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stage4 lurker here. want to talk a little

flyguide
flyguide Member Posts: 27
edited March 2014 in Colorectal Cancer #1
i am in stage4 rectal cancer. spred to lung for sure and mybe liver and possably bone. Im in 4th round of chemo now. rough nite lasy night pukeing but im better this am. my doc told me im doing fine cuz im getting out alot pay a little 9 hole golf course..he told me im in top 10% of patients but also said i would be on chemo rest of my life..wow..i wanted to know anything about the pill chemo treatments that i will need after i beat down this monster..thanks for listening fly

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364
    Welcome
    So sorry for the reason you are here but glad you have joined in the discussions.

    I can't help you with your medical questions, but am sure others will chime in.

    It is good that you are able to stay active.

    Take care and keep swinging for par!

    Marie who loves kitties
  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    Xeolda
    First welcome to the boards, but sorry you had to join our club. We are a great group of people here to help you through your journey. Xeolda is the pill form of chemo. People complain of hand/foot syndrome with this form of chemo, while others don't have many side effects. My dosage was pretty low compared to some and really had no problems on it. Glad that you are able to get out and do some golfing. If you are able to stay active, that is better for you and also helps keep your mind on something other than your disease. Good luck on your treatments and tell your doctor about throwing up, they can give you something for it. You shouldn't be miserable when there are things out there to help you.

    Kim
  • flyguide
    flyguide Member Posts: 27

    Xeolda
    First welcome to the boards, but sorry you had to join our club. We are a great group of people here to help you through your journey. Xeolda is the pill form of chemo. People complain of hand/foot syndrome with this form of chemo, while others don't have many side effects. My dosage was pretty low compared to some and really had no problems on it. Glad that you are able to get out and do some golfing. If you are able to stay active, that is better for you and also helps keep your mind on something other than your disease. Good luck on your treatments and tell your doctor about throwing up, they can give you something for it. You shouldn't be miserable when there are things out there to help you.

    Kim

    thanks anna
    thanks for talking to me. so good to talk to other cancer fighters..were u able to eat easier on the pills? was ur appitite better, gain weight back? i shudder at the thought of lifelong chem but can get my head around it im sure..just new news to me..sean
  • damama24
    damama24 Member Posts: 174
    flyguide said:

    thanks anna
    thanks for talking to me. so good to talk to other cancer fighters..were u able to eat easier on the pills? was ur appitite better, gain weight back? i shudder at the thought of lifelong chem but can get my head around it im sure..just new news to me..sean

    I'm a stage 4 lurker too
    I was dx'd in August of 09 with stage4 colon cancer with mets to liver and have been on chemo ever since. Just had my 28th round of chemo last week. I have been told I'm inoperable and will be on chemo forever.
    I started out on FOLFOX but oncologist switched me to Iriontecan and Vectibix because of severe neuropathy caused by oxiliplatin. I've done well on this combo but am still struggling with the chemo forever thing.
    It is wonderful that you have been able to stay active. But please tell your onc if you are having difficulties with nausea and vomiting. There are lots of things to help with that. As far as appitite goes mine was poor on FOLFOX and I lost weight. Since starting on the Iriontecan and Vectibix my appitite is back and I have gained weight.
    I hope you continue to do well.

    Deb
  • pepebcn
    pepebcn Member Posts: 6,331
    flyguide said:

    thanks anna
    thanks for talking to me. so good to talk to other cancer fighters..were u able to eat easier on the pills? was ur appitite better, gain weight back? i shudder at the thought of lifelong chem but can get my head around it im sure..just new news to me..sean

    Hi fly !
    l Only can welcome you to the board as I had no experience with Xeloda!
    Hugs!
  • plh4gail
    plh4gail Member Posts: 1,238
    Hi I am new on here also,I
    Hi I am new on here also,I had a low dose of 5fu and haven't got to my next chemo yet. I know you will get so much infor from the other's. Stay active, it helps keep your spirit up I think.

    Gail
  • annad723
    annad723 Member Posts: 44

    Xeolda
    First welcome to the boards, but sorry you had to join our club. We are a great group of people here to help you through your journey. Xeolda is the pill form of chemo. People complain of hand/foot syndrome with this form of chemo, while others don't have many side effects. My dosage was pretty low compared to some and really had no problems on it. Glad that you are able to get out and do some golfing. If you are able to stay active, that is better for you and also helps keep your mind on something other than your disease. Good luck on your treatments and tell your doctor about throwing up, they can give you something for it. You shouldn't be miserable when there are things out there to help you.

    Kim

    Xeloda clinical trial
    Hi Annabelle,

    I too am a StageIV cancer patient. I am currently taking Xeloda with/without perifosine. Since this is a clinical trial, I am unsure about the perifosine. I have had minimal side effects from the Xeloda. As a matter of fact, in the 2 yrs. I've been on chemo, all the side effects were quite manageable. Losing my hair was horrible, but it has come back. A 30lb. weight gain is also very upsetting.

    I just had a CAT scan that showed everything is stable. But new blood work is showing my CEA level rising from 2 to 10. I will see my doctor in NY tomorrow, but am honestly very concerned. I don't understand how a CAT scan looks stable, and then bloodwork is not.

    Are you still on Xeloda? How are your treatments going or are you done with treatments. I am anxious to hear from other stage IV patients. I've been dealing with this horrible disease for 2 years now, but I guess I'm still here right?

    Looking forward to a reply--(I don't have a picture yet. Have to wait until my sons get home from college so they can show me how to do it. LOL)!!!!!!!!!!!!!!!!
  • geotina
    geotina Member Posts: 2,111
    HI
    Welcome to the board. My hubby is also Stage IV, liver and lung mets, diagnosed 3/09, did Folfox and then went on to maintenance chemo to continue shrinking mets and keep things stable. He, also, will most likely be on one sort of treatment or another forever. Never had the pill chemo. He continues to work full time, enjoys the same things he did before, fatigue is his enemy. I will admit though he is getting tired of this mess but vows to continue to do what he has to. I won't lie to you, it is a tough road for the patient and caregiver, but it is the hand we have been dealt and my George continues to go forward. If you are not getting anti-nausea drugs before the chemo ask for it. George got Anzamet (sp). He never experienced nausea or vomiting.

    Take care and ask any questions that come to mind and someone will be on with their experience.

    Tina
  • AnneCan
    AnneCan Member Posts: 3,673
    Hi flyguide
    Welcome to the forum. You have come to a great place. Are you a flyfishing guide? Sorry I haven't been on pill chemo. Others will be more helpful.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    flyguide said:

    thanks anna
    thanks for talking to me. so good to talk to other cancer fighters..were u able to eat easier on the pills? was ur appitite better, gain weight back? i shudder at the thought of lifelong chem but can get my head around it im sure..just new news to me..sean

    Weight
    Weight never changed and never really never had any side effects from it, although putting lotion on feet and hands were about the only thing that had to be done. Remember, my dosage was only 2,000 mg (or whatever) a day. Never lost weight on the chemo pill. Your doctor should always be aware of what you are feeling, which I'm hoping that you will do fine.

    Kim
  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    annad723 said:

    Xeloda clinical trial
    Hi Annabelle,

    I too am a StageIV cancer patient. I am currently taking Xeloda with/without perifosine. Since this is a clinical trial, I am unsure about the perifosine. I have had minimal side effects from the Xeloda. As a matter of fact, in the 2 yrs. I've been on chemo, all the side effects were quite manageable. Losing my hair was horrible, but it has come back. A 30lb. weight gain is also very upsetting.

    I just had a CAT scan that showed everything is stable. But new blood work is showing my CEA level rising from 2 to 10. I will see my doctor in NY tomorrow, but am honestly very concerned. I don't understand how a CAT scan looks stable, and then bloodwork is not.

    Are you still on Xeloda? How are your treatments going or are you done with treatments. I am anxious to hear from other stage IV patients. I've been dealing with this horrible disease for 2 years now, but I guess I'm still here right?

    Looking forward to a reply--(I don't have a picture yet. Have to wait until my sons get home from college so they can show me how to do it. LOL)!!!!!!!!!!!!!!!!

    Treatment
    No I'm off of Xeloda, but had radiation at the same time, then surgery and more chemo, but it is all done. Wasn't stage IV so my treatment will be different from you, but glad that you are checking out your new levels. Good luck with your doctor.

    Kim
  • Kenny H.
    Kenny H. Member Posts: 502
    AnneCan said:

    Hi flyguide
    Welcome to the forum. You have come to a great place. Are you a flyfishing guide? Sorry I haven't been on pill chemo. Others will be more helpful.

    Welcome Flyguide! love to
    Welcome Flyguide! love to fish myself...Where you from?

    I did the Xeloda pill form daily along with 28 rds of radiation.(stage 3a though) Side effects werent bad, never lost hair or appetite. Just some slight stinging in feet at the last week of treatment then. Doing infusions now,(sucks) hope you can get nausea meds and better luck with Xeloda pill form.
  • tootsie1
    tootsie1 Member Posts: 5,036
    Hi
    I'm not Stage 4, but I want to welcome you to the board. You'll find lots of people here who can help you through this.

    *hugs*
    Gail
  • herdizziness
    herdizziness Member Posts: 3,624
    Hello Flyguide
    So, your into fly fishing or bushpilot flying?
    As for the Xeloda (chemo pills)I'm guessing I'm the Xeloda Queen here, I love Xeloda, I took the maximum dose, 1500 mgs in morning 1500 mgs in evening for 14 days, 7 days off.
    I have been on Xeloda alone, and had no side effects, other then tingling in tips of fingers and tips of toes, and I'm not sure if that was from the oxiplatinin or Xeloda.
    No nausea, no hair loss etc..., the important thing is to eat your meal and take your Xeloda within 30 minutes of the meal. That doesn't mean wait 30 minutes before taking your Xeloda, you can take the pill right after you eat if you choose, but you SHOULD take it within 30 minutes to avoid stomach upsets. Remember that part, most important, makes a difference in how you tolerate the Xeloda.
    Of all the chemos I truly believe Xeloda is the mildest of them. It targets your colon cancer in specific, which is why I'm surprised that he recommends Xeloda over Avastin, since you have mets.
    Please correct me if I'm wrong on this.
    By the way I'm stage IV, mets to liver, and someplace in the lymph node system.
    It's good to be in top 10% of patients!!!
    Winter Marie
  • Hello Flyguide
    So, your into fly fishing or bushpilot flying?
    As for the Xeloda (chemo pills)I'm guessing I'm the Xeloda Queen here, I love Xeloda, I took the maximum dose, 1500 mgs in morning 1500 mgs in evening for 14 days, 7 days off.
    I have been on Xeloda alone, and had no side effects, other then tingling in tips of fingers and tips of toes, and I'm not sure if that was from the oxiplatinin or Xeloda.
    No nausea, no hair loss etc..., the important thing is to eat your meal and take your Xeloda within 30 minutes of the meal. That doesn't mean wait 30 minutes before taking your Xeloda, you can take the pill right after you eat if you choose, but you SHOULD take it within 30 minutes to avoid stomach upsets. Remember that part, most important, makes a difference in how you tolerate the Xeloda.
    Of all the chemos I truly believe Xeloda is the mildest of them. It targets your colon cancer in specific, which is why I'm surprised that he recommends Xeloda over Avastin, since you have mets.
    Please correct me if I'm wrong on this.
    By the way I'm stage IV, mets to liver, and someplace in the lymph node system.
    It's good to be in top 10% of patients!!!
    Winter Marie

    This comment has been removed by the Moderator
  • Lori-S
    Lori-S Member Posts: 1,277
    Hey Fly
    I can't tell you about the Xeloda as I'm a FOLFOXer right now. But, welcome to the board!
  • CanadaSue
    CanadaSue Member Posts: 339

    Hello Flyguide
    So, your into fly fishing or bushpilot flying?
    As for the Xeloda (chemo pills)I'm guessing I'm the Xeloda Queen here, I love Xeloda, I took the maximum dose, 1500 mgs in morning 1500 mgs in evening for 14 days, 7 days off.
    I have been on Xeloda alone, and had no side effects, other then tingling in tips of fingers and tips of toes, and I'm not sure if that was from the oxiplatinin or Xeloda.
    No nausea, no hair loss etc..., the important thing is to eat your meal and take your Xeloda within 30 minutes of the meal. That doesn't mean wait 30 minutes before taking your Xeloda, you can take the pill right after you eat if you choose, but you SHOULD take it within 30 minutes to avoid stomach upsets. Remember that part, most important, makes a difference in how you tolerate the Xeloda.
    Of all the chemos I truly believe Xeloda is the mildest of them. It targets your colon cancer in specific, which is why I'm surprised that he recommends Xeloda over Avastin, since you have mets.
    Please correct me if I'm wrong on this.
    By the way I'm stage IV, mets to liver, and someplace in the lymph node system.
    It's good to be in top 10% of patients!!!
    Winter Marie

    Don't mean to rain
    Marie,

    Don't mean to rain on your parade, but if you are a queen of Xeloda, my husband must be the King cause he was taking 5200mg a day 14 on 7 off. With no side effects either.

    So I do not believe 3,000mg is not the max.

    Sue
  • Brenda3.16
    Brenda3.16 Member Posts: 209
    Lori-S said:

    Hey Fly
    I can't tell you about the Xeloda as I'm a FOLFOXer right now. But, welcome to the board!

    Fly,
    I am currently on

    Fly,

    I am currently on Xeloda. I have been on Xeloda for a year. I did Xeloda alone, 7 days on 7 off. Xeloda with Avastin and now Xeliri. I had almost no side effects from the Xeloda. Worked full time, exercised, traveled, etc. My feet are dry and sometimes a little sore. Bag Balm helps that. Welcome.