Stage llb diagnosis - Not sure about Xaloda

2

Comments

  • darcher
    darcher Member Posts: 304 Member
    Ask one question.

      Next time you see the oncologist ask them what would they do if it were them.  I bet they'll say take the Xeloda or what ever it is they're recommending.  Don't let a low CEA score or not feeling bad fool you.  My CEA was only a 1.3 and that was after being first diagnosed.  The only reason I ended up being diagnosed was because I was passing blood and got a colonoscopy.   If it weren't for that I'd be screwed by the time it did make its move.  

  • Worriedchild
    Worriedchild Member Posts: 56
    kmcgowan said:

    Genetic testing

    Yes, I had genetic testing and I had no mutations

    Can you please tell me what genetic test was carried out

    Please can you explain me what was the genetic test you went through and what were the results??

  • Worriedchild
    Worriedchild Member Posts: 56
    darcher said:

    Ask one question.

      Next time you see the oncologist ask them what would they do if it were them.  I bet they'll say take the Xeloda or what ever it is they're recommending.  Don't let a low CEA score or not feeling bad fool you.  My CEA was only a 1.3 and that was after being first diagnosed.  The only reason I ended up being diagnosed was because I was passing blood and got a colonoscopy.   If it weren't for that I'd be screwed by the time it did make its move.  

    Cea level

    please tell me if your cea was 1.3 

    where was the tumor and what was extent ? Ct abdomen and PET report? Localized disease??

  • Worriedchild
    Worriedchild Member Posts: 56
    Stage 2 CA colon

    greetings everyone

    iam worried child of a father diagnosed with Stage 2 Adenocarcinoma of transverse colon he had obstructive symptoms

    he was operated in emergency all his Lymphnodes are Negative liver clear cea 3.95 but my concern is does he need PEt scan because we couldnt get it done before surgery any body with same situation please help

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member

    Stage 2 CA colon

    greetings everyone

    iam worried child of a father diagnosed with Stage 2 Adenocarcinoma of transverse colon he had obstructive symptoms

    he was operated in emergency all his Lymphnodes are Negative liver clear cea 3.95 but my concern is does he need PEt scan because we couldnt get it done before surgery any body with same situation please help

    Sorry to hear of Father

    First off I'm sorry to hear of your father.  Stage 2 can be very treatable especially if they find no spreading.  He should definitely have a CT scan done as this will tell if it has spread.  PET scans are hard to approve through the insurance companies as they are very expensive and the insurance companies don't want to pay for it.  CT scans are more easily obtained and can show a great deal in spreading.  Make sure someone goes with him to the Oncologists' appointment and ask for a CT scan.  Also, you should start a new post about your dad.  That way people can respond only to your questions.  Wishing your father much luck. 

    Kim

  • abita
    abita Member Posts: 1,152 Member
    I am on folfox as one of my

    I am on folfox as one of my infusion drugs. I don't really have a choice but to complete mine after the 4th infusion. I say after the 4th because hopefully the first 4 shrink my liver Mets enough to remove. Since mine spread, I feel I have to complete all 12 to give me the best chance for no recurrence. 

  • abita
    abita Member Posts: 1,152 Member
    edited December 2017 #28
    Hoot said:

    New here.  But I was

    New here.  But I was diagnosised with rectal cancer on April 4th.  Had chemo (Xeloda) and radiation first.  Had to stop Xeloda early because it was making me sick and I couldn't finish my radiation.  However I did finish and had surgery on 9/11.  Now I am going through chemo again bc 2 of my lymph nodes were affected.  One the cells were dead and the other there was a very small amount.  So he started me on xeloda and oxiplat.  Now he has taken me off the Xeloda and wants to put me on the chemo pump bc my body is not tolerating the Xeloda.  My WBC is very low.  Has anybody had the pump and how does it work and what are the side effects.  Scared!

    I am on the pump. My tumor

    I am on the pump. My tumor was in my sigmoid colon. Which was removed with the tumor, and now I am on oxiplatin, leucoverin, and 5fu to shrink the lesions only liver so my surgeon can remove them, and to kill any tiny hidden cancer cells that might come back as cancer. I  don't love the pump, but it is tolerable.  In fact,  the hardest part for me is how as sad my youngest cat is when I come home with it every other Monday. Mishaps have been walking past a door and the tubes getti ng caught, forgetting it until it hits the floor,  and not realizing my middle cat had opened the Velcro window trying to find where the sound was coming from. It makes the same sound as the iv in hospital does. That did make it hard for me to fall asleep, so I leave the tv on. The nurse gives you a little demo of what to do if it beeps, like if the tube is twisted or what have you. I go back to the hospital  on Wed 30 minutes before it finishes, and the nurse takes it out. Somehow, my subconscious makes my body be more still when I sleep with it. That was a huge fear for me. The strap is adjustable. I mostly carry on my shoulder, but if doing something like cooking, I wear it crossbody. That is a little uncomfortable for me with my chemo port but fine enough. I think the the oxiplatin is the cold side effect, so I guess the 5fu is the numbness. I really am not sure. But my lips get a little numb, and the area on my surgery scar is numb. I have only had 3 so far. I can say, I really don't like it, but for me it is what it is. On the first night, I remind myself it is only two nights. On the second night, I think, tomorrow I get to return it. The side effect that affects me the most is the tiredness and fatigue but I have no idea if that is the oxiplatin or the 5fu. The tubes are sturdier than those that are used on the iv the hospital has. But yes, the fear of it spilling somehow is always in the back of my mind. Especially with 3 cats who would be curious and hard to move away from the poison. They give a little wipe up cloth, just in case. You can stop the pump if somethi my happens, and there are the clamps. Any other questions I can tell with? Honestly, it sucks, and my attitude is really just that in the grand scheme, 6 months is a blip and this is something I have to do to be cured so it is what it is. But my case is different from yours in that mine spread to my liver, and I don't have a choice. 

  • abita
    abita Member Posts: 1,152 Member

    Xeloda

    That is what my recommendation was along with radiation for rectal cancer when first diagnosed.  Never had any problem with it and it didn't bother my hands or feet very much as they said to apply a lot of lotion to both.  Stage 2 can be very debatable as far as treatment because if it comes back it can come back with a vengence and then it will be a lot harder to cure once it has returned.  You do whatever you and your oncologist thinks best but make sure you do it with no regrets.  It's hard to look into the future and even harder to look back and say "if only".  Best to you.

    Kim

    Why lotion to hands and feet?

    Why lotion to hands and feet?

  • Worriedchild
    Worriedchild Member Posts: 56

    Sorry to hear of Father

    First off I'm sorry to hear of your father.  Stage 2 can be very treatable especially if they find no spreading.  He should definitely have a CT scan done as this will tell if it has spread.  PET scans are hard to approve through the insurance companies as they are very expensive and the insurance companies don't want to pay for it.  CT scans are more easily obtained and can show a great deal in spreading.  Make sure someone goes with him to the Oncologists' appointment and ask for a CT scan.  Also, you should start a new post about your dad.  That way people can respond only to your questions.  Wishing your father much luck. 

    Kim

    My Father Stage 2 Colon CA

    We had his ct abdomen pelvis it was clean anybody with same situation can you guide me did you opt for chemo or not  doc is leaving this decision upto us

  • Worriedchild
    Worriedchild Member Posts: 56
    darcher said:

    Ask one question.

      Next time you see the oncologist ask them what would they do if it were them.  I bet they'll say take the Xeloda or what ever it is they're recommending.  Don't let a low CEA score or not feeling bad fool you.  My CEA was only a 1.3 and that was after being first diagnosed.  The only reason I ended up being diagnosed was because I was passing blood and got a colonoscopy.   If it weren't for that I'd be screwed by the time it did make its move.  

    Please tell me what was your

    Please tell me what was your Ct scan or PET scan report if your CEA was normal and what was stage

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Mop Up Chemo

    A lot of people call this "mop up chemo" after a lower stage, especially if there was surgery involved.  If they remove the tumor and get clean margins there is no guarantee that during surgery there wasn't some microscopic cells that got loose so they want to do a "mop up" to rid those cells before they can spread elsewhere with chemo.  Just remember if you are given the option and it comes back, you can't second guess and say "what if".  You have to make sure the decision you can live with.  It's hard, but there can't be any regrets either way.

    Kim

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    abita said:

    Why lotion to hands and feet?

    Why lotion to hands and feet?

    Lotion

    For some reason that medication targets hard the hands/feet and makes them burn or loose skin and turn red.  You should put lotion on these areas just to prevent cracking and sores.

    Kim

  • Worriedchild
    Worriedchild Member Posts: 56

    Mop Up Chemo

    A lot of people call this "mop up chemo" after a lower stage, especially if there was surgery involved.  If they remove the tumor and get clean margins there is no guarantee that during surgery there wasn't some microscopic cells that got loose so they want to do a "mop up" to rid those cells before they can spread elsewhere with chemo.  Just remember if you are given the option and it comes back, you can't second guess and say "what if".  You have to make sure the decision you can live with.  It's hard, but there can't be any regrets either way.

    Kim

    Thankyou anabelle

    thankyou my dear i would need some more info would like to share your stage, chemo drugs and CEA level what was CT scan report i shall be grateful

  • keefer
    keefer Member Posts: 4
    edited January 2018 #35
    Coffee and Tea Restrictions on Xeloda

    My 2a brother is taking xeloda and doing radiaxn for colorectal ca.... Said his dr told him NO coffee or tea WITH MEALS (interefers with iron absorption????) although he's allowed to drink both (as desired) between meals. Is this "solid," or is this yet another reason to not completely trust this onco?

    Thanks!

    kEEfEr

  • Mikenh
    Mikenh Member Posts: 777
    keefer said:

    Coffee and Tea Restrictions on Xeloda

    My 2a brother is taking xeloda and doing radiaxn for colorectal ca.... Said his dr told him NO coffee or tea WITH MEALS (interefers with iron absorption????) although he's allowed to drink both (as desired) between meals. Is this "solid," or is this yet another reason to not completely trust this onco?

    Thanks!

    kEEfEr

    I don't recall this

    I don't recall this restriction but my chemoteach was back in July. I'm taking Xeloda right now and sometimes I take it with a cup of tea if it's a drink that I have handy. I sometimes drink coffee or tea with meal - again if there happens to be a drink handy. So I'm curious about this recommendation as well.

  • Worriedchild
    Worriedchild Member Posts: 56
    kmcgowan said:

    Thanks Tru!!!   Yes, I did

    Thanks Tru!!!   Yes, I did have surgery and they were able to completely remove the cancer.  I had 15 lymph nodes taken and all were negative. I had a CT scan of my lower abdomen, that is when they found the tumor, but there was no evidence of it anywhere else.  Later, I had a CT scan of my upper body and it was clean. My CEA level is normal and I do not have any genetic mutations that put me at more risk of recurrence. 

    This is such a hard decision to make.  All my family and friends are supportive either way.

     

    Please guide

    with the above history can you tell me what was your CEA before surgery and did uou go for chemo?

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    Just to offer another opinion

    Just to offer another opinion. I was 11b 8 years ago and chose no chemo. I had some risk factors...7.5 CEA at diagnosis, obstructed. Although my CEA hovers between 3-5, I have not had a recurrence though have continued to be followed closely. In fact, will have a CT tomorrow. I have had a lacunar stroke in that time but no cancer. Again, there is no right or wrong but you need to be able to live with the decision and have an oncologist comfortable with that route. If my onc had disagreed, I would have listened. My situation was presented to the tumor board at the major teaching hospital where I was treated and there were differing opinions. A difficult decison for sure. Best wishes for peace in whatever you decide.

    CM

  • Worriedchild
    Worriedchild Member Posts: 56

    Just to offer another opinion

    Just to offer another opinion. I was 11b 8 years ago and chose no chemo. I had some risk factors...7.5 CEA at diagnosis, obstructed. Although my CEA hovers between 3-5, I have not had a recurrence though have continued to be followed closely. In fact, will have a CT tomorrow. I have had a lacunar stroke in that time but no cancer. Again, there is no right or wrong but you need to be able to live with the decision and have an oncologist comfortable with that route. If my onc had disagreed, I would have listened. My situation was presented to the tumor board at the major teaching hospital where I was treated and there were differing opinions. A difficult decison for sure. Best wishes for peace in whatever you decide.

    CM

    Gratitude

    thankyou dear please tell me if it was stage 2 did they ask you to go for PEt after surgery

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited January 2018 #40

    My Father Stage 2 Colon CA

    We had his ct abdomen pelvis it was clean anybody with same situation can you guide me did you opt for chemo or not  doc is leaving this decision upto us

    Treatment

    When you are presented with an option to "take or not" you have to be very careful in the decision and if you choose not to and the disease come's back you have to be comfortable with the decision you made not to take it. If however you choose to take the treatment you also have to be aware of the side effects but also know that this is a "mop up" chemo which can catch any lingering cells that could possibly spread to other areas of the body.   Just remember, it's a decision you can live with or possibly regret.  It's hard that's for sure.  Good luck and best of luck to your dad.

    Kim

  • kmcgowan
    kmcgowan Member Posts: 7

    Can you please tell me what genetic test was carried out

    Please can you explain me what was the genetic test you went through and what were the results??

    Testing

    Hi Worriedchild, I had an extensive genetic pannel done to see if I had any genetic mutations that would put  me more at risk for recurrance, as well as many other types of cancers: breast, liver, lung, etc...

    I the tests came up negative.  My CEA was 4 prior to surgery. I am not sure what the exact number is now, but my Oncologist said it was normal. I also had an upper CT scan that came up normal. 

    I have decided to go more of a naturopathic way of fighting off any cancer cells.  My Oncologist will be seeing me every 3 months so I go next in March.