Maintenance chemo like Erbitux

sonyk728
sonyk728 Member Posts: 124
in Head and Neck Cancer #1
Happy to report I had my first clean PET scan and last chemo last week. I'm still on my 5FU fanny pack until Monday, but so glad to be at the end of treatment!

My chemo doc is researching putting me on a maintenance chemo like Erbitux. Of course I'm hoping I don't have to do this, but what from he tells me about Erbitux it's only a 2 hour infusion every 2 weeks. It's a lighter chemo in that you don't lose any hair (already lost mine any way), and about the worst side effect is facial and chest acne.

What has been your experience with maintenance chemo like Erbitux?

- Sonja

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Hi Sonyk
    Here's the truth of the situation, and this cannot be sugar-coated. I have read your bio, and for purposes of this discussion, there is no advantage to pretending the monster isn't lurking somewhere. You have metastatic disease. Youve had a very good response to treatment, but the odds are high that the enemy is still out there waiting. That's just the nature of the thing.

    Erbitux for maintenance is a marvelous idea for you. It has been shown to significantly delay reoccurance, and for most, it is simple enough to take. There are exceptions to the rule, and I was almost one. I was on erbitux for about 18 weeks, but found myself to be an overresponder. This eventually lead to them having to discontinue the medication. But understand that,different than traditional chemotherapy, the overresponse was not life threatening. The drug does not cause damage to kidneys, or neurologic system, or bome marrow. It is simply skin reaction, not life threatening. My experience is not the ordinary with this drub, I very dramatically overresponded, and it wasn't just acne. And it isn't more than about 5% of us that respond this way.

    There is, in my mind, no question you should be on this drug.

    Best to you.

    Pat
  • jtl
    jtl Member Posts: 456
    #3
    longtermsurvivor said:

    Hi Sonyk
    Here's the truth of the situation, and this cannot be sugar-coated. I have read your bio, and for purposes of this discussion, there is no advantage to pretending the monster isn't lurking somewhere. You have metastatic disease. Youve had a very good response to treatment, but the odds are high that the enemy is still out there waiting. That's just the nature of the thing.

    Erbitux for maintenance is a marvelous idea for you. It has been shown to significantly delay reoccurance, and for most, it is simple enough to take. There are exceptions to the rule, and I was almost one. I was on erbitux for about 18 weeks, but found myself to be an overresponder. This eventually lead to them having to discontinue the medication. But understand that,different than traditional chemotherapy, the overresponse was not life threatening. The drug does not cause damage to kidneys, or neurologic system, or bome marrow. It is simply skin reaction, not life threatening. My experience is not the ordinary with this drub, I very dramatically overresponded, and it wasn't just acne. And it isn't more than about 5% of us that respond this way.

    There is, in my mind, no question you should be on this drug.

    Best to you.

    Pat

    I was on Erbitux concurrent
    I was on Erbitux concurrent with radiation for 8 weeks. The worst side effect was facial acne for about two weeks. This was treated with antibotics and that took care of it.
    Regards
    John
  • sonyk728
    sonyk728 Member Posts: 124
    #4
    longtermsurvivor said:

    Hi Sonyk
    Here's the truth of the situation, and this cannot be sugar-coated. I have read your bio, and for purposes of this discussion, there is no advantage to pretending the monster isn't lurking somewhere. You have metastatic disease. Youve had a very good response to treatment, but the odds are high that the enemy is still out there waiting. That's just the nature of the thing.

    Erbitux for maintenance is a marvelous idea for you. It has been shown to significantly delay reoccurance, and for most, it is simple enough to take. There are exceptions to the rule, and I was almost one. I was on erbitux for about 18 weeks, but found myself to be an overresponder. This eventually lead to them having to discontinue the medication. But understand that,different than traditional chemotherapy, the overresponse was not life threatening. The drug does not cause damage to kidneys, or neurologic system, or bome marrow. It is simply skin reaction, not life threatening. My experience is not the ordinary with this drub, I very dramatically overresponded, and it wasn't just acne. And it isn't more than about 5% of us that respond this way.

    There is, in my mind, no question you should be on this drug.

    Best to you.

    Pat

    I appreciate your candid response
    Thanks Pat. I guess in the back of my mind I know he'll put me on Erbitux and that it is a good idea. I'm already dreading my next PET scan on July 6. They told me that if I get clean scans for 2.5 years I should be good to go. That's a long time, considering my history. I just want to be done with all this, but should just enjoy that I have a clean scan now. Probably time I look into some post-treatment/survivorship (can I call it that?)posts to get some inspiration.

    Best to you,
    Sonja
  • sonyk728
    sonyk728 Member Posts: 124
    #5
    jtl said:

    I was on Erbitux concurrent
    I was on Erbitux concurrent with radiation for 8 weeks. The worst side effect was facial acne for about two weeks. This was treated with antibotics and that took care of it.
    Regards
    John

    Thanks for your feedback
    John- thanks for your response. Love the picture of your dog. Is that a lab mix? So cute.

    Happy St. Patrick's Day!

    - Sonja
  • sonyk728
    sonyk728 Member Posts: 124
    #6
    jtl said:

    I was on Erbitux concurrent
    I was on Erbitux concurrent with radiation for 8 weeks. The worst side effect was facial acne for about two weeks. This was treated with antibotics and that took care of it.
    Regards
    John

    Thanks for your feedback
    John- thanks for your response. Love the picture of your dog. Is that a lab mix? So cute.

    Happy St. Patrick's Day!

    - Sonja
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    sonyk728 said:

    I appreciate your candid response
    Thanks Pat. I guess in the back of my mind I know he'll put me on Erbitux and that it is a good idea. I'm already dreading my next PET scan on July 6. They told me that if I get clean scans for 2.5 years I should be good to go. That's a long time, considering my history. I just want to be done with all this, but should just enjoy that I have a clean scan now. Probably time I look into some post-treatment/survivorship (can I call it that?)posts to get some inspiration.

    Best to you,
    Sonja

    there are people who beat the odds
    and it is my fervent wish that you are one of those. OTOH, you should be as aggressive as possible with this thing. In your mind, go right ahead and image yourself as being disease free. there is absolutely nothing wrong with doing that. Will yourself to be cured. At the same time, acknlowledge that this other is necessary, and just knuckle down and do it. Thats what i do every day, it is even part of my Tai chi practice. That will be the very best of both situations.

    Pat
  • sonyk728
    sonyk728 Member Posts: 124
    #8
    longtermsurvivor said:

    there are people who beat the odds
    and it is my fervent wish that you are one of those. OTOH, you should be as aggressive as possible with this thing. In your mind, go right ahead and image yourself as being disease free. there is absolutely nothing wrong with doing that. Will yourself to be cured. At the same time, acknlowledge that this other is necessary, and just knuckle down and do it. Thats what i do every day, it is even part of my Tai chi practice. That will be the very best of both situations.

    Pat

    Thanks Pat... on a related note
    I keep seeing posts about NED. What does that mean?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #9
    sonyk728 said:

    Thanks Pat... on a related note
    I keep seeing posts about NED. What does that mean?

    You are NED
    It simply refers to the fact that current workup shows "No Evidence of Disease..."
  • jtl
    jtl Member Posts: 456
    #10
    sonyk728 said:

    Thanks for your feedback
    John- thanks for your response. Love the picture of your dog. Is that a lab mix? So cute.

    Happy St. Patrick's Day!

    - Sonja

    Her name is Katie and she is
    Her name is Katie and she is an American Water Spaniel.
    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    Sonja - Positive Thoughts
    Sonja, I just want to remind you that you are not a number or statistic...you are you. Each of us are different and bring a wide array of genetics and characteristics to the table.

    Try to stay positive, stay healthy and eliminate the stresses that you can.

    Thoughts an prayers for a long and healthy life.

    Best,
    John
  • sdp
    sdp Member Posts: 181
    #12
    Erbitux maintenance
    Hi sonja,

    My onc is also recommending maintenance chemo of erbitux - but weekly not biweekly.

    For atleast 3 months after completion of adjuvant chemo. my adjuvant chemo of 2 balance treatments of FOLFOX plus erbitux gets over in two days.

    Pl share details of your experience and how long u been on the erbitux maintenance chemo,

    Scan results, has it been effective ? Was it worth the severe effects of drying and peeling of skin,
    Severe facial acne and rashes on the chest, face, hands back etc.

    Did you suffer from the above side effects ? How did u contour the side effects etc.

    Thanking you in anticipation of a quick response.

    Regards

    Shitiul
  • phrannie51
    phrannie51 Member Posts: 4,716
    #13
    Sonja....I have thought about you
    since you posted in the summer...wondering how things were going. Sounds like things are going pretty darn good!! I don't know anything about Erbitux, having never had it...but from what Pat has said, it sounds like this might be your ticket...I HOPE SO!!

    There sure are a lot of gutsy people on this site, and you're one of them!! Sending positive thoughts, and prayers your way...

    p
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #14
    Erbitux Not Bad At All
    I had Erbitux each week to help radiation. The only side effect was slight nausea, never enough to cause vomiting. However, crackers (saltines) became my friend. I found it was best never to have either an empty stomach or a full stomach. I nibbled all day, to just keep a little something in the stomach. Didn't gain or lose weight. Rick.

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