Cetuximab

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So I got fitted for my radiation mask. Thank God I'm not claustrophobic! I don't how those folks deal with that confinement. Anyway, my radiologist says I'm on the fence in terms of needing chemo. So she gave me information on Cetuximab as clinical trial, vs. regular chemo. She says it's less toxic. Has anyone been on this drug? Can you tell me your experience. Also, I can't feel like a guinea pig of sorts upon hearing this. Makes me think they're pushing the drug when I may not even need it. Would my oncologist have more useful advice than the radiologist? I would love to skip chemo, if I could.

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  • swopoe
    swopoe Member Posts: 492
    edited May 2016 #2
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    Yes, meet with an oncologist

    Yes, meet with an oncologist for a second opinion. Good luck.

  • lornal
    lornal Member Posts: 428
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    Claustrophobia

    I was clastrophobic for cancer #1 in 2007.  It took 5 valium to get into the CT machine for the mask fitting.

    And then, I had meds for every single radiation treatment.

    Now, fast forward to 2014.  Cancer #2 and a total laryngectomy.  Not so claustophobic anymore.  Probably because I breath through my neck, and getting things close to my face don't bother me as much - because I can still breath w/ my mouth shut and my nose plugged.

    I don't have a problem at the dentist anymore either.  Before, I would not let them use the tools that spray water in my mouth.  Always thought I would drown.  Now, no problem.  The only thing now is they have to make sure my head is abover my stomach.

    Lorna 2007 & 2014

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited May 2016 #4
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    erbitux

     

    stevenpepe,

     

    I was given Erbitux (Cetuximab) as were many of us.  It is quite different from the platinum based chemo, but shares the ability to make the cancer cells more receptive to destruction from radiation.

     

    I got a bad case of acne, cracked fingers, eyelash growth and I lost a big toenail.  Tim6003 had an extremely bad reaction to Erbitux.  I asked my chemo onc “why Erbitux” and she said I was a good candidate from my presentation and she knew it had (generally) less side effects.

     

    When you plan your treatment you want to hit the cancer hard.  Cancer is terrible stuff!

     

    Your rad and chemo onc know what they have seen work successfully and want to get it right, but they do leave many of the critical decisions up to you.  Time to get smart (we all had too).

     

    I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads, Erbitux) and 4 plus years post life is good and so are my taste buds.

     

    Good luck,

     

    Matt

     

  • DarcyS
    DarcyS Member Posts: 81 Member
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    Cetuximab

    My husband had 3 treatments of Cetuximab along with Taxol and Cisplatin for 6 weeks before starting radiation.  He, too, had the acne rash but otherwise had few if any side effects.  He had Taxol, 5fu and hydrea during radiation for 10 weeks, 50 in patient rad sessions. His doctors did hit it hard and 4 years later we are so happy they did.  His diagnosis:  SSC of the piriform sinus with 2 lymph nodes affected, stage 4

  • MrsBD
    MrsBD Member Posts: 617 Member
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    Cetuximab

    Definitely talk to a medical oncologist rather than the radiation oncologist. Cetuximab is no longer considered experimental. It prevents the cancer cells from dividing and also makes the radiation treatments more effective. Because I have kidney disease and the platinum-based chemo is more toxic, my doctor thought Cetuximab would be a better choice. In addition to 33 sessions of IMRT, I had 8 weekly infusions of Cetuximab.  The acne-like rash was controlled by antibiotics and lotions. Radiation side effects were more of a problem. Today it has been 19 months since my last treatment, I'm back to normal, and best of all, there is no evidence of cancer. I'm so glad you found this site before your treatment. You'll find people with great advice and lots of support.

  • jtl
    jtl Member Posts: 456
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    Erbitux

    Good stuff.  I am almost 5 years post treatment and no problems.  I was one of the very early Erbitux patients, so much so that my medical oncologist had to do some research.  I believe it was originally patented for cancer of the uterus.  Anyway it has minimal side effects for most people and the ones it has ie acne is very treatable.  I wanted to avoid things like potential liver, kidney and hearing issues.  Good luck.

  • stevenpepe
    stevenpepe Member Posts: 234
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    I have decided to participate

    I have decided to participate in the Cetuximab trial. Chemo doc said my cancer is gone and the one lymph node affected was contained well enough to avoid standard chemo. The trial is randomized so I have a 50% chance of getting the drug. Otherwise, radiation alone is the preferred treatment.

  • oldvampswyfe
    oldvampswyfe Member Posts: 10
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    GOOD for you

    We argued with Oldvamps chemo doc.. he said that the platnum drugs were the gold standard vrs the targeted and he told us to find a new team if we weren't willing to go his route.  there are better methods and its all a great experiment.. good luck.. we both felt that Cet was the best route for us, but no one listened..and time was ticking for us.. he had metastatic cancer in 2 nodes..and the chemo doc forced us into cisplat..  keep your head on straight and know you have people behind you.

  • stevenpepe
    stevenpepe Member Posts: 234
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    I turned down the study today

    I turned down the study today to move forward with treatment. Participating would push it back another 2 weeks. Research is important, but my health is more important and 2 weeks is like an eternity right now.

     

    Good news is a couple of doctors agree I am low risk for reoccurrence, which makes me happy. I'm ready for the fryer.

  • caffinated1
    caffinated1 Member Posts: 32
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    When I went through Rad treatments and chemo all i could think about was how soon could i get back to work and other petty things. The best sugestion I can give is to relax and with whatever route you go with treatment, follow their advice.

    Stay stong. 

  • Barbaraek
    Barbaraek Member Posts: 626
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    Steven

    I'll be cheering for you as you go through your rads. You already have received lots of advice...be sure to ask questions as they come up - there is bound to be someone here who has walked that road. It's also ok to vent here...everyone needs a safe place.

    As for the study...I think erbitux is becoming more common and accepted thanks to some pioneers who do participate in clinical trials. My husband was given Cisplatin and it was a hard journey. BUt everyone has to make the best decision for their unique situation...so if you wanted to get started right away, then that was the right choice for you. Best of luck,

    Barb K

  • ocmark
    ocmark Member Posts: 26
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    I turned down the study today

    I turned down the study today to move forward with treatment. Participating would push it back another 2 weeks. Research is important, but my health is more important and 2 weeks is like an eternity right now.

     

    Good news is a couple of doctors agree I am low risk for reoccurrence, which makes me happy. I'm ready for the fryer.

    Cetuximab

    Hi Steven

    I went with the Cetuximab and feel very good about the decision. Dry, cracking skin on my hands and feet were the worst physical effects, so keep the skin lotion handy. One note, I had a problem with elevated potassium. A too high potassium level can be deadly and mine got right up there. This is a side effect of the cetuximab, so mention it to your doctors to see if the are checking it. I have only one kidney, so it was determined that cetuximab would be a safer way to go for me.  My treatments ended November 6, 2015 and I had PET and CT scans done in April, which showed no signs of cancer. So, in spite missing a couple radiation treatments, it seems to have worked for now, at least.

  • Nonni1947
    Nonni1947 Member Posts: 8 Member
    edited May 2016 #14
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    Centuximabi I

    Hi Steven,   This is my first post, primarily because I have not found a kindred spirit on this discussion board.  On February 26, I had a cancerous tumor removed from my cheek.  It was not in the parotid gland, but near the duct.  There was no evidence of a primary source  The tumor was sitting on the facial muscle, and was discreet. Three different doctors thought it was a cyst.  The fourth did a  FNB,and then ordered a CAT scan Feb.23,  diagnosed Feb. 25, removed Feb. 26.   Six weeks later I began cetuximab weekly for 6 weeks, while concurrently receiving 30 radiation treatments.   Side effects for Cetuximab: horrendous rash which eventually had to be treated by a dermatologist.  Two weeks afte cetuximab, the rash is resolving.  I am having more difficulty with the side effects of the radiation.  Sore tongue, dry mouth, mucous.  I cannot tolerate the lack of taste, so my diet is protein shakes.  Nevertheless,  I would definitely do the Cetuximab, and the radiation.   Aggressive action is necessary to defeat the beast.  Be strong.

  • stevenpepe
    stevenpepe Member Posts: 234
    edited May 2016 #15
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    Nonni1947 said:

    Centuximabi I

    Hi Steven,   This is my first post, primarily because I have not found a kindred spirit on this discussion board.  On February 26, I had a cancerous tumor removed from my cheek.  It was not in the parotid gland, but near the duct.  There was no evidence of a primary source  The tumor was sitting on the facial muscle, and was discreet. Three different doctors thought it was a cyst.  The fourth did a  FNB,and then ordered a CAT scan Feb.23,  diagnosed Feb. 25, removed Feb. 26.   Six weeks later I began cetuximab weekly for 6 weeks, while concurrently receiving 30 radiation treatments.   Side effects for Cetuximab: horrendous rash which eventually had to be treated by a dermatologist.  Two weeks afte cetuximab, the rash is resolving.  I am having more difficulty with the side effects of the radiation.  Sore tongue, dry mouth, mucous.  I cannot tolerate the lack of taste, so my diet is protein shakes.  Nevertheless,  I would definitely do the Cetuximab, and the radiation.   Aggressive action is necessary to defeat the beast.  Be strong.

    It was only a possible option

    It was only a possible option through a clinical trial. My cancer was stage 1, non aggressive so they didn't think it was a requirement. I turned it down because it would have pushed back my treatments another 2 weeks and I was ready to get this over with.