My mom recently diagnosed

Kadykel
Kadykel Member Posts: 11
edited March 2014 in Colorectal Cancer #1
My family and I planned a huge Thanksgiving celebration, with all sides of the family this year. We were so excited, rented a small place and planned a huge family event. My mom cooked her food items, then had a terrible stomach ache. My dad took her to the ER. They were gone awhile so my sisters and I left and went to the ER. Several hours later, the doctor came in and told us she had a gallstone, but also had cancer. The next week was a nightmare. She has never been sick, never had surgery, is a 74 years young, active wife, mother and grandma. Since then, we were told she has Stage IV colon cancer which totally encompasses her entire colon, surgery is not an option. It has also spread to the liver, several tumors throughout and a tumor on her kidney. I told us it was in her lymphnodes as well. However, we haven't asked alot of questions and haven't been given alot of details. Any more than that. I'm not sure what else we need to know...because right now, I'm not sure we are hearing it all. We are still in shock. This past week she had her first chemo treatment. It was three types of meds, then a fourth in the pump for 48 hours at home. She is really struggling feeling bad...a little sick, but just kind of bad all over. She will continue this treatment for six months, once every two weeks with blood tests each week. Any encouragement or help would be appreciated in helping her deal with all of this. Thank you.

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    I'm so sorry you've had to find us here
    But I know you will find some wonderful answers here. There are many helpful souls on this board and I am sure you will find some help. I'm sorry to hear of your mother's advanced disease, sounds like she's got a lot going on. Her being healthy is on her side in this fight. Make sure you have somebody go with her when she visits the oncologist, and write down in a journal side effects she may have as well as any questions you want answered. I am sure if you ask the questions, they will be answered. You are just overwhelmed at this point and it's hard to know what to ask. If you feel there is information being withheld, try and pinpoint WHAT kind of information you think is being withheld and ask directly about it. For example, do you think there's more disease than you've been told? Do you think there are complications you should be looking out for that you don't know about? It sounds like her chemo treatment is pretty standard, either FOLFOX, which is oxaliplatin, 5FU and Leucovorin, with the pump containing 5FU for 46 hours, or FOLFIRI which is the same last 2 drugs and pump, but with CPT-11 instead of the Oxaliplatin. The oxaliplatin and CPT-11 have very different side effects, so if you know which one she's getting, there are people that can help you anticipate and prepare for some of the more common side effects. Her oncologist probably sent her home with papers on the different drugs and some of the possible side effects, but there is more extensive information out there, particularly from those of us who have already had them! This is shocking news whenever you hear it, but it can be fought! Come back often and let us know how you guys are doing, ok?
    mary
  • Kadykel
    Kadykel Member Posts: 11
    msccolon said:

    I'm so sorry you've had to find us here
    But I know you will find some wonderful answers here. There are many helpful souls on this board and I am sure you will find some help. I'm sorry to hear of your mother's advanced disease, sounds like she's got a lot going on. Her being healthy is on her side in this fight. Make sure you have somebody go with her when she visits the oncologist, and write down in a journal side effects she may have as well as any questions you want answered. I am sure if you ask the questions, they will be answered. You are just overwhelmed at this point and it's hard to know what to ask. If you feel there is information being withheld, try and pinpoint WHAT kind of information you think is being withheld and ask directly about it. For example, do you think there's more disease than you've been told? Do you think there are complications you should be looking out for that you don't know about? It sounds like her chemo treatment is pretty standard, either FOLFOX, which is oxaliplatin, 5FU and Leucovorin, with the pump containing 5FU for 46 hours, or FOLFIRI which is the same last 2 drugs and pump, but with CPT-11 instead of the Oxaliplatin. The oxaliplatin and CPT-11 have very different side effects, so if you know which one she's getting, there are people that can help you anticipate and prepare for some of the more common side effects. Her oncologist probably sent her home with papers on the different drugs and some of the possible side effects, but there is more extensive information out there, particularly from those of us who have already had them! This is shocking news whenever you hear it, but it can be fought! Come back often and let us know how you guys are doing, ok?
    mary

    Thank you..
    I have been to every appointment and do take a notebook. I have the meds written down and will get them and post here. You are right...it is shocking. Still in shock. I so appreciate you answering. I believe she is being given the ones you names and the oxaliplatin. When she had her tests we did ask exactly where it was. It is where I shared. We specifically asked about other organs and they are clear. The tumor on the kidney was not biopsied. He is not certain that it is Colon Cancer, but at this point said he would not worry about it, would just watch it to see how it responds to the treatments given. My mom is having problems with the cold. She has a very thorough Nurse Practioner give her all of the possible side effects and I wrote it down. She is really just having the fatigue, general feeling of "crap" and not much tolerance of the cold. She is also having trouble eating, as nothing seems to sound good, but she is eating.

    I will be at every treatment as I work for some very understanding people. I have built up quite a few sick days and will take them. I have many questions, but just don't ask in front of my parents as they just want to know what they need to do and then will do it. I guess as time goes on, I will feel a little more "OK" with asking questions. I am making her tell every things she is feeling. She had severe pain in her right side between Christmas and New Year and when she had her port and first chemo on the 3rd, we told the doctor. He did a CT scan as he said blood clots were possible. However her scan was clear. Since then the pain is gone.

    I am very blessed to live near them and be able to help. Just want to do all I can. She is very big on vitamins, alternative meds as well as medical treatments. If anyone has any suggestions, please share them.

    Thank you so, so much for your support!
  • luvmum
    luvmum Member Posts: 457 Member
    My mum was diagnosed
    I totally understand how you feel right now. My mum was diagnosed 2.5 months ago (stage IV with liver met, not operable plus Kras mutated). Since then I live in pain, worry and feel miserable all the time. I'm not a tough type of person. I wasn't able to sleep nor to eat. I lost as many pounds as my mum lost.
    But I can reassure you, you will feel better after a while (for me, I only start feeling a bit better in the last few days).
    I live with hope and always hope she will recover one day. I also give her hope that she will recover.
    I prepare a comfortable environment for her to live, prepare organic food, design well-balanced diet meals. I give her hand, foot massage every now and then, just to keep her skin moist. Have warm water everywhere because she is very sensitive to cold stuff (side-effect from oxaliplain).
    I watched a Japanese documentary yesterday and there is a lady who was diagnosed with two different types of cancer 33 years ago at aged 71 and she lives till now (104 years old). This is very encouraging!
    Hang in there. I only cry when I go out to do grocery shopping for my mum.
    Best wishes to you and your mum!
    Dora
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Kadykel
    Welcome to this forum, one which is extremely helpful. It is filled with warm, caring people, many of whome have been or are, in a similar position as your Mom. I think you have already been given some good advice, I don't really have any to add, but make sure you ask any questions you might have. Remember to take deep breaths.
  • Kadykel
    Kadykel Member Posts: 11
    luvmum said:

    My mum was diagnosed
    I totally understand how you feel right now. My mum was diagnosed 2.5 months ago (stage IV with liver met, not operable plus Kras mutated). Since then I live in pain, worry and feel miserable all the time. I'm not a tough type of person. I wasn't able to sleep nor to eat. I lost as many pounds as my mum lost.
    But I can reassure you, you will feel better after a while (for me, I only start feeling a bit better in the last few days).
    I live with hope and always hope she will recover one day. I also give her hope that she will recover.
    I prepare a comfortable environment for her to live, prepare organic food, design well-balanced diet meals. I give her hand, foot massage every now and then, just to keep her skin moist. Have warm water everywhere because she is very sensitive to cold stuff (side-effect from oxaliplain).
    I watched a Japanese documentary yesterday and there is a lady who was diagnosed with two different types of cancer 33 years ago at aged 71 and she lives till now (104 years old). This is very encouraging!
    Hang in there. I only cry when I go out to do grocery shopping for my mum.
    Best wishes to you and your mum!
    Dora

    Thank you
    Thanks for your encouragement. I am about a month behind you. Your mom is lucky to have you. I am glad I found this forum as I will come back and look for encouragement. Hopefully I can eventually offer some help and support to others. Take care and best wishes to you and your mom!

    Kelly
  • geotina
    geotina Member Posts: 2,111 Member
    Kadykel said:

    Thank you..
    I have been to every appointment and do take a notebook. I have the meds written down and will get them and post here. You are right...it is shocking. Still in shock. I so appreciate you answering. I believe she is being given the ones you names and the oxaliplatin. When she had her tests we did ask exactly where it was. It is where I shared. We specifically asked about other organs and they are clear. The tumor on the kidney was not biopsied. He is not certain that it is Colon Cancer, but at this point said he would not worry about it, would just watch it to see how it responds to the treatments given. My mom is having problems with the cold. She has a very thorough Nurse Practioner give her all of the possible side effects and I wrote it down. She is really just having the fatigue, general feeling of "crap" and not much tolerance of the cold. She is also having trouble eating, as nothing seems to sound good, but she is eating.

    I will be at every treatment as I work for some very understanding people. I have built up quite a few sick days and will take them. I have many questions, but just don't ask in front of my parents as they just want to know what they need to do and then will do it. I guess as time goes on, I will feel a little more "OK" with asking questions. I am making her tell every things she is feeling. She had severe pain in her right side between Christmas and New Year and when she had her port and first chemo on the 3rd, we told the doctor. He did a CT scan as he said blood clots were possible. However her scan was clear. Since then the pain is gone.

    I am very blessed to live near them and be able to help. Just want to do all I can. She is very big on vitamins, alternative meds as well as medical treatments. If anyone has any suggestions, please share them.

    Thank you so, so much for your support!

    HI
    and welcome to the board. You already have been given great information. You did mention that your mom takes vitamins and alternative meds. Make sure you clear these with the doctor. The reason being is that some alternatives and supplemens may interfere with the chemo and the docs don't want you taking them. Most stuff is ok to take but we were warned not to take stuff without running it past the oncologist. Several others on the board were told the same thing.

    Many times it it two steps forward and then one step back so just remember, one step at a time.

    Take care - Tina
  • Kadykel
    Kadykel Member Posts: 11
    AnneCan said:

    Kadykel
    Welcome to this forum, one which is extremely helpful. It is filled with warm, caring people, many of whome have been or are, in a similar position as your Mom. I think you have already been given some good advice, I don't really have any to add, but make sure you ask any questions you might have. Remember to take deep breaths.

    Thank you
    I like the thought of remembering to breathe.....thanks.