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scan results

ittapp
ittapp Member Posts: 383
edited March 2014 in Colorectal Cancer #1
I got my results today and I am heartbroken!! the liver tumors have grown and a couple of new ones popped up. We are just devastated, I got the day off to digest this news and will start Ironotecan tomorrow. The Onc. said that my tumors just became resistent to the chemo. I just do not know what to do! I am just so shocked at the huge setback after getting great results and being so positive. I am sorry for whining I know so many of you have been through all of this and have rebounded. Please give me any advice and or your story, what to expect from this cocktail etc. I know hairloss is not the end of the world but that is just another thing to digest and to break to my kids tonight. My Onc. said I would for sure lose my hair, but I know Donna did not lose her hair. So, I am hoping maybe it won't happen. People have said (that don't have cancer) that it's just hair it will grow back well, not as long as your on chemo it won't! God Bless you all, Patti
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Comments

  • damama24
    damama24 Member Posts: 174
    scan results
    I'm so sorry to hear about your set back. I will be praying for you and keep you in my thoughts. Please try to stay positive and fight back with all you have. I am new to the fight and sometimes get down on myself but coming to this site helps me realize there is hope and maybe some day a cure. I hope for that for you,me and everyone else fighting this beast.
  • just4Brooks
    just4Brooks Member Posts: 980
    I like bald women
    Hi Patti, Sorry to hear your bad news but loosing your hair is not the end of the world. Just one more hurdle to get over. Hey... bald women are kind of sexy!! Just keep up the fight every day and we'll get through this TOGETHER.



    Life is funny sometimes
    Brooks
  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    I'm so sorry
    I'm sorry you received this news. I am sure you are devastated. What is the route that the oncologist wants to do. Is there a plan of action that is going to be followed with a new treatment regimine? I do hope that things get better for you and I will be thinking and praying for you.

    Kim
  • Fight for my love
    Fight for my love Member Posts: 1,522
    Hi Patti,I was worried about
    Hi Patti,I was worried about you and I was waitting for your post.I don't like the bad news.You are in my prayers and I will continue to pray the new cocktail drug will be very effective and kill all the tumors.You know,many people are seeking for different opinions and new protocols,there is always hope.This is not a easy journey,there are bumps and detours on the road,hang in there,your efforts will surely lead you to a cure.Good luck with everything.
  • Shayenne
    Shayenne Member Posts: 2,342

    Hi Patti,I was worried about
    Hi Patti,I was worried about you and I was waitting for your post.I don't like the bad news.You are in my prayers and I will continue to pray the new cocktail drug will be very effective and kill all the tumors.You know,many people are seeking for different opinions and new protocols,there is always hope.This is not a easy journey,there are bumps and detours on the road,hang in there,your efforts will surely lead you to a cure.Good luck with everything.

    Hey Patti,
    THe Irinotecan stabilized the tumor in my liver, are they going to be putting you on Avastin also? this would cut off the blood supply to the tumors that are feeding them and making them grow, and they will be taking the Irinotecan away from me after 3 more treatments, and keeping me on Avastin and 5fu every 3 weeks. I'm kind of happy to be just another week without it.

    Don't worry, I know quite a few people on my cocktail who still have their hair as well. You will see clumps falling in the shower, I was in tears also when I saw it, don't feel bad about it when you do, hair is a part of you, and it is scary to see it go, but they have some cool wigs out there that you can't even tell is real half the time!

    Good Luck with it, I hope this helps the tumors, it sure did me, it did shrink them, but didn't make them go away, I have alot.

    Hugsss!
    ~Donna
  • Sundanceh
    Sundanceh Member Posts: 4,392
    Heartbroken Too :(
    Oh, Patti

    I woke up late and saw this right away - I'm devastated and at a loss right now.

    I know that cancer can become resistant to chemo after awhile, so this new drug may do good things where the other had stopped working. I know I was facing a switch because Folfox was no longer tolerable and we had discussed this as the next step for me at one time.

    I'm really speechless right now and I won't wear you out with any more words - other than to say I'm still praying for you along with the rest of the board and we can see how the new treatment works for you.

    You are in my thoughts as always - take this setback but remain positive, the mind is still powerful and you need it to keep going. I am still praying for a miracle.

    -Craig
  • lesvanb
    lesvanb Member Posts: 905
    Patti
    This is such a hard disease. What I want to do is just rock you and rock you. I'm glad you have the day off and if you can be outside and just onto hold the earth, or something of the earth, it can help stabilize the surges of emotion. Your family and friends of course are wonderful for this too, and in addition, I've found. I don't have any experience with the irinotecan but lots of folks here do and they can give you some practical tips. Holding you close in my heart.

    Leslie
  • dianetavegia
    dianetavegia Member Posts: 1,942
    Patti
    I am so very sorry to hear this news.

    Diane
  • grammadebbie
    grammadebbie Member Posts: 464
    So Sorry
    Dear Patti,

    I havn't been posting for a while but have been around. I'm so sorry about your latest results. I will keep you in prayer. Never worry about sharing your feelings....we all do it and this is a great place because people understand. It doesn't matter if you are stage I or stage IIII - we are all facing the same monster. I am stage IIIc and have been clear for 2 years, I feel bad complaining because so many people would love to be 2 years out, but I also know that people here understand how I feel. I know you will receive alot of support and information from those who have faced a similar situation. You must continue to share your feelings without hesitation. You are a fighter and we are all here for you.

    Please keep us updated.

    God Bless You,
    Debbie (gramma)
  • angelsbaby
    angelsbaby Member Posts: 1,165

    So Sorry
    Dear Patti,

    I havn't been posting for a while but have been around. I'm so sorry about your latest results. I will keep you in prayer. Never worry about sharing your feelings....we all do it and this is a great place because people understand. It doesn't matter if you are stage I or stage IIII - we are all facing the same monster. I am stage IIIc and have been clear for 2 years, I feel bad complaining because so many people would love to be 2 years out, but I also know that people here understand how I feel. I know you will receive alot of support and information from those who have faced a similar situation. You must continue to share your feelings without hesitation. You are a fighter and we are all here for you.

    Please keep us updated.

    God Bless You,
    Debbie (gramma)

    I am sorry
    Too. Its just a set back you will get on new chemo and kick the cancer in the butt. Never lose hope,

    michelle
  • pluckey
    pluckey Member Posts: 484
    I didn't lose all my hair
    It slowly thinned throughout my Chemo (12 rounds), I stopped chemo a month ago and it's growing back already!

    When I first started chemo, I always said, "I have short hair anyways, losing it won't be so bad". Hah, famous last words - as the chemo ravished my body and I was losing so much weight, I thought, that losing the hair was THE sign I was sick, not just skinny and ugly.
    I'm totally OK with it now, and even though I have a very expensive wig that looks GRAT and makes me look like th OLD Peggy, I'm fine going baldy. Like everything else in this shitty cancer battle, the feelings and acceptance of each challenge evolve and we fighters eventally get to a place of acceptance or understanding.

    My thoughts are with you as you face this next challenge. ((HUGSS))

    Peggy
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Patti
    Dearest Patti,
    I am so very sorry that you got such hard news. Cancer is such a beast. I am praying for you. I like the comment about people out and in touch with the earth, a walk, sitting in the sun. I know those are little things, somehow they ground me at times. At other times a drive in the car, with the windows rolled up, the radio blasting and screaming my lungs out works.

    **** is on Folfori and Avastin. He has not lost his hair. He is getting the 5th treatment today.

    With aloha and prayers,
    Kathleen
  • geotina
    geotina Member Posts: 2,111
    Bump in the road
    I am so sorry that you did not receive the news you had hoped for. You have hit a major bump in the road but you must keep going to beat this monster down. Go and have yourself a good cry, have a full blown freak out, anything you need to do then go in tomorrow and face that darn chemo. Take care for now as you face this new challenge - Tina
  • mom_2_3
    mom_2_3 Member Posts: 952
    Patti
    Patti,

    I am sorry that the scan results aren't as you hoped, as we had hoped for you. It is hard to get bad news bit have faith that this is just a bump in the road to your healing.

    I have not had Irinotecan so cannot comment on hair loss or other side effects. I lost a lot of my hair on Folfox but at some point the loss stopped and the hair started growing again. Just be positive that the chemotherapy will work on your liver tumors and your hair will grow back (if you even lose it at all). A good friend of mine lost a lot of hair on Folfox but had a wig made prior to treatments starting. Her closest friends of years do not know the difference.

    I have mentioned it to others who also have currently unresectable liver mets and that is to consider getting an opinion for an HAI pump at Memorial Sloan Kettering in NYC. The therapy has done wonders for getting people I have met to liver resectability. If you want to PM me, please do so and I will help you in any way that I can.

    Amy
  • This comment has been removed by the Moderator
  • idlehunters
    idlehunters Member Posts: 1,787
    unknown said:

    This comment has been removed by the Moderator

    Patti
    I was on the exact same cocktail as Donna. My hair got very thin. No big bald "spots" just very thin hair. My hair was down to my waist. I did end up cutting it shoulder length to make it look fuller. I even dyed it a few times... couldn't stand the gray... and it still held up to that. I did end up getting a wig, eyebrows and eyelashes.... to make ME feel pretty. My husband insisted I didn't need it but every time I looked in the mirror I felt like a cancer patient... nope..that wasn't gonna work. When I go out I put on my hair...awesome wig...better than my own hair..and so easy...put on my make up...and I feel good about me. Your new drug I think is awesome! It sure did the trick for me along with the Avastin. Keep the faith.... things WILL work out. Take care

    Jennie
  • lisa42
    lisa42 Member Posts: 3,625
    me too
    Hi Patti,

    I'm sorry to hear your scan results. We seem to be a bit in the same boat- I also got my scan results back today & my results aren't that great either.
    My numerous lung nodules remained the same size, but the PET "uptake"/metabolic activity has gotten more intense in all of the nodules. I also have new nodules in my liver, as well.
    As you begin irinotecan tomorrow, I'll be flying across the country to begin a new treatment that will hopefully take care of it. I apparently have become resistent to the chemo too. I had been on the Folfiri twice now, along with Avastin.

    So far as hair loss, I did not lose my hair with irinotecan either, like Donna. It has become a lot thinner though, but no bald spots. Ask for some good antinausea meds and some prescriptions strength anti diarrhea meds. Maybe you won't need prescription strength though, as Donna said immodium was enough for her. It wasn't enough for me, so I got the prescription Lomotil & that did the trick. I have to take it pretty much every day.

    Well, I will be thinking about you this week as we're both starting new treatments.
    You take care & God bless-
    Lisa
  • coloCan
    coloCan Member Posts: 1,944 **
    Sorry to hear of your setback but don't give up, Patti!
    Never had ironotecan but be positive, as difficult as that may be,you may have more success with this weapon ....Steve
  • AceSFO
    AceSFO Member Posts: 229
    coloCan said:

    Sorry to hear of your setback but don't give up, Patti!
    Never had ironotecan but be positive, as difficult as that may be,you may have more success with this weapon ....Steve

    sorry to hear it
    Hi, Patti,

    Sorry to hear about this setback. Hopefully you can see it as that, just a hurdle to get past and things will pick up again soon. Meanwhile I'll be sending lots of good thoughts and prayers your way. At least you've got this amazing group of people to back you up - it would most definitely be worse without this gang!
    Hang in there!
    Adrian
  • robinvan
    robinvan Member Posts: 1,012
    So Sorry
    So sorry to hear of your poor scan results.

    I've had three rounds of irinotecan. I lost my hair on the second go round. I was taking it along with xeloda and avastin. I started irinotecan a couple of weeks ago with erbitux. I had severe diarrhea and the irinitecan has been dropped for now. Have lots of imodium on hand!

    I hope it does the trick for you.

    Rob; in Vancouver