Vectibix and moving forward

JLittleton
JLittleton Member Posts: 3
in Colorectal Cancer #1

Found this forum tonight.  First post !!!

Got a miraculous type result from my recurrence stage 4 non-curable cancer from Folfiri chemo and Vectibix combination.  Treated from July to December.  After late December PET scans, oncologist is moving forward with Vectibix every 4 weeks. There is a patient in his practice with a similar stage 4 diagnosis that has lived 6 years on Vectibix after chemo.

I am experiencing my worst Vectibix side effects two weeks out from last treatment. Rash is bad on face, scalp, chest, back, upper legs, and now on stomach for the first time.  Several nail corners are bleeding on fingers and toes and several hang type nails.   Most nails have dark stains under the nails too.  

Oncologist indicated he can adjust amount and timing of treatment.  It is an odd dynamic.  I don't want to cut back on something that has worked, yet this time the side effects are much stronger.  I plan on calling office to discuss options prior to next infusion.  

Part of me says this is illogical and to just deal with it (I can as it is mostly irritations and cosmetic stuff and not pain). However, oncologist said it should be a lighter rash and implief it would not be this intense.  Has anyone been cut back on something like this before?  I am very conflicted.  

Also, I will take any and all tips on Vectibix rash management - especially the face.

Comments

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #2
    I have read on another forum

    I have read on another forum that icing hands and face before and during treatment really helps.  And going to a dermatoligist fimiliar with chemo treatment to prescribe a cream just for the rash side effects.

  • abita
    abita Member Posts: 1,152 Member
    #3
    I am erbutix, which I believe

    I am erbutix, which I believe is similar. Which ointments and antibiotics have you tried? The oncology dermatologist prescribed 3 creams for me. One for face, and inner nose, yep, I get one spot in there every now and them, and two for body. My rash is definitely not as bad as you describe yours to be. The itching in one spot was very bad this past week, so I used one of the creams, and it worked immediatley. Usually, I can get relief by a hot shower. I just reread your post. The derm even gave me something to use on my scalp if I got a rash there. I don't get bleeding in the nail beds. I get infections, that HURT so bad that I literally scream if my cat so much as rubs against it. I find mine get better with a little medicine and trimming the nail so that is not pressing into skin. I still can't believe I have gotten used to dealing with pus in my nail beds. I wish I could offer more help but I haven't gotten to the point of yours yet.

    You don't say if the pet scans showed you as NED, but because you are stage 4 they want you on that drug to prevent or recurrence or if you still have small mets that they want to keep stable. What is the status.

  • JLittleton
    JLittleton Member Posts: 3
    edited February 2021 #4
    abita said:

    I am erbutix, which I believe

    I am erbutix, which I believe is similar. Which ointments and antibiotics have you tried? The oncology dermatologist prescribed 3 creams for me. One for face, and inner nose, yep, I get one spot in there every now and them, and two for body. My rash is definitely not as bad as you describe yours to be. The itching in one spot was very bad this past week, so I used one of the creams, and it worked immediatley. Usually, I can get relief by a hot shower. I just reread your post. The derm even gave me something to use on my scalp if I got a rash there. I don't get bleeding in the nail beds. I get infections, that HURT so bad that I literally scream if my cat so much as rubs against it. I find mine get better with a little medicine and trimming the nail so that is not pressing into skin. I still can't believe I have gotten used to dealing with pus in my nail beds. I wish I could offer more help but I haven't gotten to the point of yours yet.

    You don't say if the pet scans showed you as NED, but because you are stage 4 they want you on that drug to prevent or recurrence or if you still have small mets that they want to keep stable. What is the status.

    This is a treatment stage for

    This is a treatment stage for a reoccurence from rectal cancer 4 years ago. I was suppose to be in permanent remission. The cancer was in nodules that were diagnosed and biopsied and deemed Sarcoidosis.  So the cancer and Sarcoid were providing mixed signals. Cancer then spread to lungs and lower back.
     We are still trying to wrap our brain around NED which I believe is the term the oncologist used.  He qualified it by saying the cancer is actually still there based on experiences and patients. it was explained to us that I have less than 20% chance to live 5 years and anything after that is a miracle.  He has a few more chemo options to use at some point, but there is momentum for Vectibix treating me for an extended period.  As a healthy 55 year old, I choose to believe I will be an outlier. Everything about my original diagnosis and the recurrence was some crazy anomaly or outlier.  we hope Vectibix will be the catalyst to extend way past the 5 years.  we have a sixth grader that deaerves the same attention, love, schooling and opportunities that our college age boys received.  
    i have one antibiotic cream I used while under chemo but have tried in awhile.  Sounds like I should find a dermatologist with specialized knowledge.  How can I do that?  Just call local offices?

  • JLittleton
    JLittleton Member Posts: 3
    edited February 2021 #5
    SnapDragon2 said:

    I have read on another forum

    I have read on another forum that icing hands and face before and during treatment really helps.  And going to a dermatoligist fimiliar with chemo treatment to prescribe a cream just for the rash side effects.

    I need that process !!!   I

    I need that process !!!   I am using a gel that is like vasiline that keeps skin from drying and helps the scabbing.  Fortunately, the COVID mask hides the wet face and rash most days 

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member
    #6
    JLittleton said:

    I need that process !!!   I

    I need that process !!!   I am using a gel that is like vasiline that keeps skin from drying and helps the scabbing.  Fortunately, the COVID mask hides the wet face and rash most days 

    I just went back to the other

    I just went back to the other forum and searched.  The member says antibotic and steroid cream along with icing hands, face and neck.  They said its best to start the rash scrips 2 wks before treatment starts but she didn't know that and stated it is still working fairly well even though started after chemo began.  I would ask the onc for a derm referral and if he doesn't know of any just start calling.

  • abita
    abita Member Posts: 1,152 Member
    edited February 2021 #7
    SnapDragon2 said:

    I just went back to the other

    I just went back to the other forum and searched.  The member says antibotic and steroid cream along with icing hands, face and neck.  They said its best to start the rash scrips 2 wks before treatment starts but she didn't know that and stated it is still working fairly well even though started after chemo began.  I would ask the onc for a derm referral and if he doesn't know of any just start calling.

    I think the topical cream

    I think the topical cream that stops my itching immediately has a steroid in it

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited February 2021 #8
    The Rash

    We have had several forum members who have suffered the rash. Two I can think of, one has passed. Trya search for Phil64, and type in rash, it may bring something up. 

    OK, I typed in Rash Phil64 and a whole bunch of post came up.  This one is VERY old 2009 - so don't reply to it - but may have some infor that might be helpful.  https://csn.cancer.org/node/169103

    Try a search and see what you come up with. 

    Tru

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    edited February 2021 #9
    Welcome and Sorry

    Welcome to the boards, but I'm sorry you have to be here.  You have found a very caring, informative board that can give you a lot of information.  I'm not able to help you with the type of treatment you have taken, but you will have many chime in here that can help.  Wishing you the best going forward and come back when you have more questions to help you get through this.

    Kim

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