update

krystiesq
krystiesq Member Posts: 240 Member
edited March 2014 in Colorectal Cancer #1
Sitting in chemo with mom right now. We have just been told that she has the kras mutation so erbitux is out. She also has an enzyme deficiency that makes her body tolerate folfiri more harshly than the normal person which makes giving her a normal dosage out of the question. She rec'd half the dosage last time and still ended up in the hospital due to dehydration/low potassium. So her Onc said we have tough decisions to make. She can continue with folfiri go every three weeks instead of two, go back to folfox, try xeloda with (can't remember drug), or try a clinical trial. My mom interpreted this as there not being much left they can do for her and I am trying to cheer her up right now. Any suggestions?

She opted for folfiri every three weeks.

We are still waiting on the biopsy results for thyroid.

It is very hard to wait and wait and wait.

I hope you all are well this holiday.

Comments

  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #2
    Tough decisions....
    The good thing is that there seem to be options. I think that her decision to do Folfiri every three weeks at this point is probably a very good decision. But in order to make further decisions, you need the following questions answered:

    1. Has she already had folfox? Did she respond well to it?
    2. The same question goes for Xeloda/???. It would be good to know the name of the other drug.

    I was never given this many options, so please let your mom know that I wish her a very Happy New Year and that things are not as bad as they may seem to her, especially having such wonderful such as yours. God bless. Monica
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #3
    Prayers
    I'm sorry, dear. I know this is so hard on both of you. I'll be praying for you and our mom.

    *Hugs*
    Gail
  • dixchi
    dixchi Member Posts: 431
    #4
    tootsie1 said:

    Prayers
    I'm sorry, dear. I know this is so hard on both of you. I'll be praying for you and our mom.

    *Hugs*
    Gail

    Second Opinion
    I know this is so difficult for you; I wish I was as blessed as your mother is having you
    to take care of her and "run interference" for her. Have you thought about getting a second
    opinion from another oncologist? Also I wonder abut how much information you were given from
    the docs about managing side effects........such as different things to drink if your mother
    was having a hard time taking in fluids and what to do about maintaining proper level of
    potassium in the body by eating certain foods like bananas? I would have to say that my
    oncologist office was excellent in providing a lot of materials about managing side effects.
    They can also add certain things to the chemo such as magnesium and calcium which helps.
    Just tossing that out there for thought. You are in my thoughts and be sure and take care
    of yourself as well; you are very important to your mother.
  • krystiesq
    krystiesq Member Posts: 240 Member
    #5
    dixchi said:

    Second Opinion
    I know this is so difficult for you; I wish I was as blessed as your mother is having you
    to take care of her and "run interference" for her. Have you thought about getting a second
    opinion from another oncologist? Also I wonder abut how much information you were given from
    the docs about managing side effects........such as different things to drink if your mother
    was having a hard time taking in fluids and what to do about maintaining proper level of
    potassium in the body by eating certain foods like bananas? I would have to say that my
    oncologist office was excellent in providing a lot of materials about managing side effects.
    They can also add certain things to the chemo such as magnesium and calcium which helps.
    Just tossing that out there for thought. You are in my thoughts and be sure and take care
    of yourself as well; you are very important to your mother.

    this is our second opinion
    We are currently at James Cancer Center in Columbus.
  • krystiesq
    krystiesq Member Posts: 240 Member
    #6
    Monicaemilia said:

    Tough decisions....
    The good thing is that there seem to be options. I think that her decision to do Folfiri every three weeks at this point is probably a very good decision. But in order to make further decisions, you need the following questions answered:

    1. Has she already had folfox? Did she respond well to it?
    2. The same question goes for Xeloda/???. It would be good to know the name of the other drug.

    I was never given this many options, so please let your mom know that I wish her a very Happy New Year and that things are not as bad as they may seem to her, especially having such wonderful such as yours. God bless. Monica

    folfox
    She has had folfox and responded VERY well. Her CEA got as low as 8.9. After stopping Folfox and being on 5-fu avastin, CEA started to rise.

    She recently had a biopsy on her thyroid which may be a met from colon cancer. If it is and they can do a thyroidectomy, well maybe that will take care of the CEA rising. SHe has no mets to her liver or lungs and virtually all of the rest of her CT results are unremarkable.

    I just don't like my mom thinking that they can't do much for her now. I just want to protect her you know.
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #7
    krystiesq said:

    folfox
    She has had folfox and responded VERY well. Her CEA got as low as 8.9. After stopping Folfox and being on 5-fu avastin, CEA started to rise.

    She recently had a biopsy on her thyroid which may be a met from colon cancer. If it is and they can do a thyroidectomy, well maybe that will take care of the CEA rising. SHe has no mets to her liver or lungs and virtually all of the rest of her CT results are unremarkable.

    I just don't like my mom thinking that they can't do much for her now. I just want to protect her you know.

    Folfox
    Did your mom become resistant to Folfox, or was she taken off it due to side effects? I had to be off Folfox because of side effects, so I am now back on it (2 years after). We will see how it works. I am sorry to hear about the new primary cancer, but please don't despair. You have KathiM as a perfect example of someone who battled two cancers and won. I also agree that the dehydration/low potassium can possibly be helped with nutritional supplements and ensuring that your mom drinks a lot of fluids after chemo. I know it is not easy when you are not feeling your best, but it has to be done. I have a lot of teas, soup broths, fruit juices, etc. Anything with flavour. I hope this helps. Monica
  • MoonDragon
    MoonDragon Member Posts: 183
    #8
    Keep hanging in there!
    I have the same enzyme problem and was unable to tolerate Xeloda. Tell your mom to keep hanging in there and not give up. New things come up all the time.

    Hugs!
  • krystiesq
    krystiesq Member Posts: 240 Member
    #9
    MoonDragon said:

    Keep hanging in there!
    I have the same enzyme problem and was unable to tolerate Xeloda. Tell your mom to keep hanging in there and not give up. New things come up all the time.

    Hugs!

    folfiri
    Are you saying you have the enzyme deficiency that keeps folfiri in your system longer and makes it so you can't take normal dosage? Did you still take it at lower dosage? If so how did it work with respect to CEA level ect.? Just curious.

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