Fretting caregiver

Sim3107
Sim3107 Member Posts: 2
in Colorectal Cancer #1

My mom was diagnosed with Stage III Colon Cancer this year. She is undergoing chemo - Capox and it is really taking a toll on her. She is one of the most loving, kind and positive people ever - and while she continues to joke and laugh, it kills me to see her emaciated and not eating.

And while in my heart I know she is going to beat this life-wrecking disease, I just wanted to reach out and ask all you good folks for some hope and some assurance that these side effects are actually normal and nothing to cry about every night. 

 

I feel like I'm developing anxiety and depression and constantly feel so helpless and like I'm somehow failing her by not being able to alleviate the pain. The doctors are of course doing their best but God! This treatment is worse than the bloody disease!

Comments

  • NHMike
    NHMike Member Posts: 213 Member
    #2
    This is something that I'll

    This is something that I'll be going through after surgery so I have some fear and trepidation as I've read lots of posts of people having side-effects witht he Oxiliplatin (part of the CapOx or XELOX). What I've read is that the doctors are supposed to lower the dose of the Oxiliplatin if the toxicity level gets too high. Perhaps she could discuss this with her doctors. In some cases, I've heard that the Oxiliplatin was discontinued.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited August 2017 #3
    CAPOX

    I have little perspective on what it is like to be a caregiver since I am a patient, but I do have some thoughts about chemo.  For me, as a stage 3, the chemo only gave me a 10% survival advantage.  It was a 49%/51% choice to try chemo.  I hated the oxilplatin and decided to stop it after only one dose.  Also, I was more sensitive to the capecitabine than most, so I continued only on a reduced dosage.  If your Mom is having a real bad time, you might want to meet with the oncologist promptly and discuss how much the drugs benefit her and if her side effects can be mitigated by reducing the dosage.  If you read some of the medical journal studies on these drugs you will find that almost all patients lower the dosage or quit before the recommended period of time passes.  Your Mom is the one who is control of her medical treatment and she may want to act proactively in making it work better for her.  Good luck, these situations are extremely difficult and never pleasant.  

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #4
    Nausea

    Is it mostly the nausea that's giving her grief? The docotr should be able to give her something to combat that and at least reduce it. I'm on a chemo that is giving me nausea and it's really hard to force myself to eat most of the time but I do have a anti-nausea pill that helps a lot. I know there are several different ones. She should have to put up with that.

    I have to tell you-as a patient- I think it's much harder being the caretaker than the patient. How much longer is she on this chemo? She really does need to eat somethingand I know it can be so hard, everything you think about you think 'bleh'. And if I did force myself to eat something and then felt sick I then have an aversion to it afterwords so that makes it even harder. 

    Know that what you're mom is going through is normal and we get things like that from various chemos. She might have to switch to another one and it'll be great for her. It's all part of getting well, as unpleasant as it is.

    Keep looking for the light at the end of the tunnel. It's there.

    Jan 

  • NHMike
    NHMike Member Posts: 213 Member
    #5
    I was feeling nausea and

    I was feeling nausea and tired today and was lying on the basement floor and my daughter asked if I wanted a pillow. Instead I did something counterintuitive and went out for a ten-minute walk and was feeling much better afterwards. So maybe walking can help. I don't know whether or not it solves the underlying problem but it problems induces some brain chemistry changes that at least gets rid of the feeling for quite some time. It helps me to keep working.

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #6
    Nausea

    If the onc will prescribe it, see if Emend will work for her.  It is sort of expensive but is used to prevent nausea instead of treating it and it worked great for me.  Don't lose hope, your Mom needs you to be strong for her even though it is hard.  As I continue to battle cancer myself and wonder when the side effects will ever end, I know that it is extra hard on my wife having to watch what it does to me.  The fact that she tries to be strong (at least in front of me) is not only a testament to our love for each other, but also shows just how strong she really is.

  • SophDan2
    SophDan2 Member Posts: 150 Member
    #7
    This might help

    If your mother is not eating, I agree with the others, nausea is not helping. This is what I have tried, after I receive my treatment every other week for 48 hours each time (I go home with a pump). I take the steroid hat I am prescribed for the for 3 days, then I go to prescribe anti-nausea med for the 4th and 5th dsy, after which I go to medical marijuana edibles. The edibles have no serious side effects and makes you very hungry, which might help you mother (she could take soone if needed to generate a better appetite).

    She would need to get a medical marijuana card, which cost around $150 to $200. Find a dispensary that carries a large selection and go talk with them about what might be best for your mother (she'll need t be present). It is all based on the THC content in each edible, which are like small square gummy bears. I take 2 squares as needed (2 ML of THC each, which is very low). I have gone through 6 treatments and have only needed the edibles twice, and it allowed me to eat and not feel nauseous at all.

    I hope you feel this info helpful

    Wishing your mother and you the best!

  • darcher
    darcher Member Posts: 304 Member
    #8
    I'm also a stage 3 and yup,

    I'm also a stage 3 and yup, between radiation and chemo (Xeloda) twice a day, it takes a toll on your body.  This is my third week and diahrrea is kicking in.  The first month or so after being diagnosed I lost over 10 lbs mostly because I didn't feel hungry. They can prescribe pills for the nausia which does work.  I had one episode last Saturday where I was on the can and was expelling from both ends (top and bottom) at the same time.  That wasn't fun. It probably looked a lot worse than it felt.  At this stage I'm eating a lot more although I need to keep tabs on the grumblings from below as to whether I should take one of the nausia pills or not.  I'm + 1 pound which is a nice change from going in the other direction. 

     But, know this. Your mom is fully aware you are doing the best you can and that's as much as you can do. Eventually the affects will go away and she'll gain some appetite and things will come back to normal. According to my doctors this is all normal and should be expected.  Although it's not in the usual course of things we are accustomed to it's a life changing event and as with everythng else we adapt.  

  • Sim3107
    Sim3107 Member Posts: 2
    #9
    Thank you all for reaching

    Thank you all for reaching out! Was really comforting to know that what we are experiencing is not completely unexpected.

    Just to give you some background, my mum has undergone chemo last year since some nut of a doctor misdiagnosed her with ovarian cancer. Anywho, that's behind us now, it's just that her body is taking it worse this time since she's had chemo before too - that's what our current and much more competent doctor has explained.

     

    Also, she has been admitted to the hospital as of yesterday to contain her side effects which were - diarrhoea, dehydration, weakness and high pulse. She is on the road to recovery now!

     

    We will be switching treatment to either FolFox or reduce the dosage of Capox - something we will be deciding once she has regained her lost strength. 

     

    Her loss of appetite is not owing to nausea unfortunately, which has been controlled very well with medication. She just cannot get herself to eat anything. Sadly, no doctor we have consulted seems at all keen to prescribe hunger medication.

     

    Also, thank you for you suggestion SophDan2, I do know that medical marijuana would do wonders for kickstarting her appetite. Unfortunately, it is illegal in India, which is where we are from!

  • Mahharet
    Mahharet Member Posts: 8
    #10
    Im a caregiver as well

    I am helping provide care for my mother who has colon cancer that has spread to the liver.  At 81 the treatment would have been worse than the disease so we are with help from hospice providing pallative care.  

    I understand your feeling stressed and depressed.  It is incredibly difficult to watch your parent going thru this terrible thing.  I was begining to feel the same way and I began to blog about what is going on and how I feel about things.  I feel that just being able to get things out is begining to help.  My brother has been gracious and we are doing the home hospice in his home. Having extra help and support helps.  Take care of yourself.  I don't know if sharing my blog here is okay but its on wordpress its called Lost in translation.  I have finally begun to take the time to post my notes onto the blog after just writing things on sheets of paper.  

    I wish you well and your family as well.  Take care of yourself.

    Marta.

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