walking, hi i am new to site

ccartwri
ccartwri Member Posts: 82
edited March 2014 in Colorectal Cancer #1
my name is claudia and i am 34 and was recently diagnosed with rectal cancer. i am in my 4th week of chemo radiation with oral xeloda that i have had to be off of twice already because of low white blood cell counts. i hate being off of it as i do not want to give the tumor a chance but am being told if my WBC are low, xeloda is still working and the concentration is greater in tumor. my tumor is low lying thus i may have to have a perm colostomy and will not know until i awaken from sx. i am receiving tmt at NIH on a TNFerade trial and hope to have sx at Johns Hopkins if I can make it thru my insurance obstacles. i wanted to introduce myself and tell you i am open to any advice. what is this about walking? i have been feeling awful so have not exercised but am getting ready to start walking. is the walking advice in reference to right before surgery???
i have been having symptoms since January but was pregnant (had a beautiful baby girl April 2) so was misdiagnosed as hemorrhoids and constipation until may 27. i try not to focus on all the time passed and am very anxious about the time passed and spread of this disease. i am stage 3 with LN involved on one side.
«1

Comments

  • CAMaura
    CAMaura Member Posts: 719 Member
    #2
    Welcome Claudia!!

    Congrats on the birth of a beautiful little angel, and so pleased to read your post. I am no expert, but I think that the walking is spoken about for general well-being: boosting circulation, working the excess chemicals out of one's system, an antidote to fatigue, and a call to 'smell the roses'. Any form of exercise seems to help, but walking is such great start.

    Best of luck to you and I hope you post often. Have a great Fourth!!

    Cheers,
    Maura
  • tkd3g
    tkd3g Member Posts: 767
    #3
    Hi Claudia.

    First off, CONGRATULATIONS on your beautiful baby girl. Ahh, I love newborns.

    Welcome to this awesome site. No one wanted to be here, but all are happy they came to visit.

    I , too, was diagnosed with stage 3 rectal cancer. No lymph involvement ( actually, possible, but it's a long story)

    I had 6 weeks chemoradiation with 5FU. So, I am not familiar wwith Xeloda.

    Walking is wonderful. I think Maura said it well.

    I wanted to add, when you have surgery, walking is so important. Again, for the same reasons that Maura stated. Added to that, it "wakes" up your body after the surgery, gets everything moving again ( including your bowels that will " sleep" for a few days after surgery) and the nurses will make you do it.

    It aides in a quicker recovery, quicker discharge , and quicker healing. I walked all the time in the hospital. Got out 3 or 4 days early.

    Best of luck with your treatments.

    This is a great site. Come often and meet the gang.

    Barb ( who is celebrating 1 year cancer free!)
  • kerry
    kerry Member Posts: 1,313 Member
    #4
    Hi Claudia,

    Welcome to an awesome site. We will try to help you through treatment and recovery as best we can. We have lots of experience here and lots of advice.

    Congratulations on the birth of you daughter.

    I am also on Xeloda and have been for 7 months. My doctor has given me a 2 week "rest" period from taking it to let my feet heal. My only side effects are my feet and toenails. Otherwise, I have tolerated this drug very well.

    Take care and let us know how you are doing. Walk as much as you can - Barb's advice is good - walking will help the healing process.

    Take care.

    Kerry
  • nanuk
    nanuk Member Posts: 1,358 Member
    #5
    Hi Claudia: Welcome to the world of survivors; what is TNFerade trial? And sx?
    Be sure and create a web site so we can see you and new baby girl.. Nanuk
  • themis01
    themis01 Member Posts: 167
    #6
    Have the doctors considered the neulasta shot for your white blood counts?
  • MoonDragon
    MoonDragon Member Posts: 183
    #7
    Hi Claudia!! Welcome to the group! I just wanted you to know I was 33 when diagnosed and I'm 39 now. Keep hanging in there!! Congrats on your baby!! She's reason enough to fight with all you've got!
    hugs!
    MoonDragon
  • bsrules
    bsrules Member Posts: 296
    #8
    Claudia,

    Congratulations on the arrivial of your new baby!!!! It must be tough dealing with a newborn and going through treatments!!! My hat is off to you!!!!!

    I can't add much but agree with everyone else about the walking!!!!! It will do the body good!!!! Hang in there and take one day at a time!!! Give you new baby a GREAT big hug from your new friends!!!! Let us know how you are doing!!!!

    Best Wishes and Prayers coming your way!!!!

    Sue
  • taraHK
    taraHK Member Posts: 1,952 Member
    #9
    Hi Claudia, and welcome. I also was diagnosed with low rectal cancer, stage III, one lymph node affected. I ended up with a permanent colostomy (didn't know for sure till after surgery, but knew it was a likely possibility). I had 5 weeks of chemoradiation before surgery. If you are able to walk now, it might be good, for the reasons others have mentioned (overall health and well-being). But you may be too tired or sore from the radiation....The "obsession" with walking you see on this board is more related to after surgery -- and I am one of those who advocates it. It's important to rest and be good to yourself and listen to your own body. But, walking regularly does seem to help with the healing. I hope you don't end up with a permanent colostomy but, if you do, my opinion is that it is not that big a deal. Yes, it is an adjustment -- but, one does adjust -- and I can do everything now I did before the surgery.
    All the best to you. Give that baby girl a big kiss from me!
    Love, Tara
  • jana11
    jana11 Member Posts: 705
    #10
    Hi Claudia, sorry you are here, but welcome. I was 32 yrs old when diagnosed with stage 3 rectal cancer. I am now 35. I have a permanent ostomy because of the tumors location.

    Congratulation on your daughter. Allow her to be a driving force in your battle.

    I had xeloda + radiation for 5 weeks before surgery. Then the surgery, yep, got the ostomy; then 4 months of xeloda + CPT 11.

    When is your surgery sched? I will send you some good tips to get to make surgery and recovery a little easier. Walking now and after is very important. I even started yoga before my surgery and I still do it. My surgeon told me my wonderful recovery and lack of pain must be in part to my yoga and exercises. I simply got a DVD and did what was comfortable at home.

    Hang in there. We are always here for you! jana
  • ccartwri
    ccartwri Member Posts: 82
    #11
    nanuk said:

    Hi Claudia: Welcome to the world of survivors; what is TNFerade trial? And sx?
    Be sure and create a web site so we can see you and new baby girl.. Nanuk

    sx is short for surgery. I am in an NIH trial where I get radiation daily and Xeloda (oral preparation of 5FU) daily 5 days a week plus the investigational treatment of TNFerade. They inject the TNFerade (synthetic to your body's TNF alpha, tumor necrosis factor, which your body uses constantly to kill cancer cells) into the tumor one time a week under sedation for 5 weeks. The intent is to see if the tumor shrinks more than with the chemoradiation alone in another group. If you want more info, i can send it when my email is working as it down for the long weekend. The NIH has been great and I am really lucky to have had them available to me as I live in the DC area, as I do not trust the doctors with Kaiser anymore. That is my insurance HMO and I hate dealing with them. I recently consulted a malpractice attorney who said unfortunately I have no case as it is difficult to prove harm. You must prove negligence AND harm. I have been having blood in my stool for months. And I had a sigmoidoscopy where he saw NOTHING as he passed the mass right up.
  • ccartwri
    ccartwri Member Posts: 82
    #12
    Thanks for all the great replies everyone!!!
    I look forward to chatting often as I am very scared and needy!!! To see pics of my baby girl, go to
    http:homepage.mac.com/fletch.lives
  • ccartwri
    ccartwri Member Posts: 82
    #13
    tkd3g said:

    Hi Claudia.

    First off, CONGRATULATIONS on your beautiful baby girl. Ahh, I love newborns.

    Welcome to this awesome site. No one wanted to be here, but all are happy they came to visit.

    I , too, was diagnosed with stage 3 rectal cancer. No lymph involvement ( actually, possible, but it's a long story)

    I had 6 weeks chemoradiation with 5FU. So, I am not familiar wwith Xeloda.

    Walking is wonderful. I think Maura said it well.

    I wanted to add, when you have surgery, walking is so important. Again, for the same reasons that Maura stated. Added to that, it "wakes" up your body after the surgery, gets everything moving again ( including your bowels that will " sleep" for a few days after surgery) and the nurses will make you do it.

    It aides in a quicker recovery, quicker discharge , and quicker healing. I walked all the time in the hospital. Got out 3 or 4 days early.

    Best of luck with your treatments.

    This is a great site. Come often and meet the gang.

    Barb ( who is celebrating 1 year cancer free!)

    xeloda is oral preparation of 5fu . i am not sure what i will have as adjuvant chemo after radiation but likely folfox or what i think is oxy, 5fu, and leucovorin.
    Thanks for your encouragement.
  • ccartwri
    ccartwri Member Posts: 82
    #14
    themis01 said:

    Have the doctors considered the neulasta shot for your white blood counts?

    no. i do not know anything about it. did you use it? i asked about neupogen but they are not keen on the idea as they say it causes the count to rollercoaster. i do not know if perhaps it is not allowed in the research protocol as i am in a study. i do not think they would withold something that would help me but i have been second guessing everyone lately.
  • ccartwri
    ccartwri Member Posts: 82
    #15
    jana11 said:

    Hi Claudia, sorry you are here, but welcome. I was 32 yrs old when diagnosed with stage 3 rectal cancer. I am now 35. I have a permanent ostomy because of the tumors location.

    Congratulation on your daughter. Allow her to be a driving force in your battle.

    I had xeloda + radiation for 5 weeks before surgery. Then the surgery, yep, got the ostomy; then 4 months of xeloda + CPT 11.

    When is your surgery sched? I will send you some good tips to get to make surgery and recovery a little easier. Walking now and after is very important. I even started yoga before my surgery and I still do it. My surgeon told me my wonderful recovery and lack of pain must be in part to my yoga and exercises. I simply got a DVD and did what was comfortable at home.

    Hang in there. We are always here for you! jana

    tara and jana: i am interested in getting more input from you regarding the ostomy as i am finding myself quite scared about it. the bigger fear though is having cancer left in or spreading. jana, i have the same scheduling as you. i will have a 4-8 wk waiting period between chemoradiation and surgery as the surgeon sees fit. that is, he/she may think the tumor could use more time to shrink.
    what is cpt11?
  • aspaysia
    aspaysia Member Posts: 250
    #16
    ccartwri said:

    Thanks for all the great replies everyone!!!
    I look forward to chatting often as I am very scared and needy!!! To see pics of my baby girl, go to
    http:homepage.mac.com/fletch.lives

    Hi, Claudia. Just saw your website. Great pix. I love looking at families and yours is very handsome, indeed. I can tell the baby really likes her bath. She is a dolll and very lucky to be surrounded by doting grandparents, aunts and uncles, dogs, etc. Is she completely spoiled yet?It won't take long with all those people around.
    Sorry you have to be here but glad you came to us. We try to have a bit of fun while fighting our way back to health. Take that baby for walks. And the dog, too. Good exercise for everyone.
    Aspaysia, who loves to wheel her niece around the neighbourhood and check out all the gardens.
  • kerry
    kerry Member Posts: 1,313 Member
    #17
    ccartwri said:

    Thanks for all the great replies everyone!!!
    I look forward to chatting often as I am very scared and needy!!! To see pics of my baby girl, go to
    http:homepage.mac.com/fletch.lives

    Claudia,

    Your website is FABULOUS! What a beautiful baby. We will all be here for you and get you through this treatment and recovery. You got lots of reasons to fight on.

    Kerry
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #18
    nanuk said:

    Hi Claudia: Welcome to the world of survivors; what is TNFerade trial? And sx?
    Be sure and create a web site so we can see you and new baby girl.. Nanuk

    I'll bet you thought she was having sex at the hospital.

    :-0

    Welcome Claudia!!

    BABIES! How wonderful that you have a little one. My bambino was 20 months old at the time of my dx. I didn't do any chemo (Stage 3 sigmoid colon cancer lymph pos zero mets) therefore I could continue nursing her. :-)

    Can you believe you're so young with rectal cancer?? I was 39 at dx (my sister was 29 at her dx) and they figured my tumor was in there for up to 10 years.

    So sorry you are having to go through this especially right after having a baby. Don't you just hug her and are amazed at your little miracle who was born while you were ill and didn't know it? I sure did!

    peace, emily who has 5 babies! (the oldest being 19)
  • Unknown
    Unknown
    #19
    This comment has been removed by the Moderator
  • Kaye2003
    Kaye2003 Member Posts: 86
    #20
    My husband was dx with rectal cancer l0/03. Five weeks xeloda and radiation with sat/sun off. We were told definite colostomy. He had surgery 2/04, tumor had shrank so small he didn't need the colostomy. Did 4 months with 3weeks on/ one off with xeloda after surgery. 3/05 still cancer free. We owe this blessing to God and a great support system and great doctors. We just feel blessed everyday because one never knows what tomorrow will bring. You just pray you have the courage and strenght to face it.
    You will be added to my prayers.
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #21
    Kaye2003 said:

    My husband was dx with rectal cancer l0/03. Five weeks xeloda and radiation with sat/sun off. We were told definite colostomy. He had surgery 2/04, tumor had shrank so small he didn't need the colostomy. Did 4 months with 3weeks on/ one off with xeloda after surgery. 3/05 still cancer free. We owe this blessing to God and a great support system and great doctors. We just feel blessed everyday because one never knows what tomorrow will bring. You just pray you have the courage and strenght to face it.
    You will be added to my prayers.

    Hiya Claudia from the resident ozzies in this great CSN family.....welcome. Hey...congrats on the babe...loved your site..brought back some memories here. And ain't dad tha proud one too!!!
    Sorry you have to be here gal but at least you know now that "loneliness" with our disease is not in the dictionary.
    I too was mis-dx'd....back in 97. My surgery removed the descending and sigmoid colon. It was originally dx'd the same as yours back then.....those pesky little veins bleeding. It was not found until 2003...too late.Geez....so many have had haemharoids mask cancer!
    Keep us informed how things are doin Claudia....no secrets here.
    huggs, kanga n Jen

Discussion Boards