Advise needed

janderson1964
janderson1964 Member Posts: 2,215 Member
Many of you know from previous posts that I am a six year survivor and am now recovering from my third liver resection. This time it was the entire right lobe and a piec of my diaphram where the tumor came out of the live and attached to my diaphram. What a surprise that was. Well I went back to see my surgeon and he just told me for the first time that he removed a soft tissue mass from my abdominal wall which didn't show up on the scan since it was soft tissue. He wa sure it was benign since it was soft but it turned out to be cancer.

Any way to make a long story short I went to see new oncologist. it was time for a change after 6 years. He said that since it spread outside of the liver he wants me to do 12 months of FOLFIRI plus Vectibix which I understand works the same as Erbitux. What are your experiences with Vectix/Erbitux. Does everyone get the rash and if so how bad is it.

Comments

  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    The rash
    Is pretty common, but the severity varies from person to person. I found it manageable with the antibiotic I was prescribed.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Buckwirth said:

    The rash
    Is pretty common, but the severity varies from person to person. I found it manageable with the antibiotic I was prescribed.

    Vectibix
    I took the antibiotic for the first month and then stopped as I don't need it. I may get a pimple looking spot here or there....usually just 1 or 2 on my nose...and I use the gel the doc gave me for that and the next day it is usually gone. My biggest thing with the vectibix is excessively dry skin. After a shower I am so dry I look and feel like a prune. I have tried many lotions but found after I shower I literally pour baby oil on my head and let it pour down my back....I soak my entire body in it.....rinse slightly...then pat dry. By the time I get dressed it has all soaked in....then I apply udder cream and carrot lotion. On my VERY dry areas...like my butt.... I apply coconut oil. I don't do folfiri anymore...just vectibix. The only other side effect I have from it is an occasional finger and/or toe will split open and bleed in the corner of the nail. Good luck to you.

    Jennie
  • janie1
    janie1 Member Posts: 753 Member

    Vectibix
    I took the antibiotic for the first month and then stopped as I don't need it. I may get a pimple looking spot here or there....usually just 1 or 2 on my nose...and I use the gel the doc gave me for that and the next day it is usually gone. My biggest thing with the vectibix is excessively dry skin. After a shower I am so dry I look and feel like a prune. I have tried many lotions but found after I shower I literally pour baby oil on my head and let it pour down my back....I soak my entire body in it.....rinse slightly...then pat dry. By the time I get dressed it has all soaked in....then I apply udder cream and carrot lotion. On my VERY dry areas...like my butt.... I apply coconut oil. I don't do folfiri anymore...just vectibix. The only other side effect I have from it is an occasional finger and/or toe will split open and bleed in the corner of the nail. Good luck to you.

    Jennie

    good morning
    Jeff, did the onc think the systemic will be enough for keeping the abdominal wall free of any more growth there? I have no experience with that, and this is probably a stupid question, but would something like Hipec be a good preventative? Radiation to the sternum? Again, no experience with radiation.
    Just be sure you are seeing the
    Top Dogs....
    I'm sure you are, but I'm curious (and a crazy, paranoid nut case) since I had bad experience.
    Glad the lobectomy is behind you.
  • janderson1964
    janderson1964 Member Posts: 2,215 Member

    Vectibix
    I took the antibiotic for the first month and then stopped as I don't need it. I may get a pimple looking spot here or there....usually just 1 or 2 on my nose...and I use the gel the doc gave me for that and the next day it is usually gone. My biggest thing with the vectibix is excessively dry skin. After a shower I am so dry I look and feel like a prune. I have tried many lotions but found after I shower I literally pour baby oil on my head and let it pour down my back....I soak my entire body in it.....rinse slightly...then pat dry. By the time I get dressed it has all soaked in....then I apply udder cream and carrot lotion. On my VERY dry areas...like my butt.... I apply coconut oil. I don't do folfiri anymore...just vectibix. The only other side effect I have from it is an occasional finger and/or toe will split open and bleed in the corner of the nail. Good luck to you.

    Jennie

    Thanks Jennie. That is
    Thanks Jennie. That is basically what my onc. told me but I like to hear from people who have experienced it first hand
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    janie1 said:

    good morning
    Jeff, did the onc think the systemic will be enough for keeping the abdominal wall free of any more growth there? I have no experience with that, and this is probably a stupid question, but would something like Hipec be a good preventative? Radiation to the sternum? Again, no experience with radiation.
    Just be sure you are seeing the
    Top Dogs....
    I'm sure you are, but I'm curious (and a crazy, paranoid nut case) since I had bad experience.
    Glad the lobectomy is behind you.

    That is the reason he wants
    That is the reason he wants to have me do treatment for 12 months rather than 6 months because they found it on my abdominal wall. What is Hipec.
  • janie1
    janie1 Member Posts: 753 Member

    That is the reason he wants
    That is the reason he wants to have me do treatment for 12 months rather than 6 months because they found it on my abdominal wall. What is Hipec.

    I'm not good at explaining
    I'm not good at explaining things. Buckeye2's husband just had this done, maybe she'll have some input.
    It's opening the abdomen and bathing the areas directly with chemicals. I don't want to jump to unnecessary worry, I was wondering if the doc mentioned it though. Not all places do it. Folfiri is powerful. So if they think that is the solution. Maybe someone here can give their thoughts on this. I know you were asking about erbitux, but it got me thinking (which I do too much of).
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    janie1 said:

    I'm not good at explaining
    I'm not good at explaining things. Buckeye2's husband just had this done, maybe she'll have some input.
    It's opening the abdomen and bathing the areas directly with chemicals. I don't want to jump to unnecessary worry, I was wondering if the doc mentioned it though. Not all places do it. Folfiri is powerful. So if they think that is the solution. Maybe someone here can give their thoughts on this. I know you were asking about erbitux, but it got me thinking (which I do too much of).

    I looked up HIPEC on line
    I looked up HIPEC on line and it does sound like a very good option. I am going to mention it to my Onc. and surgeon this week and see what they think. They work side by side at the same hospital.
  • maglets
    maglets Member Posts: 2,576 Member

    Thanks Jennie. That is
    Thanks Jennie. That is basically what my onc. told me but I like to hear from people who have experienced it first hand

    jeff
    oh Jeff so glad you came through the liver surgery.....

    it feels to me that you are blazing a path....for all of us with 2 resections

    sorry I cannot help with the chemo question....last one i did was xelox

    good luck and sending a a few big hugs....

    maggie