Plan in place, but need advice

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sasjourney
sasjourney Member Posts: 395 Member
edited March 2014 in Colorectal Cancer #1
Hi friends,

I, too, have some bad news. I met with Dr. Lenz on Thursday about my reoccurance in three lymph nodes. He thinks I should start on Folfiri and Erbitux and follow that with radiation. Once everything is clear then he recommends HIPEC to kill any remaining cells. It is all so overwhelming and difficult to deal with. I spent the whole day yesterday crying and upset, but now I know I have to keep moving forward and take it one step at a time. Everytime I look at my 2 young daughters (9 and 14) I just lose it and pray that God allows me to be here for them and help them grow up. I don't know why they have to go through all this when they should just be able to enjoy their childhood without all these worries. He said my case is very unusual as the cancer is in the inguinal lymph node which is where colon cancer never travels as it travels upward. He also has never seen anyone with it in there because the lymph system does not drain that way, but he said this could actually be a positive, though. The biopsy done in Dec. of the lymph node confirmed it was colon cancer. I am going to MD Anderson on the 26th for their opinion as well.

Any advice on Folfiri and Erbitux (not sure if I am spelling it right) would be appreciated.

Thanks for all your support and prayers. I don't know what I would do without this board.

Hugs,
Sara
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Comments

  • chicoturner
    chicoturner Member Posts: 282
    #2
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    Oh Sara, I am thinking of
    Oh Sara, I am thinking of you today. It is so hard to get your head around all the new information, but you will. Find a good friend and just talk, talk and talk. Say what you need to say and repeat yourself as much as you need to. Somehow you will be able to release some of your fear so you can actually deal with it, and you will deal with it. I will be praying for you. Jean
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #3
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    Hey Sara!
    Folfiri killed ALL my mets in liver and lungs. In a short period of time. You will follow suit..... You gonna be around a long time to raise those baby girls! Take care.

    Jennie
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #4
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    chicoturner said:

    Oh Sara, I am thinking of
    Oh Sara, I am thinking of you today. It is so hard to get your head around all the new information, but you will. Find a good friend and just talk, talk and talk. Say what you need to say and repeat yourself as much as you need to. Somehow you will be able to release some of your fear so you can actually deal with it, and you will deal with it. I will be praying for you. Jean

    Hi Sara first of all cheer up , I feel sorry for your
    for your reoccurrence , mine is very similar case as yours, as l have my lymph nodes affected too , I can't tell you about Erbitux as I had Avastin
    but had folfiri too , is a relatively manageable drug , just some stomach issues mainly diarrhea but in my case easy to deal with ,just immodium.
    The hair loose is another issue, you must be prepared to loose it nearly sure.Concerning to radiation it's been very successful in my and for the moment nodes are clean, no major side effects with it! Just tired last weeks but manageable!.
    Just hang there, cheer up!.
    Big hugs from here Sara!.
  • kluong
    kluong Member Posts: 23
    #5
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    idlehunters said:

    Hey Sara!
    Folfiri killed ALL my mets in liver and lungs. In a short period of time. You will follow suit..... You gonna be around a long time to raise those baby girls! Take care.

    Jennie

    Erbitux
    My hubby is currently on Erbitux and it has been wonderful for him. The first six weeks are the worse because of the rash. It is mostly on the upper part of the body (from chest to face). However, after six weeks, it does get less noticeable. His lymph nodes and bones have responding to the Erbitux. The liver is another matter. It has stopped responding and we are trying other options.

    We are in Houston TX and currently receiving treatment at Methodist Hospital at the Medical Center. I originally wanted to go to MD Anderson but the wait to see a MD was around 6 weeks and when my hubby was dx, he was in so much pain and so far in the disease that we could not wait.

    Kim
  • sasjourney
    sasjourney Member Posts: 395 Member
    #6
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    Thanks Jean, Pepe, Jennie and Kim
    I am doing a little better today. Thank you for all your support.

    Hugs,
    Sara
  • Crow71
    Crow71 Member Posts: 679 Member
    #7
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    Hey Sara - I really hate
    Hey Sara - I really hate this for you. What you said about your kids really hit home with me. I've had to really stay focussed when I'm with my kids (daughters 11 and 6, and 4 year old son) to keep from losing it.
    I had HIPEC last April; so let me know when you are getting ready for it and I'll help you if you like.
    Take care Sara. Many sparks to you. Better days are ahead.
    Roger
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #8
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    dear Sara
    Hi my friend,

    I'm sorry you're having to deal with this, but Folfiri and Erbitux cam definitely knock everything out of there. I don't have experience with the HIPEC, but many people here have had it & can give you advice on it. If that's what Dr. Lenz is recommending, I think I'd go with it. I'll be very interested in how your trip to MD Anderson goes.
    Let's talk- I'll give you a call in the next couple of days.

    Praying for you-
    Lisa
  • dmdwins
    dmdwins Member Posts: 454 Member
    #9
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    lisa42 said:

    dear Sara
    Hi my friend,

    I'm sorry you're having to deal with this, but Folfiri and Erbitux cam definitely knock everything out of there. I don't have experience with the HIPEC, but many people here have had it & can give you advice on it. If that's what Dr. Lenz is recommending, I think I'd go with it. I'll be very interested in how your trip to MD Anderson goes.
    Let's talk- I'll give you a call in the next couple of days.

    Praying for you-
    Lisa

    Been thinking of you
    Dear Sara,

    I have been thinking of you so often knowing that you would be seeing Dr. Lenz for your plan. As you know, I can completely understand how you feel when you look at the girls. My heart would just ache and I could not stop the tears...My faith as I know is yours as well is strong....but their are things that God allows that I just dont understand why...

    You know that I am here to walk with you,talk with you, pray for you ...whatever I can do my friend.

    Smiles,
    Dawn
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #10
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    Sorry
    So sorry to hear of the recent news. Can't help you on the treatment they are wanting you to go on but I'm hoping that it works well for you and gets you good results.

    Kim
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #11
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    Hi Sara
    I am sorry for your news. Our kids sure give us reason to fight this tough battle. I am on folfiri + avastin; I haven't been on erbitux yet ( that is next for me). I am thinking of you + hoping for great outcomes.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #12
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    Praying for you
    Sara,

    Just praying that you will have many years with your children.

    *hugs*
    Gail
  • HollyID
    HollyID Member Posts: 946 Member
    #13
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    Sara,
    I don't have any sage
    Sara,

    I don't have any sage advice, but just know I'm thinking and praying for you!! Sounds like a "killer" combo of chemo though. :) That's a good thing!!

    Good luck to you, dear!
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #14
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    Sara
    I don't have any wise words for you, but I know you will fight this you have ever reason too. You have a good friend in Lisa, you are lucky to live so close to each other, and you have us on the board, plus your own family and friends.

    Praying for you Sara

    Love and hugs
    Sonia
  • sasjourney
    sasjourney Member Posts: 395 Member
    #15
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    Thanks all!
    Thank you for your support and kind words. I have decided to just enjoy this beautiful southern California day (should be in the 70's) with my family today. I will try very hard to not think about this disease and all that it has taken from all of us. I hope you all have a wonderful day.

    Big hugs,

    Sara
  • hopeforcure49
    hopeforcure49 Member Posts: 111
    #16
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    Crow71 said:

    Hey Sara - I really hate
    Hey Sara - I really hate this for you. What you said about your kids really hit home with me. I've had to really stay focussed when I'm with my kids (daughters 11 and 6, and 4 year old son) to keep from losing it.
    I had HIPEC last April; so let me know when you are getting ready for it and I'll help you if you like.
    Take care Sara. Many sparks to you. Better days are ahead.
    Roger

    Hey Roger
    I'm new to this site. What is HIPEC? I had my colon surgery last year and my liver resection on 11/29/10, just had a ct scan, don't know the results yet, but my CEA levels rose up from 25 presurgery to 55 post surgery. Is this a optional treatment for me?
  • hopeforcure49
    hopeforcure49 Member Posts: 111
    #17
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    sasjourney said:

    Thanks Jean, Pepe, Jennie and Kim
    I am doing a little better today. Thank you for all your support.

    Hugs,
    Sara

    Hi Sara
    I'm sorry for the news. Keep your head up high, don't loose the faith. I will have you in my prayers. God Bless....
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #18
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    Hi Sara
    Hi Sara,
    Oh I wish you didn't have this worry. Your kids are young and I want you to have a lifetime with them.
    I think **** is going to be put on the same regime as you by Dr. Lenz. After ****'s PET on Monday we will confer with Dr. Lenz and the local oncologist.
    I am praying for you and your family.
    I hope you enjoy the beautiful So Cal day. I am from Orange County and I know those days can be wonderful! Go out there and enjoy it.

    Aloha,
    Kathleen
  • lesvanb
    lesvanb Member Posts: 905
    #19
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    sasjourney said:

    Thanks all!
    Thank you for your support and kind words. I have decided to just enjoy this beautiful southern California day (should be in the 70's) with my family today. I will try very hard to not think about this disease and all that it has taken from all of us. I hope you all have a wonderful day.

    Big hugs,

    Sara

    lots of love to you Sara
    I'm so sorry that you have to head down this path, and I love how you are going out to enjoy your beautiful SoCal day. I love the light of SoCal in the winter.

    all the best, Leslie
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #20
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    Sara
    Sara,

    I have no advice on that particular chemo combination. I am sorry that you and your family are dealing with this. My only advice is to just look at this like eating the elephant, one bite at a time. Get through the chemo and then worry about radiation. Do radiation and then worry about HIPEC. You will be here to see your precious girls.

    Amy
  • traci43
    traci43 Member Posts: 773 Member
    #21
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    HIPEC and Dr. Lenz
    Glad you were able to see Dr. Lenz. He's terrific and suggested HIPEC for me as well. I just posted on another topic about HIPEC, check it out or contact me for more info. Best of luck to you. Traci

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