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jmaddox915
jmaddox915 Member Posts: 80 Member
edited March 2014 in Colorectal Cancer #1
I am 39 years old and was dx with Stage IV colon cancer. I had surgery on August 10th to remove the tumor in my colon and started on Folfox 6 in late August and recently added Avastin in October. I have had 5 treatments and my last CT scan showed no shrinkage but also no additional growth.

I have disease in my lymph nodes in my abdomen area, lung, small spot on my liver (size of a quarter) and neck.

I didn't have any symptoms and was really caught off guard with this.

I am dealing with this badly emotionally. I have a 5 yr old daughter and a great husband. There are times I think it would be best if I just lived out what time I have left with them to best we can then I wonder if there is something that I might be missing. I just stay so sick after my chemo treatments, it doesn't seem worth it if this is my long term solution.

Are there any "old timers" that have any suggestions for questions I should be asking my doctor when I go back on the 9th? She is not sure as of last week whether or what we will change to for my chemo treatments.

I am just so glad I found this board. I believe in God and I am not afraid to die as I know I will have a heavenly home. However, I really feel like I can continue to do good things here and want to grow old with my husband and watch my little girl grow up.
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Comments

  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #2
    So sorry....
    I'll add you to my prayers.

    We have one other member who had mets to her lymph node in her neck at the time of DX. Butterfly23 is her user name. You might do a search and read her story. She's posted just recently, also.

    God bless and wishing you health.

    Diane
  • chicoturner
    chicoturner Member Posts: 282
    #3
    Welcome to this site
    I am so sorry you have to be here, but please listen. You cannot give up! You have things to do. You will show your daughter what it is to fight. You have every reason just with that 5 year old to fight and plan to win. I am happy you have faith in God, I know that He will step in, but expects you to do your part as well. You are a Mom and oh so much stronger then you think today. Right now it is all overwhelming, but there will be days when you are tough! I Have a daughter, just married in May and a 2 year old granddaughter
    I'm fighting for. You can do it! Jean
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #4
    Praying for you
    I'm glad you found this site. There are quite a few people here who've been fighting this thing a long time, and they will be able to offer you some good advice.

    I have not had any treatment beyond surgery, so I can't give you advice, but I will pray for you.

    *hugs*
    Gail
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #5
    tootsie1 said:

    Praying for you
    I'm glad you found this site. There are quite a few people here who've been fighting this thing a long time, and they will be able to offer you some good advice.

    I have not had any treatment beyond surgery, so I can't give you advice, but I will pray for you.

    *hugs*
    Gail

    May God give you the
    May God give you the strength you need to fight this. Focus on getting through each day, each hoiur, whatever works. You will have down days, it is human, but pick yourself back up and fight this nasty illness. YOu are young and have a familoy that needs you, you have alot to live for. Vent as much as you need on this borad, there is alot of support here. God Bless. Petrina
  • coloCan
    coloCan Member Posts: 1,944 Member
    #6
    Don't give up
    No matter how down,depressed,scared you get don;t give up; if not for yourself then for your family. You read the stories of all on this web site and you see most of us go thru such feelings. You don't realize how strong you are(physically,mentally,emotionally) until you start going thru your treatments. It takes time. I know its hard to be positive but you_have to snap out of your negative slumps....Steve
  • ittapp
    ittapp Member Posts: 383 Member
    #7
    Hello, I am also stage IV
    Hello, I am also stage IV with numerous liver mets and it was in my lymphnodes and stomach. I have been on Folfox for what will be my 11th treatment tomorrow. It has done some shrinkage but still tell me I am inoperable. So your not alone on this board, I will be happy to talk to you about anything. I was DX in May and had my colon resected. The treatments so far have been managable, my biggest complaint is constipation! I do have some fatigue but I get up, get my shower and push myself. I still do everything I did before by just getting in there and fighting. I have my down days and they are sooooo tough but I remember why I am fighting, I have a 10 yr.old girl and 13 yr.old son who need me so much. I have been married to my high school sweetheart for 19 years. I am a young 41 yr.old and have much fight in me. I will conquer this beast!!! Stay in there and lets fight together. GOd Bless you, Patti
  • ittapp
    ittapp Member Posts: 383 Member
    #8
    ittapp said:

    Hello, I am also stage IV
    Hello, I am also stage IV with numerous liver mets and it was in my lymphnodes and stomach. I have been on Folfox for what will be my 11th treatment tomorrow. It has done some shrinkage but still tell me I am inoperable. So your not alone on this board, I will be happy to talk to you about anything. I was DX in May and had my colon resected. The treatments so far have been managable, my biggest complaint is constipation! I do have some fatigue but I get up, get my shower and push myself. I still do everything I did before by just getting in there and fighting. I have my down days and they are sooooo tough but I remember why I am fighting, I have a 10 yr.old girl and 13 yr.old son who need me so much. I have been married to my high school sweetheart for 19 years. I am a young 41 yr.old and have much fight in me. I will conquer this beast!!! Stay in there and lets fight together. GOd Bless you, Patti

    Juicer
    I wanted to add that I am currently looking to purchase a juicer and will be juicing veggies. There is a thread on here calling all juicers...read it and see what you think. It has worked for people, and it should give you more energy also, get second and third opinions for treatment. I have had 3 opinions and all agree I should stay on Folfox to get the most out of it since I have had significant results. Patti
  • TLG320
    TLG320 Member Posts: 167
    #9
    You're in my prayers
    Welcome, and I'm sorry you have to be here. I've only been here a few weeks myself. My husband was diagnosed with cc several weeks ago. His surgery is scheduled for Nov. 9th. I don't have much advice to offer as we're very new to this, but know that you're in my prayers. You've got so much to fight for. Stay strong, take it one day at a time - it is worth it! You will beat this!
    Tashina
  • jmaddox915
    jmaddox915 Member Posts: 80 Member
    #10
    TLG320 said:

    You're in my prayers
    Welcome, and I'm sorry you have to be here. I've only been here a few weeks myself. My husband was diagnosed with cc several weeks ago. His surgery is scheduled for Nov. 9th. I don't have much advice to offer as we're very new to this, but know that you're in my prayers. You've got so much to fight for. Stay strong, take it one day at a time - it is worth it! You will beat this!
    Tashina

    Thank you
    Thank you to everyone that responded to my discussion. I also appreciate the prayers.
  • robinvan
    robinvan Member Posts: 1,012
    #11
    Stage 4 Here
    I am so sorry to hear of your diagnosis. What a shock to have it so far advanced when first diagnosed!

    I've been stage 4 for over 5 years. Surgery has helped to clear my liver of mets. Chemo too! I have enjoyed these 5-years very much and am grateful for the extra years treatment has brought me.

    You will get a lot of good advice here on this board. To begin with, don't lose your resolve. You have so much to live for here. It may seem hopeless at times but you would be surprised how many new treatment options there are out there.

    Are you close to a major cancer center? Sometimes they have a capacity that smaller centers don't. If you ask this group for suggestions in your state/region you will get some leads.

    Managing the emotional climate is tough. Let your faith carry you when you are really low. Otherwise enjoy being a Mom and wife with a great family as much as you can.

    Peace and blessings... Rob; in Vancouver
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #12
    Welcome, and sorry you have
    Welcome, and sorry you have a need to be here with us. This is a great group of people for information and support. So you've found a good place to be.

    If you need a place to vent, or to ask a question, or to share a funny story, this is a good place to do it.

    You say you are dealing badly emotionally. Have you asked in your oncologist's office if they have anyone to refer you to? My colon cancer nurse navigator said they can assist with psychological help too if I want it. And they have a colon cancer support group that meets once per month. I think finding someone to talk to could be helpful.

    There are lots of us here with children still at home - and I think for us that is one of the main things that keeps us battling hard. I will keep you in my prayers. Please keep us updated on how you are doing.
  • sfmarie
    sfmarie Member Posts: 602
    #13
    Welcome
    I am sorry to meet you in this manner. Your story is eerily similar to my sister. She too was dx in 03/09 at age 39 with Stage IV cancer, mets to her liver and abdomen. She is on her second round of chemo. She has three small children ages 8, 6 and 4. She too had no symptoms, but a trip to the ER when the tumor perforated her colon and she had severe stomach pains. She has seen many, many top specialists and they all agree on the treatment; Systemic chemo. She is currently on Avastin with 5FU and Oxalyplatin. I recently went to a Colon Cancer Alliance Seminar at UCSF where a 15 year stage IV colon cancer survivor attended. There are alot of long term survivors. The kindness and support on this board is amazing. It breaks my heart to read all of these stories, but there is HOPE. Please e=mail me if you have questions. I have had people reach out to me that are long term survivors and mothers like you that I would be happy to put you in touch with them. God bless. Marie
  • jmaddox915
    jmaddox915 Member Posts: 80 Member
    #14
    sfmarie said:

    Welcome
    I am sorry to meet you in this manner. Your story is eerily similar to my sister. She too was dx in 03/09 at age 39 with Stage IV cancer, mets to her liver and abdomen. She is on her second round of chemo. She has three small children ages 8, 6 and 4. She too had no symptoms, but a trip to the ER when the tumor perforated her colon and she had severe stomach pains. She has seen many, many top specialists and they all agree on the treatment; Systemic chemo. She is currently on Avastin with 5FU and Oxalyplatin. I recently went to a Colon Cancer Alliance Seminar at UCSF where a 15 year stage IV colon cancer survivor attended. There are alot of long term survivors. The kindness and support on this board is amazing. It breaks my heart to read all of these stories, but there is HOPE. Please e=mail me if you have questions. I have had people reach out to me that are long term survivors and mothers like you that I would be happy to put you in touch with them. God bless. Marie

    Marie,
    Thank you for your
    Marie,

    Thank you for your post to my discussion. How long has your sister been on chemo? The chemo treatments are really getting me down. I can't imagine living on chemo like this long term. It saps the quality out of life. I can deal with it if I know there is a light at the end of the tunnel.

    I keep looking for success stories to help boost my mental strength.

    I really appreciate you reaching out to me today.

    I hope your sister is doing well on her treatment.

    Sincerely,

    Joan
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #15
    Welcome
    First, welcome to the boards, and secondly, I'm sorry you had to find us. You are not alone here on these boards and have found a new family. You being emotional about finding out that you have cancer is normal and we have all been there. Chemo treatments can be hard on your system, your emotions and your family. You will be going through a roller coaster of different things. If you need emotional support, questions answered or anything, just post - someone is usually on at all hours of the day.

    Kim
  • sfmarie
    sfmarie Member Posts: 602
    #16
    jmaddox915 said:

    Marie,
    Thank you for your
    Marie,

    Thank you for your post to my discussion. How long has your sister been on chemo? The chemo treatments are really getting me down. I can't imagine living on chemo like this long term. It saps the quality out of life. I can deal with it if I know there is a light at the end of the tunnel.

    I keep looking for success stories to help boost my mental strength.

    I really appreciate you reaching out to me today.

    I hope your sister is doing well on her treatment.

    Sincerely,

    Joan

    Joan,
    My sister started chemo shortly after recovery from her surgery, April sometime. She started on Erbitux, and was on that for about 4 months. She stopped in order to have liver resection. While off the chemo, the cancer spread to her lymph nodes. Liver resection was cancelled and now she is on Avastin and Oxy. The Oxy is getting to her, but I must say she has managed to not let it control her life. She lives in beautiful Santa Barbara and manages to go out paddling in the ocean which she loves.
    I suggest discussing managing the side effects with your doc. Have you gotten a second opinion? Where do you live? Seems I have done sooo much research I could point you to some specialists throughout the country.
    Blessings, Marie
  • jmaddox915
    jmaddox915 Member Posts: 80 Member
    #17
    sfmarie said:

    Joan,
    My sister started chemo shortly after recovery from her surgery, April sometime. She started on Erbitux, and was on that for about 4 months. She stopped in order to have liver resection. While off the chemo, the cancer spread to her lymph nodes. Liver resection was cancelled and now she is on Avastin and Oxy. The Oxy is getting to her, but I must say she has managed to not let it control her life. She lives in beautiful Santa Barbara and manages to go out paddling in the ocean which she loves.
    I suggest discussing managing the side effects with your doc. Have you gotten a second opinion? Where do you live? Seems I have done sooo much research I could point you to some specialists throughout the country.
    Blessings, Marie

    Marie,
    The oxy is getting to
    Marie,

    The oxy is getting to me too. I can't eat or drink much of anything for at least 3 or 4 days. I am so tired and fatigued that I don't even feel like helping my daughter with her baths or homework.

    I live near Raleigh, NC and I am currently going to the Cancer Center of NC. I have spoken with my doctor about a second opinion. She suggested getting one after this first cycle of chemo.

    When I get a chemo treatment it normally takes me about 6 or 7 days to get "right" again. then that leaves me about 5 good days.

    I hear so much about juicing and other alternatives. You just don't know what to believe or do.

    I welcome any information you may have.

    Sincerely,

    Joan
  • Shayenne
    Shayenne Member Posts: 2,342
    #18
    Annabelle41415 said:

    Welcome
    First, welcome to the boards, and secondly, I'm sorry you had to find us. You are not alone here on these boards and have found a new family. You being emotional about finding out that you have cancer is normal and we have all been there. Chemo treatments can be hard on your system, your emotions and your family. You will be going through a roller coaster of different things. If you need emotional support, questions answered or anything, just post - someone is usually on at all hours of the day.

    Kim

    Hi Joan!
    It's nice to meet you! Welcome to our family, I am also Stage 4 CC with mets to my liver. I am inoperable so far, and am on Folfiri and Avastin, which my condition is being treated like a chronic disease, I will probably be on chemo forever, but Folfiri isn't as bad as Folfox I think, I haven't been on oxi, I'm scared of it, but I just wanted to let you know we're all here for you, I have 4 children and a great hubby, who are just great at helping me around the house if I need it.

    The chemo does knock you out, but sometimes I been having chemo and actually feeling better because of it, I don't know if my body is getting used to it, but I'm on like my 14th round, and have been hospitalized many times with obstructions, and a couple of infections, but you have to roll with the punches. Just don't stay down when knocked down, and push yourself. Are you on any anti-depressants, or anti-anxiety meds? those help me alot as well, and the more I go out, the better I feel. I think sitting in a house really depresses one to much as well, where the walls are closing in on you, and you should get out even when you feel like you don't want too, since once you're out, you feel better. I get more energy that way.

    I hope to see you post more, and whenever you need to talk, we're here. But, don't let it get to you, keep on fighting it!!

    Hugsss!
    ~Donna
  • GOOFYLADIE
    GOOFYLADIE Member Posts: 232 Member
    #19
    Hi Joan
    I am an 11 year stage 4 colon cancer survivor it will be 12 yrs in February. I don't mean in treatment I mean clean and clear. I had a year of chemo leucovorin and 5FU for 3 months until my system shut down. Then we did 5FU and some kind of cocktail thing every 7 days for the next 7 months. I am here. To tell you about it. I have 3 boys. At the time they were 10, 7 and 4. They are now 21, 18, and 16. I watched my 21 year old graduate jr college. My 18 year old graduate high school and my 16 yr old get his drivers license so far. There is nothing more rewarding in this life. I know the days seem soooo looonnnnngggggg when sick on chemo. I had my best days were when I had the energy to get up from the recliner to go to the bathroom and then get a bottle of water out of the fridge. That was a fantastic day. I know how it wears on you. This board was not hear at that time, I was alone in this battle I was only 31 and the closest person to my age was 64 years old. They had no idea what I was going thru. Or the things that were going on in my life those things they had already dealt with years ago. Believe in great things, believe in blind faith, believe in your family, your doctors, your care givers, and the unknowing, sometimes that that which we do not know, carrys us through.
    Sometimes, not knowing every little thing, stops us from worrying and allows us to rest, and allows us to heal. Not wasting our energy on needless things. Only the important. I hope you stay open to what everyone says, they are all trying to help. You choose what works for you. May you heal in Gods hands, God's Speed. Goofyladie (Cass) PM private message me anytime.
  • thready
    thready Member Posts: 474
    #20
    Sorry you are here
    I am so sorry that you have a need to be here, but very glad that you found us. There is so much wisdome on this board.

    Folfox is rough. I just had treatment #2 and I am having problems from the get go. I am learning to manage these problems and how to live with what I get from it. There are those who have had such difficulty with this cocktail that they needed to have parts of it reduced or take away. There are those of us who are learning the tricks of surviving the effects of the meds, one of the big ones for me is to stay hydrated, but that has been tough since I get sick and can not drink or eat for several days. I have 5 nausea meds that I take and this weekend I will have home health come in and give me I.V. fluids electrolytes and nausea meds.

    I was not going to do treatment at all, but the people on this board have shown me that I can get through this. We all make our choices and your choice will be embraced by those on the board, but they will always encourage you to choose life. You have already shown you are courageous and a fighter, please don't stop now. You have choices like different meds, adding other meds, taking away meds that give you fits, you can get second opinions from clinics and Doctors that might have a different way, or will confirm you are on the right path. You have already done the most important part and that is seeking the advise of those who have walked before you. You might want to read posts from Phil and Buzzard. Diane and Lisa42. There are so many more.

    I will pray that the meds kill this awefull intruder to your family, and pray you can get back to feeling like your self. You already have proven you are an awesome mom and wife
    Take care
    Jan
  • butterfly23
    butterfly23 Member Posts: 256
    #21
    thready said:

    Sorry you are here
    I am so sorry that you have a need to be here, but very glad that you found us. There is so much wisdome on this board.

    Folfox is rough. I just had treatment #2 and I am having problems from the get go. I am learning to manage these problems and how to live with what I get from it. There are those who have had such difficulty with this cocktail that they needed to have parts of it reduced or take away. There are those of us who are learning the tricks of surviving the effects of the meds, one of the big ones for me is to stay hydrated, but that has been tough since I get sick and can not drink or eat for several days. I have 5 nausea meds that I take and this weekend I will have home health come in and give me I.V. fluids electrolytes and nausea meds.

    I was not going to do treatment at all, but the people on this board have shown me that I can get through this. We all make our choices and your choice will be embraced by those on the board, but they will always encourage you to choose life. You have already shown you are courageous and a fighter, please don't stop now. You have choices like different meds, adding other meds, taking away meds that give you fits, you can get second opinions from clinics and Doctors that might have a different way, or will confirm you are on the right path. You have already done the most important part and that is seeking the advise of those who have walked before you. You might want to read posts from Phil and Buzzard. Diane and Lisa42. There are so many more.

    I will pray that the meds kill this awefull intruder to your family, and pray you can get back to feeling like your self. You already have proven you are an awesome mom and wife
    Take care
    Jan

    Welcome!
    Hi Joan, I was also diag stage 4 at the age of 38. I will be 40 yrs old in Dec. Mine started because I had a swollen lymph node in my neck,after getting checked they found a tumor in my colon, I did 5fu for 12 treatments. I was very fatigued!!! Just recently they found I have spots on my lungs and spine, so now I am on xeloda, oxyaplatin and avastin. I have only done 4 treatments. I go every 3 weeks. As soon as I start to feel good It seems it's time for another treatment. I know how you feel, we all do! Do you have anyone who can help you! Take advantage of it! Chemo does suck, but right now I am not ready for the alternative, I am too young, and so are you! Keep fighing! We are all here for you!!

    Karyn

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