Has anyone taken cetuximab?

Hello, I'm Mark

I had a tumor removed from the lower ride side of my tonge in June, followed by a neck dissection in July. Now I am about to start chemo and radiation treatments. As I only have one kidey and my numbers arean't that great, my doctors decided that the standard chemo drugs would be too hard on my kidney. Cetuximab was recommended as a much gentler alternative. However, I've been reading on line about a whole list of nasty side effects from this drug (which my doctor never mentioned), so I was wondering if anyone has been given this in conjuction with neck radiation?

Thanks!

 

Mark

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    mark, i never had chemo so i

    mark, i never had chemo so i cannot help but i want to welcome you to our family.  i'm sure others will chime in to help you.  i'm sorry you need to be here and i will pray that the docs find the best and safest tx for you.

    God bless you,

    dj

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    welcome

    Mark,

    welcome to the H&N forum, sorry you are here, but what are you going to do.

    Many of us were given Erbitux (Cetuximab).  For me, it was one loading dose and then seven weekly doses every Friday after radiation.  I developed acne on my upper torso and face, my eyebrows and eyelashes grew longer and thicker and my fingers cracked and at the end I lost one toenail.  I never got sick from it and as bad as it looked, it never itched.

    If you have only one kidney it is a good alternative. Furthermore they will keep you checked out every week to make sure your blood is good in your kidney is functioning properly.

    Good luck,

    Matt

  • MrsBD
    MrsBD Member Posts: 615 Member
    Cetuximab

    Welcome to the group. Due to kidney issues, my doctors decided cetuximab  (Erbitux ) would be a better option for me. The side effects included the acne-like rash on my face and scalp, small cracks on a few fingertips, and long eyelashes. They were not pleasant, but it was all manageable, and we will be here with advice to help you. Erbitux is a newer therapy and has a good success rate. More of the side effects can be attributed to radiation and you can count on the people on this site to help you manage those, too.

  • KB56
    KB56 Member Posts: 318 Member
    Erbitux

    Mark, I had Erbitux and my Dr recommended it primarily because the side effects were much less than other options.   I had bad acne and skin rash but it cleared up before the end of treatment and really wasn't too bad other than the 2nd looks i would get when I was out somewhere.   

    It seemed much less destructive than some of the other chemo options I have seen on this site.    I had Erbitux and 34 radiation treatments and two years out still NED!

     

    Good luck!

    Keith

  • ocmark
    ocmark Member Posts: 26
    KB56 said:

    Erbitux

    Mark, I had Erbitux and my Dr recommended it primarily because the side effects were much less than other options.   I had bad acne and skin rash but it cleared up before the end of treatment and really wasn't too bad other than the 2nd looks i would get when I was out somewhere.   

    It seemed much less destructive than some of the other chemo options I have seen on this site.    I had Erbitux and 34 radiation treatments and two years out still NED!

     

    Good luck!

    Keith

    ERbitux

    Thanks, Keith and all of you who responde so quickly!

    You're comments are very encouraging. I hope my results will be similar. I can live with some acne and cracked skin! I'll let you all know how it went on Wednesday.

    Thanks so much,

    Mark

  • Barbaraek
    Barbaraek Member Posts: 626
    ocmark said:

    ERbitux

    Thanks, Keith and all of you who responde so quickly!

    You're comments are very encouraging. I hope my results will be similar. I can live with some acne and cracked skin! I'll let you all know how it went on Wednesday.

    Thanks so much,

    Mark

    best of Luck

    to you on wednesday Mark. I'm sending all kinds of good vibes your way.

     

    Barbara

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group Mark....

    Just welcome to the site no one wants to need, but it is the bast. Sorry you need to be here. Never had chemo but your doctors will take your kidnet into consideration in yout treatment.

    Bill

  • ocmark
    ocmark Member Posts: 26
    Had my loading dose of cetuximab

    Hi friends,

    I wanted to follow up with you all on my first dose experience. The session with the IV drip went without a hitch. After reading all the possible side effects with this drug, it was still in the back of my mind that I could have a severe reaction or worse. But as it turned out, my fears were unfounded just as your experiences suggested. However, later that evening I started to get a fever. My written instructions were to go directly to the emergency room if there is a fever higher than 100.4. I recorded 100.7, but felt so horrible I took a couple of tylenol, which brought my temp back to normal very quickly. I called my oncology hotline to let them know I was having a problem and got chewed out rather severely for taking something and no going directly to the emergency room. He told me if it spikes again to go directly this time. Of course, just as I was getting ready for bed, I started feeling lousy again and took a temperature of 100.5 this time. So, I went to emergency. $250.00 and 4 hours later, after doing all kinds of blood work and a chest x-ray, they determined that I was having a reaction from the drug, at my insistance, I might add. They wanted to give me a bunch of antibiotics, so I had to suggest that it could just be a reaction to the drug. The doctor responded with "It might be."  So they gave me three more Tylenol and finally sent me home . The next morning I felt pretty good except that I was feeling a little groggy in the head, but that seems to be getting better as I write this.

    Sorry for the blow by blow here, but I'd like to ask what instructions others of you were given for fever. I spent hours in Emergency just to get the same remedy that I got chewed out for. What about you? All things considered, I consider this a positive outcome, I just wish I hadn't had to go to the emergency room.

    All the best,

    Mark

  • Barbaraek
    Barbaraek Member Posts: 626
    ocmark said:

    Had my loading dose of cetuximab

    Hi friends,

    I wanted to follow up with you all on my first dose experience. The session with the IV drip went without a hitch. After reading all the possible side effects with this drug, it was still in the back of my mind that I could have a severe reaction or worse. But as it turned out, my fears were unfounded just as your experiences suggested. However, later that evening I started to get a fever. My written instructions were to go directly to the emergency room if there is a fever higher than 100.4. I recorded 100.7, but felt so horrible I took a couple of tylenol, which brought my temp back to normal very quickly. I called my oncology hotline to let them know I was having a problem and got chewed out rather severely for taking something and no going directly to the emergency room. He told me if it spikes again to go directly this time. Of course, just as I was getting ready for bed, I started feeling lousy again and took a temperature of 100.5 this time. So, I went to emergency. $250.00 and 4 hours later, after doing all kinds of blood work and a chest x-ray, they determined that I was having a reaction from the drug, at my insistance, I might add. They wanted to give me a bunch of antibiotics, so I had to suggest that it could just be a reaction to the drug. The doctor responded with "It might be."  So they gave me three more Tylenol and finally sent me home . The next morning I felt pretty good except that I was feeling a little groggy in the head, but that seems to be getting better as I write this.

    Sorry for the blow by blow here, but I'd like to ask what instructions others of you were given for fever. I spent hours in Emergency just to get the same remedy that I got chewed out for. What about you? All things considered, I consider this a positive outcome, I just wish I hadn't had to go to the emergency room.

    All the best,

    Mark

    Any fever following chemo

    is not treated lightly. The chemo lowers your immune system and leaves you vulnerable to infection. That's why they suggested the antibiotics. On two occasions my husband went in with fever and the blood draw showed extremely low white blood cell count with very few neutrophils (neutropenia). Once AFTER he had the Neulasta shot! They admitted him, put him on IV antibiotics, and brought the biggest noisiest damn air filter in the hospital to his room. Masks and Purell hand cleanser for all. perhaps they were overly cautious, but fever caused by neutropenia is not to be messed with.

    Barbara

  • Killer-T
    Killer-T Member Posts: 3
    Barbaraek said:

    Any fever following chemo

    is not treated lightly. The chemo lowers your immune system and leaves you vulnerable to infection. That's why they suggested the antibiotics. On two occasions my husband went in with fever and the blood draw showed extremely low white blood cell count with very few neutrophils (neutropenia). Once AFTER he had the Neulasta shot! They admitted him, put him on IV antibiotics, and brought the biggest noisiest damn air filter in the hospital to his room. Masks and Purell hand cleanser for all. perhaps they were overly cautious, but fever caused by neutropenia is not to be messed with.

    Barbara

    Cetuximab

    This substance is NOT chemo. It is a monoclonal antibody. Not a poison. It works by supressing your body's epithelial growth factor which is something that cancer cells depend on to grow, much more than normal cells do.

    Sorry that you have a reaction to it. Despite that I would suggest that the fever might be a good sign that your body is working to get rid of the cancer. When I started taking it I could see the tumor was starting to shrink in only 4 days! It worked great, with only a slight reddness on my nose and eventually an overgrowth of my cuticle on one big toe.

    This stuff is ridiculously over-priced. My main complaint with it is that it only worked for about 3 months (for me). Apparently the cancer cells change constantly and they morphed into a mode where the new ones were resistant to it and so it started growing again.

    That is when my sequencing results finally came back and I started on Immunotherapy, which worked (for me). I keep saying "for me" because everyone is different and results, side effects and how you feel in general can't be predicted from what you read on the Internet. Everyone is TRULY different! This is why sequencing is SO important.

  • ocmark
    ocmark Member Posts: 26
    Barbaraek said:

    Any fever following chemo

    is not treated lightly. The chemo lowers your immune system and leaves you vulnerable to infection. That's why they suggested the antibiotics. On two occasions my husband went in with fever and the blood draw showed extremely low white blood cell count with very few neutrophils (neutropenia). Once AFTER he had the Neulasta shot! They admitted him, put him on IV antibiotics, and brought the biggest noisiest damn air filter in the hospital to his room. Masks and Purell hand cleanser for all. perhaps they were overly cautious, but fever caused by neutropenia is not to be messed with.

    Barbara

    Fever

    Thanks Barbara for your advice. I'm stil a little unsure if the drug I'm taking (cetuximab) suppresses the immune system like chemotherapy, or not. My impression is that it does not, but I need to get verification on that.

  • ocmark
    ocmark Member Posts: 26
    Killer-T said:

    Cetuximab

    This substance is NOT chemo. It is a monoclonal antibody. Not a poison. It works by supressing your body's epithelial growth factor which is something that cancer cells depend on to grow, much more than normal cells do.

    Sorry that you have a reaction to it. Despite that I would suggest that the fever might be a good sign that your body is working to get rid of the cancer. When I started taking it I could see the tumor was starting to shrink in only 4 days! It worked great, with only a slight reddness on my nose and eventually an overgrowth of my cuticle on one big toe.

    This stuff is ridiculously over-priced. My main complaint with it is that it only worked for about 3 months (for me). Apparently the cancer cells change constantly and they morphed into a mode where the new ones were resistant to it and so it started growing again.

    That is when my sequencing results finally came back and I started on Immunotherapy, which worked (for me). I keep saying "for me" because everyone is different and results, side effects and how you feel in general can't be predicted from what you read on the Internet. Everyone is TRULY different! This is why sequencing is SO important.

    Immunotherapy?

    Hi Killer-T

    Thanks for your comments. I'm sorry to hear Erbitux wasn't the final solution for you. What is immunotherapy? Is that different from standard chemo drugs? I keep hearing how expensive Erbitux is, fortunatley it is covered entirely through my Kaiser plan (not that I'm necessarily recommending Kaiser). I guess I shouldn't complain about the cost of the emergency room.

    In my case after two surgeries, there is no sign of cancer, so all this is just to prevent a re-occurance, so there is no way to tell, at the moment at least, if this is working or not.

     

    Are you free of cancer at this time?

     

    Mark