Erbitox

jim and i
jim and i Member Posts: 1,788 Member
in Head and Neck Cancer #1
Saw the oncologist today. He wants to do three infusions of Erbitox one week apart because Jim could not withstand the third chemo. Has anyone taken this drug and what side effects did you experience. He gave us a drug facts sheet that has some scary side effects listed but said most people only get the rash. Any help on this would be helppful. We want to do all we can to kick this in the butt. Jim said this morning that if this round of treatment doesn't get it he will not do any further treatment.

Debbie
«1

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    It's good stuff
    and may one day become the gold standard. It's been well received and effective in treatment. It's a targeted therapy where individual cancers cells are sought out and destroyed. Think of erbutux as a 'sniper" and cisplatin as "carpet bombing". There is nothing to lose as they will monitor closely. Deal with the side effects as they arise. If it gets bad the doctors will take him off it.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Chemo
    I havent had that particular drug, but many on here have.....

    I know that Jim is feeling a little defeated right now, give him a little time , then help get him the positive attitude to defeat this and to keep trying and never give up.

    BTW, use the chemo fact sheets for reference, but realize that more than likely you won't experience but a few of those side effects.

    Maintaining a positive outlook and frame of mind is huge during this stuff.

    Thoughts and Prayers,
    John
  • Ed_PortOrange
    Ed_PortOrange Member Posts: 110
    #4
    Positive Result
    I was treated with erbitux for 6 weeks along with daily rads. The only side effect was a breakout of skin blemishes on face, neck and upper back. During the treatment phase I'm not sure if my side effects were radiation caused or the erbitux. The major effect is the pimples and they say your nail growth, I didn't experience the nail thing? They also say the more the skin breakout the better the medicine is working. It was only an annoyance for the 1st three weeks I was infused. All ct's and pets have been clean so far and I'm 17 months post treatment. They have me taking a 200mcg selenium supplement daily to help clean up any radicals????

    I'm not asking any questions, it seems to be working!

    Fight your way through the treatment Jim, you can do it.

    Your in my prayers,

    Ed
  • jim and i
    jim and i Member Posts: 1,788 Member
    #5
    Ed_PortOrange said:

    Positive Result
    I was treated with erbitux for 6 weeks along with daily rads. The only side effect was a breakout of skin blemishes on face, neck and upper back. During the treatment phase I'm not sure if my side effects were radiation caused or the erbitux. The major effect is the pimples and they say your nail growth, I didn't experience the nail thing? They also say the more the skin breakout the better the medicine is working. It was only an annoyance for the 1st three weeks I was infused. All ct's and pets have been clean so far and I'm 17 months post treatment. They have me taking a 200mcg selenium supplement daily to help clean up any radicals????

    I'm not asking any questions, it seems to be working!

    Fight your way through the treatment Jim, you can do it.

    Your in my prayers,

    Ed

    Thanks guys
    we needed to hear that after reading the side effects and Jim suffering so many setbacks with the chemo.

    Blessings
  • robinleigh
    robinleigh Member Posts: 297
    #6
    Rash
    My husband did cisplatin and unfortunately has a recurrence. Now he is on erbitux and the wordy of it has only been the rash. They prescribe antibiotics for that just like they do for teenage acne. I also understand that it targets the cancer so must be worth it. Best wishes.
  • sue5749
    sue5749 Member Posts: 170
    #7
    Debbie
    Hi, my husband has had Erbitox I think 6 treatments, he did fine with it just a little try skin. Now he is taking 7 treatments of Cisplatian they told us that this is the real thing? I thought Erbitox was? Hope your husband doesn't give up. My husband is surly fighting! Been through hell and back, had a set back when they but his port in. He stopped breathing on the operating table. So theyhad to put in a track and then a feeding tube. Lost a lot of weight can not eat or drink anything by mouth now for 6 months. But he is not giving up! He said that he has said the sinners prayer so he knows where he is going if it is not Gods will that he leaves me and our family. He has been fighting this awful thing now for 10 months, and still he is fighting the fight, he is doing everything the doctors have told him to do, now it is Gods hand. This is all we can do. No more. Sue
  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
    sue5749 said:

    Debbie
    Hi, my husband has had Erbitox I think 6 treatments, he did fine with it just a little try skin. Now he is taking 7 treatments of Cisplatian they told us that this is the real thing? I thought Erbitox was? Hope your husband doesn't give up. My husband is surly fighting! Been through hell and back, had a set back when they but his port in. He stopped breathing on the operating table. So theyhad to put in a track and then a feeding tube. Lost a lot of weight can not eat or drink anything by mouth now for 6 months. But he is not giving up! He said that he has said the sinners prayer so he knows where he is going if it is not Gods will that he leaves me and our family. He has been fighting this awful thing now for 10 months, and still he is fighting the fight, he is doing everything the doctors have told him to do, now it is Gods hand. This is all we can do. No more. Sue

    Sue,
    Keeping you and your
    Sue,

    Keeping you and your husband [name?] lifted in prayer. Our faith is all we really have to hang on to that is sure and everlasting.

    Debbie
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    jim and i said:

    Sue,
    Keeping you and your
    Sue,

    Keeping you and your husband [name?] lifted in prayer. Our faith is all we really have to hang on to that is sure and everlasting.

    Debbie

    Faith, Family and Friends
    Use them all....stay positive and uplifted....

    True story....(my humor)

    When I read each of those chemo sheets, one each for Cisplatin, Taxotere, 5FU (I have a really hard time with the FU reference in this drug BTW) and CarboPlatin....

    And the huge stress on paying attention to a fever that reaches 100.5*. I told them I was gonna stick one of those electronic meat thermometers up my butt set to alarm at 100*. I wanted to know as soon as I was done.

    Best,
    John
  • jim and i
    jim and i Member Posts: 1,788 Member
    #10
    Skiffin16 said:

    Faith, Family and Friends
    Use them all....stay positive and uplifted....

    True story....(my humor)

    When I read each of those chemo sheets, one each for Cisplatin, Taxotere, 5FU (I have a really hard time with the FU reference in this drug BTW) and CarboPlatin....

    And the huge stress on paying attention to a fever that reaches 100.5*. I told them I was gonna stick one of those electronic meat thermometers up my butt set to alarm at 100*. I wanted to know as soon as I was done.

    Best,
    John

    Thanks for the laugh
    I will have to share that with Jim when he gets up ftom his nap. We need all the good laughs we can get. He goes for the first infusion today. Prey for no reactions.

    Debbie:)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    jim and i said:

    Thanks for the laugh
    I will have to share that with Jim when he gets up ftom his nap. We need all the good laughs we can get. He goes for the first infusion today. Prey for no reactions.

    Debbie:)

    With You
    You have the power and force of these people with you today....

    First is usually long depending on what is going on...don't forget to take yourself and Jim some snacks/lunch, they usually have drinks and a few snacks there.

    Our first day started around 08:30 and lasted until after 5:00...

    Blood Draw and Testing (don't forget to ask for a hard copy for your reference)
    Emend
    Several Bags of this that and the other (including Cisplatin and Taxotere)

    They use the pump slow at first, each time will get faster as they figure out how much and how fast he can take it.

    Reminds me, sit near the rest room, they give you lasix to help urinate out the chemo...., just an idea of how much you go..I was labeled "The Pee King", on my first day..., LOL.

    Hooked up with a fanny pack for the 5FU for the next four plus days... I said, "A fanny pack, "REALLY""...they said, nobody will even notice..., "I'm like ya right, only if I go to Disney, wear Bermuda Plaid Shorts, sandals with Black Socks and don't wear any Deodarant"....Geeez...

    Hmmm, they sent me home right after that, Go Figure...

    Thoughts and Prayers,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #12
    Skiffin16 said:

    With You
    You have the power and force of these people with you today....

    First is usually long depending on what is going on...don't forget to take yourself and Jim some snacks/lunch, they usually have drinks and a few snacks there.

    Our first day started around 08:30 and lasted until after 5:00...

    Blood Draw and Testing (don't forget to ask for a hard copy for your reference)
    Emend
    Several Bags of this that and the other (including Cisplatin and Taxotere)

    They use the pump slow at first, each time will get faster as they figure out how much and how fast he can take it.

    Reminds me, sit near the rest room, they give you lasix to help urinate out the chemo...., just an idea of how much you go..I was labeled "The Pee King", on my first day..., LOL.

    Hooked up with a fanny pack for the 5FU for the next four plus days... I said, "A fanny pack, "REALLY""...they said, nobody will even notice..., "I'm like ya right, only if I go to Disney, wear Bermuda Plaid Shorts, sandals with Black Socks and don't wear any Deodarant"....Geeez...

    Hmmm, they sent me home right after that, Go Figure...

    Thoughts and Prayers,
    John

    WTNW
    "Hooked up with a fanny pack for the 5FU for the next four plus days... I said, "A fanny pack, "REALLY""...they said, nobody will even notice..., "I'm like ya right, only if I go to Disney, wear Bermuda Plaid Shorts, sandals with Black Socks and don't wear any Deodarant"....Geeez..."

    Lmbo!
    Fanny pack? Eek. Talk about What NOT to Wear. I would be asking them if they could put it in a cute handbag. I have plenty big enough that I'd bring in. Even a back pack would be better than a fanny pack. I hate those things.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #13
    Skiffin16 said:

    With You
    You have the power and force of these people with you today....

    First is usually long depending on what is going on...don't forget to take yourself and Jim some snacks/lunch, they usually have drinks and a few snacks there.

    Our first day started around 08:30 and lasted until after 5:00...

    Blood Draw and Testing (don't forget to ask for a hard copy for your reference)
    Emend
    Several Bags of this that and the other (including Cisplatin and Taxotere)

    They use the pump slow at first, each time will get faster as they figure out how much and how fast he can take it.

    Reminds me, sit near the rest room, they give you lasix to help urinate out the chemo...., just an idea of how much you go..I was labeled "The Pee King", on my first day..., LOL.

    Hooked up with a fanny pack for the 5FU for the next four plus days... I said, "A fanny pack, "REALLY""...they said, nobody will even notice..., "I'm like ya right, only if I go to Disney, wear Bermuda Plaid Shorts, sandals with Black Socks and don't wear any Deodarant"....Geeez...

    Hmmm, they sent me home right after that, Go Figure...

    Thoughts and Prayers,
    John

    Arggggggggh, fanny pack! At
    Arggggggggh, fanny pack! At least the jevity people give you a backpack. Its black, not real stylish but anything is better than a fanny pack.

    Debbie
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
    sweetblood22 said:

    WTNW
    "Hooked up with a fanny pack for the 5FU for the next four plus days... I said, "A fanny pack, "REALLY""...they said, nobody will even notice..., "I'm like ya right, only if I go to Disney, wear Bermuda Plaid Shorts, sandals with Black Socks and don't wear any Deodarant"....Geeez..."

    Lmbo!
    Fanny pack? Eek. Talk about What NOT to Wear. I would be asking them if they could put it in a cute handbag. I have plenty big enough that I'd bring in. Even a back pack would be better than a fanny pack. I hate those things.

    LOL
    Tell me about it.....

    If my USMC buds could have seen me.....NOT... I'm sure that would have spurred some OH NOT SO NICE Marine Corps Humor.

    JG
  • Misty35
    Misty35 Member Posts: 24
    #15
    Erbitox
    My hubby is in 3rd week of rads, he did have 1 round of this drug. His side effects were basically like acne with a really bad sun burn. He says it burns quite a bit. He also had the diarhea as well. His reaction to this medicine was bad enough for them to suspend the 2nd round and prescribe antibiotics. His face is getting a little better at the moment, but another round is coming on Wednesday. I can tell you that his oncs told him that if you live in the south east the rashes tend to be more severe and they really don't know why or at least that is what they told us. Good luck to you!
  • ChrisRK
    ChrisRK Member Posts: 2
    #16
    Misty35 said:

    Erbitox
    My hubby is in 3rd week of rads, he did have 1 round of this drug. His side effects were basically like acne with a really bad sun burn. He says it burns quite a bit. He also had the diarhea as well. His reaction to this medicine was bad enough for them to suspend the 2nd round and prescribe antibiotics. His face is getting a little better at the moment, but another round is coming on Wednesday. I can tell you that his oncs told him that if you live in the south east the rashes tend to be more severe and they really don't know why or at least that is what they told us. Good luck to you!

    Erbitux vs Cisplatin
    Hello all. I am brand new to this board. My husband was just diagnosed last week with Stage IV neck cancer. It actually is squamous metastatic with an unknown primary. He has surgery 2 weeks ago to remove lymph nodes, the muscle, and jugular vein on his right side. The Oncologist gave us information on both Cisplatin and Erbitux and said my husband could choose which to do, along with Radiation. Could someone please explain why they chose one over the other if given that choice themselves?
    I look forward to learning a lot about this new journey from everyone here.
    Thank you so much.
    Chris
  • Fern60514
    Fern60514 Member Posts: 8
    #17
    ChrisRK said:

    Erbitux vs Cisplatin
    Hello all. I am brand new to this board. My husband was just diagnosed last week with Stage IV neck cancer. It actually is squamous metastatic with an unknown primary. He has surgery 2 weeks ago to remove lymph nodes, the muscle, and jugular vein on his right side. The Oncologist gave us information on both Cisplatin and Erbitux and said my husband could choose which to do, along with Radiation. Could someone please explain why they chose one over the other if given that choice themselves?
    I look forward to learning a lot about this new journey from everyone here.
    Thank you so much.
    Chris

    Chris - I am fairly new to
    Chris - I am fairly new to this board, my husband was just dx with SCC left tonsil stage !V. He had a radical tonsilectomy and left neck resection at the end of June. We were not offered a choice, we were just told Cisplatin. I didn't know about Erbitux at the time to ask, but when we meet with the Oncologist next, i'm going to ask her. We just started with chemo and rads yesterday and he'll have another chemo at the end of Aug and another in mid Sept. 35 rads total. He is going to a large university hospital. Its interesting to see the different approaches to tx, altho many similarities, there are differences, some have chemo/rads first then surgery, that wasn't presented to us either. I guess have faith in your doctor and do your research. Sometimes with doctors, it doesn't hurt to make them spend a little extra time with you explaining options. etc.

    Good luck to you both.

    Fern
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #18
    Jim & I, Just wanted to let
    Jim & I, Just wanted to let you know that Connie tolerated the Erbitux just fine. She did it with a cocktail of other chemo drugs the 1st week, the 2nd week she did just the Erbitux and it didn't seem to have any negative effects on her at all. Everyone is different but I hope Jim does well with Erbitux cause we all know he needs something to go his way. Hang in there Jim, it's going to get better! We will be praying for you both, Homer & Connie
  • Hondo
    Hondo Member Posts: 6,636 Member
    #19
    ChrisRK said:

    Erbitux vs Cisplatin
    Hello all. I am brand new to this board. My husband was just diagnosed last week with Stage IV neck cancer. It actually is squamous metastatic with an unknown primary. He has surgery 2 weeks ago to remove lymph nodes, the muscle, and jugular vein on his right side. The Oncologist gave us information on both Cisplatin and Erbitux and said my husband could choose which to do, along with Radiation. Could someone please explain why they chose one over the other if given that choice themselves?
    I look forward to learning a lot about this new journey from everyone here.
    Thank you so much.
    Chris

    Hi Chris

    I too am not too sure of the difference between Cisplatin and Erbitux most of the time the doctor will make the choice for you as in my care. As others here already said welcome to the family

    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #20
    ChrisRK said:

    Erbitux vs Cisplatin
    Hello all. I am brand new to this board. My husband was just diagnosed last week with Stage IV neck cancer. It actually is squamous metastatic with an unknown primary. He has surgery 2 weeks ago to remove lymph nodes, the muscle, and jugular vein on his right side. The Oncologist gave us information on both Cisplatin and Erbitux and said my husband could choose which to do, along with Radiation. Could someone please explain why they chose one over the other if given that choice themselves?
    I look forward to learning a lot about this new journey from everyone here.
    Thank you so much.
    Chris

    Welcome Chris
    Welcome to the forum Chris, many good people here and tons of experience and history.

    I too had STGIII SCC Tonsil Cancer (primary) and a single lymphnode (secondary). No surgery other than the tonsils. Nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU), then seven weeks of concurrent. Weekly Carboplatin and daily (35) Amifostine Injections and radiation....

    I can't offer much between Erbitux or Cisplatin..seems to be a mix on here (people havinf one or the other, or swapping from Cisplatin to Erbitux), might have something to do with which other chemo drugs they plan on using, not sure...

    Most of the reading I find usually has Erbitux being used when Cisplatin can no longer be tolerated.

    Thoughts and Prayers,
    John
  • ChrisRK
    ChrisRK Member Posts: 2
    #21
    connieprice1 said:

    Jim & I, Just wanted to let
    Jim & I, Just wanted to let you know that Connie tolerated the Erbitux just fine. She did it with a cocktail of other chemo drugs the 1st week, the 2nd week she did just the Erbitux and it didn't seem to have any negative effects on her at all. Everyone is different but I hope Jim does well with Erbitux cause we all know he needs something to go his way. Hang in there Jim, it's going to get better! We will be praying for you both, Homer & Connie

    Thanks
    Thanks to everyone for your comments. We had our first meeting with the Radiation Oncologist today. My husband, Bill, will need to get his teeth checked then do the radiation planning, etc. Let the journey begin!
    I have learned so much from this board already in the week since I found it. You are all awesome sources of support and information for each other and for us newbies.
    Thank you.
    Chris

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