stopping chemo early...

pink05
pink05 Member Posts: 550
edited March 2014 in Colorectal Cancer #1
Hi everyone. I was wondering if I could get your input on something: My dad just began Xeloda this past week in place of the 48 hour 5-fu pump. He was horrified after seeing how many pills he has to take everyday (He has to take 12 pills--6 in the a.m., and 6 p.m.) He has had to do this everyday for a week. Today is his last dosage and he will have a week off. Well, today, he told me that he wants to stop the chemo completely because he is really beginning to feel the effects from it (especially fatigue and mouth sores). He is upset because two of his teeth are falling out from the chemo and he will need to have them pulled.

My question is, should I convince my dad's doc to take him off of the chemo early? My dad would have about another month left if he kept going, then he would get a break. Just to re-cap, my dad is stage IV with 2 liver mets which have shrunk to the point of being invisible on the last CAT scan. I feel so horrible for my dad and I don't know what to do. On the one hand, I think he's made it this far, maybe he should just stick it out for another month. But on the other hand, the chemo is really taking its' toll and I don't want him to suffer. I don't know what to do. I guess I should just respect my dad's decision. Any advice would be so appreciated. Thanks.

God bless you all.

-Lee-

Comments

  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    Hi Lee -

    This is tough. When you say your Dad would have "another month left to go", what exactly does that mean - i.e. how many cycles - just one (or two)? How many treatments has he had? Has he had a PET scan that confirms the negative CT? If not, I would suggest that he does.

    Stopping chemo - especially for Stage IV is a difficult decision - but if he is PET and CT negative, depending upon the number of treatments, you might really want to consider it. On the other hand, if he is close to a "break" and only recently NED, it might be good for him to push himself one or two more times.

    Drop me an email on this site with your email address. I would be happy to share my Stage IV experience with you and your Dad.

    Take care,
    Betsy
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    Hi Lee,

    It is very difficult decision. The most important issue to remember is that if your father is not legally conserved or handed his medical power of attorney to someone, he has a right to make his own medical decisions. You can try to convince him what you think is the best but in the long run he is the one who needs to decide. If he is lucid and has all the information and possible consequences of his decision, then maybe you should let him make his own decision. This way you would not have to blame yourself for any decision you have made. It might be difficult for you to accept what he wants but it is the best way to go that is if, I repeat if, he is clear and lucid in his mind.

    I wish I did not have to make these type of decisions for my mother but I must because she has Alzheimer's type dimentia and I am her conservator. How I wish, I would not have to do it......

    Also, another thought is: what I usually try to do when I make decisions for my mother is try to imagine what she would want and also very important what I would do for myself in the similar situation.

    I hope it helps for the decision making.

    Best wishes and God Bless, Eleonora
  • mindy10
    mindy10 Member Posts: 182
    Hi Lee, thats the pill my dad was on and he really hated it. He felt worse on that then when he was on IV Chemo. The Xeloda didnt work for him but he was different than your dad. He still had some pretty big tumors when he started it. The bottom line is as soon as the chemo is stoped it gives the cancer time to grow. All you can do is tell your dad that if he stops the chemo the tumors can grow at that point. Only he can make the decision if he wants to continue the chemo. All you can do is give him the information. Mindy
  • scouty
    scouty Member Posts: 1,965
    Tough question Lee,

    I noticed that only the angels (caregivers) have replied to your post and had to give you my 2 cents. I did way too many toxic chemo drugs for too long and decided to stop them but I didn't just stop chemo. I completely changed my lifestyle, including my diet to hopefully offset the chemo stoppage. So far it has worked for me.

    Cancer cells thrive in acidic environments and most of our US diets are way too acidic. If he does stop chemo, he needs to reverse the chemical balance within his body.......he needs to alkaline his diet!!!!!!!! Do a search on it. Trust me when I say stopping chemo is not a death sentence, it actually could make a life more fulfilling. Read my web page if you need more but in the mean time, trust your gut and above all, take care of your Dad like you have been doing.

    Lisa P.
  • jana11
    jana11 Member Posts: 705
    Hi. In addition to eating well.... which makes you feel much better and better able to tolerate chemo... have your dad talk to his onc. Mine told me the dose of xeloda isn't as important as taking it. Perhaps he can go on a longer break, or take less pills... get more infomation from your doctors. :)

    My nutritionist told me vitamin C does wonders for helping combat side effects; but that would mean taking more pills.

    Good luck to you and your dad. So far so good.... hope those mets never return. jana
  • CAMaura
    CAMaura Member Posts: 719
    Hi there - Have you or your dad contacted a dentist about his mouth/teeth problems? Just wondering 'cuz having teeth pulled sound so serious. All the best to you. These decisions are hard, but the chemo has worked and in the future, the nutritional side could really keep him healthy...All the best - Maura
  • KathiM
    KathiM Member Posts: 8,028
    Aw, Lee....tough choice for both of you...

    I did the whole enchilada on the rectal cancer chemo, but it was all IV stuff. But, when the breast cancer chemo came around, I skipped one of the first set...went into the second set early...I was just tooo sick...
    But, something is obviously working with dad....shrinking tumors and noexistant cancers is what it's all about...I will give you what one onc said to me when I thought about stopping my bc stuff all together:
    'Why would you risk the fight you have already fought when you are so close to finishing?'
    BUT....for the side effects, I drank (still do) 2 quarts of WATER a day....made and makes a BIG difference in how I feel...
    Hugs to you and dad....
    Kathi
  • spongebob
    spongebob Member Posts: 2,565
    Ahoy, Lee -

    Not much I can say that hasn't already been said here. I would just offer-up a question I posed to a dear friend (who, BTW, is one of the folks that answerd your post) when she was contemplating stopping chemo: "Is your life about quantity or quality?" She made the choice that was right for her. Please let your dad make the choice that is right for him - whatever that choice may be. Love him and support him 100% and know that he is doing what he feels is the best thing for him.

    Caregivers like you are a rare and precious commodity. Thank you for all you do.

    Peace

    - SpongeBob
  • lovonna
    lovonna Member Posts: 78
    Lee I do not have colon or liver cancer, I just browse this board because it is so active. I stopped my chemo treatments for breast cancer early. I was supposed to have six and made it thru three.

    I agonized over the decision, but in the end really didn't make the decision, my oncologist made it for me. I was very weak, my blood pressure bottomed out and had a fever five weeks after my third treatment. My oncologist told me your body is not tolerating chemo and we are going to stop your treatments.

    I have had a reoccurance since then. Same cancer, they call it a reoccurance but technically my cancer never left. When they did my mastectomy they left a small amount of breast tissue behind and a cancer cell lingered there. I asked my doc what the chances of this happening were and he said one percent! I also asked if I would have been able to finish my chemo would that have taken care of it and he said probably not. The chemo did everything to my body but what it was supposed to do.

    If your dad is telling you he wants to stop, respect his decision. He knows his own body and he knows how much he can handle. If teeth are falling out, his oncologist may stop him.

    I know what the two of you are going thru and will say a prayer.

    May God Bless You Both,

    LoVonna
  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    jana11 said:

    Hi. In addition to eating well.... which makes you feel much better and better able to tolerate chemo... have your dad talk to his onc. Mine told me the dose of xeloda isn't as important as taking it. Perhaps he can go on a longer break, or take less pills... get more infomation from your doctors. :)

    My nutritionist told me vitamin C does wonders for helping combat side effects; but that would mean taking more pills.

    Good luck to you and your dad. So far so good.... hope those mets never return. jana

    Jana (and Lee) -

    My oncologist told me the same thing. When we reduced my Xeloda dosage after 3 cycles, she told me it was much more important that I was taking it, than it was how much I was taking. And, boy, did I feel better after the dose was reduced - way more than I expected. So, alternative dosages are really something to be considered.

    Take care,
    Betsy
  • nanuk
    nanuk Member Posts: 1,358
    bottom line, it is always the patient's decision and the patient's consequences. I personally don't see much in the way of positive results from chemo, but there are so many roads to follow, and sometimes the one less traveled can be right...? Bud
  • vinny3
    vinny3 Member Posts: 928
    I may have missed something. Why did they switch to Xeloda if it seemed to be working w the pump and was/is he on other meds? The mouth sores are very bothersome and he needs to talk to the onc. On my first go-around when I was on the continuous 5-FU pump for 6 wks I developed mouth sores and was going to "tough it out". My oncologist told me if I did that I would be in the hospital soon and she stopped it for several days and then lowered the dose. In the final analysis it is his decision but he should check with the onc to see re a break/stopping/lower dose/different med.
    Good luck. He is very fortunate to have you helping him.
    ****
  • pink05
    pink05 Member Posts: 550
    vinny3 said:

    I may have missed something. Why did they switch to Xeloda if it seemed to be working w the pump and was/is he on other meds? The mouth sores are very bothersome and he needs to talk to the onc. On my first go-around when I was on the continuous 5-FU pump for 6 wks I developed mouth sores and was going to "tough it out". My oncologist told me if I did that I would be in the hospital soon and she stopped it for several days and then lowered the dose. In the final analysis it is his decision but he should check with the onc to see re a break/stopping/lower dose/different med.
    Good luck. He is very fortunate to have you helping him.
    ****

    ****,

    They switched to Xeloda because my dad didn't want to go in for 4-5 hour infusions anymore and he hated wearing his portable pump for 2 days. I'm beginning to wonder if he should have just stuck with the pump until he gets a break, but the onc appeared to be comfortable switching my dad to the Xeloda. My dad's next onc. appt. is on Monday, so I will talk with him more about all of my concerns.

    Thank you,

    -Lee-
  • pink05
    pink05 Member Posts: 550
    Thank you to all of you for your responses. As always, you have all given me some very good advice.

    God bless all of you,

    -Lee-