy

    For the record, ladies, the MOST adorable bf's come from CLEVELAND! (think Drew Carey)
  • chuckneddi
    chuckneddi Member Posts: 12
    #14
    bryancarson said:

    I am new to the group also. So, we are in the same boat. I am a stage 3 survivor and had 18" of my colon removed in 12/02. I also had a colostomy, but I had that reversed at the end of my treatment in 10/03. That day, along with the end of chemo were the best days of my life -- maybe not the best, but they were banner days. Be sure to ask the Docs lots of questions. Write them down before you go in, otherwise, you may forget to ask some of them. You will learn to love smoothies, ice cream (non-dairy, no sugar added variety) I guess that may not sound good now, but it will soon! Another helpful hint is this: normally a low carb diet will plug you up, but with the 5FU and leuco, it will keep you just about regular. I worked through my treatment and I would adivse you STRONGLY against it. I wish I had allowed myseslf the rest becuase I really needed it.

    So, If they will allow you to be a semi-colon, I hope they will allow me to become one also.

    Congratulations on the reversal and the end of the chemo. Sounds like a winner. The docs do not want me to work through my treatment. I don't honestly thing I could. Fortunately for me a lot of my coworkers have been donating sick time and I continue to get paid as well as keep my benefits. What a wonderful thing.

    MIchelle
  • chuckneddi
    chuckneddi Member Posts: 12
    #15
    spongebob said:

    Ahoy, Michelle -

    You can only become a semicolon if you swear undying allegience to the Cleveland Browns and completely renounce the Steelers! (can you tell I grew-up in Cleveland? - Don't listen to emily, she'll tell you I never grew up)

    Welcome to the club! Anytime you feel scared or tired or fed up, just drop in and we'll cheer ya up - or at least try!

    And, BTW, don't listen to a thing emily says about me - none of it's true.

    - SpongeBob (SB)

    I am not a football fan. But my partner is. And she likes the Browns. It's nice to have a place to come to when I'm feeling a little down. And may also be able to help someone else out. Thanks SB.

    Michelle
  • chuckneddi
    chuckneddi Member Posts: 12
    #16
    StacyGleaso said:

    Welcome Michelle!

    Yes, we are a loony bunch, but all very supportive and usually helpful. Scans can be scary but at least by getting informed, you know what you have to do. Staying in the dark about your condition will only make things worse, since you won't be addressing them.

    We're all here for you!

    Stacy

    Ok Stacy, they tell me that you are the stage 4 survivor. Can you fill me in?

    Michelle
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #17
    spongebob said:

    For the record, ladies, the MOST adorable bf's come from CLEVELAND! (think Drew Carey)

    bf's?? Breast Feeders?
  • spongebob
    spongebob Member Posts: 2,565 Member
    #18
    chuckneddi said:

    I am not a football fan. But my partner is. And she likes the Browns. It's nice to have a place to come to when I'm feeling a little down. And may also be able to help someone else out. Thanks SB.

    Michelle

    No doubt you will help someone else out, Michelle - and you should bring your partner along, too! A lot of folks here aren't the survivors, they're the partners of survivors. (and a couple of them are the designated typists for technophobic husbands who refuse to learn how to type - right Monika?)
  • spongebob
    spongebob Member Posts: 2,565 Member
    #19
    2bhealed said:

    bf's?? Breast Feeders?

    "bf" was Judy's abbreviation... I merely repeated it figuring it was a common acronym amongst those of the fairer gender. Obviously you slept through that part of the staff meeting!

    As far as your suggested meaning for "bf" - not with a ten foot pole, em!
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #20
    chuckneddi said:

    Ok Stacy, they tell me that you are the stage 4 survivor. Can you fill me in?

    Michelle

    Hi (again) Michelle,

    Yep...I WAS stage 4, and now all clear. During my 10 hour surgery, it was discovered that it spread to my liver. They removed 40% of my liver, and my gall bladder, just for kicks. Also two lymph nodes tested positive. I had chemo and radiation prior to surgery, which really ticked me off to learn it spread to my liver. I figured by having those things before surgery, everything would be reduced, not spread. Regardless...I had a temporary ileostomy. It was reversed after 6 months of clean up chemo. I am proud to say that I had no side effects of any of this. A few of my sisters told me I should milk it for attention, but that isn't my style. I still have my port a cath, and will remove it on my 5 yr anniversary.

    In all honestly, unless you knew me, you would not even have known I was sick. I never cried once throughout my whole experience, but admittedly, I did cry some really joyful tears when my surgeon said he no longer has to see me, and that my only follow up will be with my oncologist. I think that is when reality hit, and the seriousness of everything really struck home.

    There you have it...the Cliff Notes version of the Stacy saga...hope I didn't bore you to sleep!

    Take care of yourself,

    Stacy
  • Cully
    Cully Member Posts: 8
    #21
    I too am new to this group, but have gotten so much great information and inspiration, there's no way they can kick me out now. If having a resection qualifys people for the semicolons club, then we're In like Flynn. Hard club to join...not just everyone has the guts to go through with it (pun intended).

    Glad you get the time off, I worked through all my chemo and radiation, then after the resection and more chemo, I went right back to work. I'm still fighting some side effects, and my doc said I should've taken more time off to let my colon rest more...he wanted no stress for me. In my mind I figured it meant I was doing better. Looking back I should've taken the time off.

    As for being scared, there's a moment each day when a feeling, a comment, or even a smell (I work in a hospital) triggers a thought that what if...???..then I log on and see that I'm not the only one that feels that way. There are so many other semicolons that have great remedies and stories that help me make it another day.
    Keep posting, and best of luck. Cully

Discussion Boards