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NJC
NJC Member Posts: 73 Member
edited March 2014 in Colorectal Cancer #1
New to the boards and thought I would finally say hello to a community I never wished to ever be part of. Having said that, it is what it is and now it's time to make the best of a bad situation.

My wife (33 years old) was dx in September of this year with Stage IV adenocarcinoma with 7 FDG avid lessions scattered thoughout her liver as well as several more dime sized non FDG avid lessions throughout. All total we're looking at a dozen or more lessions in and on the surface of the liver.

To say I/we was/were devestated would be an understatement. We have an 8m old son that I hope she gets to see grow up. I can't imagine him losing his mother before he really has any memories of her!

She's currently on FOLFOX6 + Avastin, as she's a mutant. So far she seems to be tolerating the chemo well- for the most part. Usual fatigue, dirrahea, etc.

Luckily, we have been able to assemble one of the best surgical oncology teams in the country but I can't help but wonder if that is going to be enough.

Her CEA level was 56 right after emergency surgery, 36 prior to chemo and now it's down to 28 after 3 treatments. I'm a little concerned with the minimal movement after 3 treatments of chemo but at least we're moving in the right direction. We have a PET/CT scheduled for Wednesday to determine the long term plan of attack so I'm hopeful we will get good news.

I know each and every cancer is different and to say you or she will respond exactly the same would be foolish but I have been encouraged by the success stories of the IVs on this board.

Hopefully, as the years pass by, we will be able to look back on this experience and be very thankful for the second chance at life she was given!

Happy Holidays!

NJC
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Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Welcome
    Yes and everyone agrees, welcome to a board you never wanted to belong to, but rest assured that we are so great here. Treatment has come so advanced in recent years and the treatment your wife is on is agressive in the cancer she has. Don't focus on the CEA, a drop of any amount is good and the PET/CT scan will show more of what is going on than a CEA blood test. Please keep us posted.

    Kim
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Welcome
    Welcome to the board! I understand your reluctance to join this "club." Your wife is young to have to deal with this, and I pray that she will have a LONG time to enjoy watching your son grow up.

    I know you want faster and better results, but it does seem like the CEA is making definite progress in the right direction.

    Hang in there, and don't hesitate to ask questions, share your fears, whatever you need to do.

    *hugs*
    Gail (diagnosed with Stage 1 colon cancer in sigmoid on 11/21/07)
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Hey NJC
    Welcome to the board. I'm so sorry to hear of your wife's dx. It must be really tough with an 8 month old too but what a great motivator he must be for her. I'm sorry you had to join but we will now declare you part of our semicolon family. HUGS

    About your wife's CEA?? a lot of people actually have their CEA go up with the first few treatments. There is a phenomenon where the cancer cells express CEA as they die and it can cause the CEA levels to rise. So to have her levels going down after just 3 treatments is a very good thing. Congratulations!

    I was just disconnected from my 3rd round of FOLFOX on Weds. so she definitely qualifies as a member of our current FOLFOX club. There are about 8 or so of us at about the same place in treatment here on the board. We have plenty of caregivers as well here on the board so you are in good company.

    I will be wishing for the very best for her with her scans this coming week. Happy holidays to you and yours too!
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
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    Oh, I am so very sorry that


    Oh, I am so very sorry that you are on this board at such a young age, but welcome NJC. You've certainly come to the right place for support. And I too am a caregiver, so feel free to send me a PM if you have any questions or just want someone to talk to.

    Take care, Cynthia
  • NJC
    NJC Member Posts: 73 Member
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    Thank you!
    Thank you all so much for the kind words and offers of support! If there is anything I can do for anyone on this board please don't hesitate to ask.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    Welcome
    We all wish this board didn't have to exist, but are certainly greatful to have the sharing and caring of others who understand the road we are traveling.

    I am sure your son will give you and your wife that extra boost to get past the worst and hope for the best.

    Glad you have reached out to us. Whatever info you need, or if you need to vent, or if you just need some uplifitng words just let us know. Someone is always around to offer all they can to help another.

    Happy Holidays to you and your lovely family. May there be many more.

    Marie
  • idlehunters
    idlehunters Member Posts: 1,787 Member
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    Welcome
    We all wish this board didn't have to exist, but are certainly greatful to have the sharing and caring of others who understand the road we are traveling.

    I am sure your son will give you and your wife that extra boost to get past the worst and hope for the best.

    Glad you have reached out to us. Whatever info you need, or if you need to vent, or if you just need some uplifitng words just let us know. Someone is always around to offer all they can to help another.

    Happy Holidays to you and your lovely family. May there be many more.

    Marie

    Hey NJC
    Nice to meet you. Sorry about your gal. I cannot even imagine trying to raise a baby while going thru this. Hats off to ALL of you out there with this inner strength. As others have said.... progress is being made every day and survivors are plentiful. You definately have the right attitude towards this. The forum is an awesome place. Looking forward to sharing LIFE with you. Take care.

    Jennie
  • mommyof2kds
    mommyof2kds Member Posts: 519
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    Hey NJC
    Nice to meet you. Sorry about your gal. I cannot even imagine trying to raise a baby while going thru this. Hats off to ALL of you out there with this inner strength. As others have said.... progress is being made every day and survivors are plentiful. You definately have the right attitude towards this. The forum is an awesome place. Looking forward to sharing LIFE with you. Take care.

    Jennie

    Welcome to the board, alot
    Welcome to the board, alot of information here. good place for support... Take care.
  • Erinb
    Erinb Member Posts: 293
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    NJC said:

    Thank you!
    Thank you all so much for the kind words and offers of support! If there is anything I can do for anyone on this board please don't hesitate to ask.

    Our baby was 8 months when
    Our baby was 8 months when my husband was diagnosed too. That was almost two years ago. If they still have tissue from her previous surgery you can get a chemosensitivity test , response DX, genetic test (whatever terminology you want to use) done to see which chemo her tumor would best respond to. There is some information on the board-maybe someone else will chime in with a specific company that does the testing. The doctor would have to send the tumor to California where various genes are tested.
    Erin
  • Crow71
    Crow71 Member Posts: 679 Member
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    Hey NJC,
    Another stage IV

    Hey NJC,

    Another stage IV here. Mets to liver and lungs. I remember when my kids were young and cute like your little guy. Mine are 11, 8 and 4.

    Don't worry about the CEA. It may mean something. It may not. The scan will tell the tale.

    It's great to have such confidence in your doctors. I feel the same about mine (Wake Forest), but I didn't hesitate to get a 2nd opinion from Duke at the beginning and at Sloan before surgery in April.

    I've been at this for 16 months but I don't what "FDG" means. At first I thought it was **** Dam Goodfornothing.

    Good luck on Wednesday. Let us know how it goes.

    Roger
  • suz_3
    suz_3 Member Posts: 17
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    Welcome
    My family and I know what you are going through. I was diagnosed last year at age 33 with stage 3, but it then moved to my ovary (had hysterectomy) and now has moved to the liver. I have three small children and I can tell you that they are the reason I keep going. Please tell her to focus on him and that she WILL see him grow up. Take it one day at a time and soak up every minute with that precious boy. I hope she continues to handle the chemo well.

    Suzanne
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
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    suz_3 said:

    Welcome
    My family and I know what you are going through. I was diagnosed last year at age 33 with stage 3, but it then moved to my ovary (had hysterectomy) and now has moved to the liver. I have three small children and I can tell you that they are the reason I keep going. Please tell her to focus on him and that she WILL see him grow up. Take it one day at a time and soak up every minute with that precious boy. I hope she continues to handle the chemo well.

    Suzanne

    Welcome from a DAD downunder
    You and your wife and your son have fight. Its just a suggestion but take some great shots
    of your son on his own, with you, with your wife and all together. And then put them all over the house, kitchen, the bathroom, whereever. Maybe get a couple of photo keytags featuring your son. Your wife can look at him while she getting treated and even one for you when work might be frustrating.

    I found looking at the things I love and cherish keeps me positive and focused. It may help you.

    I love my photography, its like my treasure not money. The beauty I have experienced, recorded is the reason why I am so attached to this wondeful life. I found looking over my favourite albums very relaxing.

    You may find with so much going on, its hard to be relaxed, but now relaxing is my main priority, even before diet, exercise and the other things I am trying.

    Everyday I tell my wife and kids I love them breakfast and dinner. Maybe I did this before cancer but its more meaningful now. Give your boy and wife an extra hug. They need it and will love you for it.
  • plh4gail
    plh4gail Member Posts: 1,238 Member
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    So sorry
    So sorry for your wife's diagnosis and that you are all having to go through this. You will find a lot of support here on this board. ....Hugs,good wishes, prayers and hope's to your family.

    Gail
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    welcome
    Hello and welcome to the board- maybe your wife can even get on the board at some point.
    I didn't have a little baby upon my diagnosis, but I did/do have three kids (and a husband) who still need me very much! (dx in 8/07 stage IV w/ mets in lungs and liver & am still going strong).
    Sometimes I find myself envying people who can come home from a treatment and just sleep when I have my family to take care of, BUT then I realize how fortunate I am and that they are what keep me going. Getting up at 6 in the morning to get them all up and off to school each weekday and driving them around where they need to be, cooking, helping them homework, etc. is also what keeps me going! I like that I have others to focus on and keep my mind off myself. It gives me a bigger reason to fight like crazy and try to beat the cancer monster. My faith in Jesus keeps me strong and going- I personally can't imagine going through this all without that & am so grateful I have that.
    I will add your wife (and you & the baby too) to my prayer list, if that's okay with you.

    Hugs,
    Lisa
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Welcome NJC!
    I am sorry you have a need to here but I am glad you found us. This place can (literally)be a lifesaver + definitely a sanity saver at times. It sounds like your wife is doing well with treatment. Your baby, while I am sure a busy one, will give you both motivation in this battle. Good luck! I hope we will see you here often.
  • NJC
    NJC Member Posts: 73 Member
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    Erinb said:

    Our baby was 8 months when
    Our baby was 8 months when my husband was diagnosed too. That was almost two years ago. If they still have tissue from her previous surgery you can get a chemosensitivity test , response DX, genetic test (whatever terminology you want to use) done to see which chemo her tumor would best respond to. There is some information on the board-maybe someone else will chime in with a specific company that does the testing. The doctor would have to send the tumor to California where various genes are tested.
    Erin

    Erin,
    First off, your

    Erin,

    First off, your daughter is adorable!!!!

    As for the genetic testing, we had that done prior to the start of chemo. Hence, why she is on FOLFOX + Avastin.

    My wife and I just had this conversation today pertaining to our son and how he is going to be instrumental in her plight against this vicious disease! Luckily, he is such a wonderful and easy going kid. Sleeps all night, doesn't fuss unless he's hungry or tired and is fairly independent. All I can say is that God knew what he was doing!!!! Otherwise, I'm sure this would have been a lot harder than it is already going to be.

    Best wishes!

    Joe
  • NJC
    NJC Member Posts: 73 Member
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    Crow71 said:

    Hey NJC,
    Another stage IV

    Hey NJC,

    Another stage IV here. Mets to liver and lungs. I remember when my kids were young and cute like your little guy. Mine are 11, 8 and 4.

    Don't worry about the CEA. It may mean something. It may not. The scan will tell the tale.

    It's great to have such confidence in your doctors. I feel the same about mine (Wake Forest), but I didn't hesitate to get a 2nd opinion from Duke at the beginning and at Sloan before surgery in April.

    I've been at this for 16 months but I don't what "FDG" means. At first I thought it was **** Dam Goodfornothing.

    Good luck on Wednesday. Let us know how it goes.

    Roger

    Roger,I completely agree
    Roger,

    I completely agree with you concerning having such great confidence in your doctors. We have Dr. Bartlett. He was one of the physcians responsible for developing the HIPEC procedure at the University of Pittsburgh Medical Center. We're very hopeful that his expertise and experience will translate into a second chance. Only time will tell.

    FDG pertains to the metabolic activity of cancer cells. Just means they are busy at work. The non FDG avid lessions are more than likely cancer but may be to mucinious to show any activity.

    Thanks to you and everyone else for the well wishes and kind words. I wish the best to you and everyone else!!!

    -Joe
  • Nana b
    Nana b Member Posts: 3,030 Member
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    AnneCan said:

    Welcome NJC!
    I am sorry you have a need to here but I am glad you found us. This place can (literally)be a lifesaver + definitely a sanity saver at times. It sounds like your wife is doing well with treatment. Your baby, while I am sure a busy one, will give you both motivation in this battle. Good luck! I hope we will see you here often.

    Welcome to the club no one wants to be a member of!
    I hope that this board will help give you answers to some of your questions and gives you some peace of mind! It's scary as hell, I know....some of tension will ease up, but it is a difficult journey. Take lots of pics and make lots of memories with the baby. I have 11 grand kids and 4 daughters, that is what I try to do.. I'm a stage IV survivor, in remission for over a year and not taking anything for granted! Hugs!!!
  • Crow71
    Crow71 Member Posts: 679 Member
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    NJC said:

    Roger,I completely agree
    Roger,

    I completely agree with you concerning having such great confidence in your doctors. We have Dr. Bartlett. He was one of the physcians responsible for developing the HIPEC procedure at the University of Pittsburgh Medical Center. We're very hopeful that his expertise and experience will translate into a second chance. Only time will tell.

    FDG pertains to the metabolic activity of cancer cells. Just means they are busy at work. The non FDG avid lessions are more than likely cancer but may be to mucinious to show any activity.

    Thanks to you and everyone else for the well wishes and kind words. I wish the best to you and everyone else!!!

    -Joe

    I had HIPEC at Wake Forest
    I had HIPEC at Wake Forest last April. I went to Sloan Kettering for a second opinion and was told that Wake and Pitt are great places. I've recently learned that Maryland is also a great place to go for liver and peritoneal mets. Dr. Bartlett is definitely among the best. For now it's a crap shoot as to whether or not the chemo works. Folfox worked for me. Folfori did not. Hopefully Folfox will work again. My 2nd treatment is this week.

    Hoping for good scan results.

    Take care,
    Roger
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
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    Folfox
    Folfox (or Folfiri) + Avastin is the standard treatment for Stage IV.

    Some suggestions that seemed to help me through the treatment:

    Protein supplements (Muscle Milk). I used to mix mine in the blender with my morning coffee. On off weeks, when I could drink cold, I would make a shake using water, ice cubes, lots of peanut butter and the chocolate Muscle Milk. I believe that this regimen kept my WBC count up all during treatment.

    I always felt better if I ate well prior to the treatments.

    Talk with your oncologist about all the side effects. They can adjust the treatment to make some of them manageable, or even go away!

    Good luck,