Study for SCC to test Chemo with Cetuximab

Crazymom
Crazymom Member Posts: 339 Member
edited December 2011 in Head and Neck Cancer #1
They want me to participate in a study the has standard Chemo treatment, but adds Cetuximab, which was developed by MD Anderson. They believe it will increase my chances of not getting cancer again in the future and are hoping this study will prove that. I just want to hurry up and get started. This kind of scares me, but they really want me to do it. They are not making me do it, but feel it is very promising. Have any of you guys done studies? I have T1 tonsil tumor and N2 lymph node tumors (3 tumors). It has not spread to the right side. I think it is HPV and this study if for squamous cell carcinoma. They seem to think I am lucky that I qualify and don't understand why I am hesitant to join in. What are your thoughts. I am at MD Anderson and just want to get started. If I choose this then the Chemo will not start next week, but the next. The tumor does not seem to have grown the last couple of weeks. The lymph node was 2.7cm three weeks ago and is now 2.6 cm.

Ann

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    What are you waiting on?
    There already is preliminary data that looks like this is the way to go. I just finished induction chemotherapy and had my pre-radiation PET scan. Induction in my case was carboplatin/taxotere every three weeks for four doses, and cetuximab (which is not a brand new drug. It is also called Erbitux) every week. My PET scan has completely cleared. Completely cleared....

    This dramatically simplifies my IMRT and improves my chances of surviving this ordeal. You have nothing to lose.

    But that's just my opinion:)
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Crazymom
    Look at it this way it might be something that can help a lot of others later down the line with what they find on you. If there are no dangers in it then all it can do is help.

    Wishing you well in your decision, what ever one you make will be the right one.

    Hondo
  • Crazymom
    Crazymom Member Posts: 339 Member
    #4
    longtermsurvivor said:

    What are you waiting on?
    There already is preliminary data that looks like this is the way to go. I just finished induction chemotherapy and had my pre-radiation PET scan. Induction in my case was carboplatin/taxotere every three weeks for four doses, and cetuximab (which is not a brand new drug. It is also called Erbitux) every week. My PET scan has completely cleared. Completely cleared....

    This dramatically simplifies my IMRT and improves my chances of surviving this ordeal. You have nothing to lose.

    But that's just my opinion:)

    Thanks, I think you are
    Thanks, I think you are right. They did not get the biopsy from the tonsil back until yesterday. So they could not start until they got that because they did not know if it was HPV. I guess they do now.

    Glad you are doing well. Ann
  • RogerRN43
    RogerRN43 Member Posts: 185
    #5
    Giving yourself the best shot for longterm
    I have read about others getting Cetuximab and if this is offered to you, then I guess your decision is if the short-term side effects are worth the longterm insurance of having it cured. On the flipside, if it is HPV cause, the scientific community are rethinking that HPV HNC needs less aggressive treatment, some centers do only 2 Cisplatin and 35 rads, as it responds very well to less treatment, and has a favourable prognosis.

    Tough call. Personally, I would want the best shot at being cured so I would rather have everything thrown at it chemo-wise and possibly suffer the short-term consequences of side effects. But as you know, the mainstay of treatment is radiation so it's the main bank.

    All the best in your decision.
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #6
    Hi CrazyMom, I just wanted
    Hi CrazyMom, I just wanted to ask you if your chemo oncologists was Dr. Papa. (Dr. Papadimitropoulou) My wife, Connie was in a clinical trial at MD Anderson which was induction chemo including cetuximab. She did the induction chemo including cetuximab the 1st week, then just cetuximab alone the 2nd week then she got the 3rd week off. This chemo process was repeated 3 times for a total of 9 weeks. Chemo does make you nauseated somewhat so you will be prescribed anti-nausea medication for this, just take the medicine whether you feel nauseated or not. When she did just cetuximab alone though she never got sick, it was a piece of cake. Cetuximab only targets the cancerous cells and is a really good drug. Connie loves Dr. Papa and she is a very caring doctor. If you ever have any questions or fears I am sure Connie would talk to you over the phone or in person about it. The 1st chemo treatment was scary for Connie because she didn't know what to expect. Wishing you the best, Homer & Connie
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Standard Chemo Treatment
    What do they consider the standard chemo treatment plan? You mentioned that the Cetuximab/Erbitux would be in addition...under the premise of it being in addition I don't see that it wouldn't have anything but value.

    If it were in lieu of other chemo drugs, then I would have to need more investigation/information.

    Also, you say "they", who is "they", your Cancer Treatment Team, or someone else? If it's the team that you have been using and "they" suggest it, and if you trust them and have faith in them, I'd go with their decision...if not, discuss it with your regular team.

    Best Choices,
    John
  • jtl
    jtl Member Posts: 456
    #8
    Skiffin16 said:

    Standard Chemo Treatment
    What do they consider the standard chemo treatment plan? You mentioned that the Cetuximab/Erbitux would be in addition...under the premise of it being in addition I don't see that it wouldn't have anything but value.

    If it were in lieu of other chemo drugs, then I would have to need more investigation/information.

    Also, you say "they", who is "they", your Cancer Treatment Team, or someone else? If it's the team that you have been using and "they" suggest it, and if you trust them and have faith in them, I'd go with their decision...if not, discuss it with your regular team.

    Best Choices,
    John

    John
    I think she is referring to the "new" approach of combining Cetuximab with Cisplatin to get improved results based on at least one study that Pat mentioned in another post.
  • NJR
    NJR Member Posts: 82
    #9
    Good for you
    I would agree that you are fortunate. The study has been going on for the past couple of years and the preliminary conclusions were so promising that the FDA approved it for use in Head and Neck cancer just recently even though they have been using it for quite some time. It is the first drug created that has actually increased the median lifespan in our kind of cancer in over 30 years. Good for you!
  • trixiedixie
    trixiedixie Member Posts: 10
    #10
    Cetuximab
    Not sure if this will help with your decision, but I had stage 3 tonsil cancer with 3 lymph nodes involved and I was given Cetuximab rather than Cistoplatin to prevent further hearing loss. With the cetuximab, I only had to have 5 weeks of radiation instead of the 7 weeks I would have had with cistoplatin. My doctor said it was because cetuximab interacts differently with radiation. They can hit you a little harder with the rads for less time. The lymph node tumours went down so fast I could almost see them shrinking.I haven't experienced any other types of chemo but I have to say, the side affects from cetuximab seemed a lot less to deal with. No nausea at all, no hair loss, except for a little band at the base of my neck from the rads. The face rash was pretty ugly for a while but it has cleared up. I feel fortunate that I was given this treatment over the conventional one. Oh, I just had my first C-scan and PET-scans post treatment and everything is all clear! I wish you all the best and a speedy recovery.
  • Fire34
    Fire34 Member Posts: 365
    #11
    18 250 mg treatments here
    Ann
    I was in a clinical trial at the U of Chciago involving Erbitux. My trial started with induction chemo of Carboplatin, Taxol & Erbitux.The indcution lasted 8 weeks The Erbitux was weekly for 18 weeks. Stg IVa HPV+ unknown primary
    I then underwent concurrent chemo/rads for 5 alternating weeks (week on/off)The rads were twice daily for a total of 49 treatments.With 120 hrs of 5FU, twice daily Hydroxyurea and the Erbitux.
    I also was not coherced in anyway of being in the trial, and was told my treatment would be the norm with the cisplatin regimine.
    I am currently two years post now and all is as well as can be expected. As bad as my treatment was my attitude was " if you think you have it bad look at the person next to you"
    What does the rest of the trial consist of? I believe I would go for it though looking like a tennager again might be fun -:)
    Wishe & prayers on whichever decsision you make
    Dave
  • Crazymom
    Crazymom Member Posts: 339 Member
    #12
    Fire34 said:

    18 250 mg treatments here
    Ann
    I was in a clinical trial at the U of Chciago involving Erbitux. My trial started with induction chemo of Carboplatin, Taxol & Erbitux.The indcution lasted 8 weeks The Erbitux was weekly for 18 weeks. Stg IVa HPV+ unknown primary
    I then underwent concurrent chemo/rads for 5 alternating weeks (week on/off)The rads were twice daily for a total of 49 treatments.With 120 hrs of 5FU, twice daily Hydroxyurea and the Erbitux.
    I also was not coherced in anyway of being in the trial, and was told my treatment would be the norm with the cisplatin regimine.
    I am currently two years post now and all is as well as can be expected. As bad as my treatment was my attitude was " if you think you have it bad look at the person next to you"
    What does the rest of the trial consist of? I believe I would go for it though looking like a tennager again might be fun -:)
    Wishe & prayers on whichever decsision you make
    Dave

    cetuximab
    I started this week. I am very happy with my choice to do it. I am getting cetuximab,carboplatin, paclitaxel by vein once a week for 6 weeks. I am MD Anderson and feeling really confident. THanks for posting. So far I am not sick at my stomach and have a slightly red face. i am just glad it has started.

    Thanks for commenting.

    Ann
  • Crazymom
    Crazymom Member Posts: 339 Member
    #13
    Fire34 said:

    18 250 mg treatments here
    Ann
    I was in a clinical trial at the U of Chciago involving Erbitux. My trial started with induction chemo of Carboplatin, Taxol & Erbitux.The indcution lasted 8 weeks The Erbitux was weekly for 18 weeks. Stg IVa HPV+ unknown primary
    I then underwent concurrent chemo/rads for 5 alternating weeks (week on/off)The rads were twice daily for a total of 49 treatments.With 120 hrs of 5FU, twice daily Hydroxyurea and the Erbitux.
    I also was not coherced in anyway of being in the trial, and was told my treatment would be the norm with the cisplatin regimine.
    I am currently two years post now and all is as well as can be expected. As bad as my treatment was my attitude was " if you think you have it bad look at the person next to you"
    What does the rest of the trial consist of? I believe I would go for it though looking like a tennager again might be fun -:)
    Wishe & prayers on whichever decsision you make
    Dave

    cetuximab
    oops
  • Crazymom
    Crazymom Member Posts: 339 Member
    #14
    trixiedixie said:

    Cetuximab
    Not sure if this will help with your decision, but I had stage 3 tonsil cancer with 3 lymph nodes involved and I was given Cetuximab rather than Cistoplatin to prevent further hearing loss. With the cetuximab, I only had to have 5 weeks of radiation instead of the 7 weeks I would have had with cistoplatin. My doctor said it was because cetuximab interacts differently with radiation. They can hit you a little harder with the rads for less time. The lymph node tumours went down so fast I could almost see them shrinking.I haven't experienced any other types of chemo but I have to say, the side affects from cetuximab seemed a lot less to deal with. No nausea at all, no hair loss, except for a little band at the base of my neck from the rads. The face rash was pretty ugly for a while but it has cleared up. I feel fortunate that I was given this treatment over the conventional one. Oh, I just had my first C-scan and PET-scans post treatment and everything is all clear! I wish you all the best and a speedy recovery.

    cetuximab
    Thanks for comment. I just started and all is going well.
  • NW DINO
    NW DINO Member Posts: 31
    #15
    Crazymom said:

    cetuximab
    oops

    Erbitux & Cisplatin combo
    I also had the combination but was not intentional. Dx with BOT SCC HPV +16 September 2010. Have a history of hearing loss with tinnitus. After one chemo treatment of Cisplatin my tinnitus intensified quite a bit so my doctor changed to Erbitux for the remaining 5 treatments. Did have 35 concurrent radiation treatments with the last being December 15th, 2010. My neck area did redden up with a scaly skin reaction. It has amazingly cleared up like it never happened - other than the fact I no longer have to shave my neck area! I never had to deal with nausea to much. Had a feeding tube (which I needed for sure) but was able to eat scrambled eggs just 2 weeks after my last radiation. Everyone is different but I had the feeding tube removed just one month later. Just wanted to let you know that you will have some tough days ahead but stay positive & know that you will win the battle! I have 99% of my taste buds back & can eat anything now! Focusing on my diet & exercise now more than ever. You have my vote that you made the right choice in the trial therapy. Take it easy & enjoy the holidays with your family!!
  • Crazymom
    Crazymom Member Posts: 339 Member
    #16
    connieprice1 said:

    Hi CrazyMom, I just wanted
    Hi CrazyMom, I just wanted to ask you if your chemo oncologists was Dr. Papa. (Dr. Papadimitropoulou) My wife, Connie was in a clinical trial at MD Anderson which was induction chemo including cetuximab. She did the induction chemo including cetuximab the 1st week, then just cetuximab alone the 2nd week then she got the 3rd week off. This chemo process was repeated 3 times for a total of 9 weeks. Chemo does make you nauseated somewhat so you will be prescribed anti-nausea medication for this, just take the medicine whether you feel nauseated or not. When she did just cetuximab alone though she never got sick, it was a piece of cake. Cetuximab only targets the cancerous cells and is a really good drug. Connie loves Dr. Papa and she is a very caring doctor. If you ever have any questions or fears I am sure Connie would talk to you over the phone or in person about it. The 1st chemo treatment was scary for Connie because she didn't know what to expect. Wishing you the best, Homer & Connie

    Oncologist
    my doctor is Dr Glisson. Everything is going well. I am not sick at my stomach yet, but am taking anti nausea. I got real red red the first day, but it has subsided a bit. I am getting Cetuximab, carboplatin and paclitaxel once a week for 6 weeks then radiation.

    I am almost worried that I am not sicker. I have heard it takes a few days for the cetuximab to get your skin all red etc.

    Ann
  • Crazymom
    Crazymom Member Posts: 339 Member
    #17
    Skiffin16 said:

    Standard Chemo Treatment
    What do they consider the standard chemo treatment plan? You mentioned that the Cetuximab/Erbitux would be in addition...under the premise of it being in addition I don't see that it wouldn't have anything but value.

    If it were in lieu of other chemo drugs, then I would have to need more investigation/information.

    Also, you say "they", who is "they", your Cancer Treatment Team, or someone else? If it's the team that you have been using and "they" suggest it, and if you trust them and have faith in them, I'd go with their decision...if not, discuss it with your regular team.

    Best Choices,
    John

    Standard Chemo
    They is MD Anderson. I am getting Cetuximab, carboplatin and paclitaxel for 6 weeks as part of a study where they are comparing two different ways to use cetuximab. I got the six week plan with 6 weeks of three above/ then 6 weeks radiation. The other plan has the participants go for 9 weeks.

    Thanks...so far all is going well.

    Ann
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #18
    Crazymom said:

    Oncologist
    my doctor is Dr Glisson. Everything is going well. I am not sick at my stomach yet, but am taking anti nausea. I got real red red the first day, but it has subsided a bit. I am getting Cetuximab, carboplatin and paclitaxel once a week for 6 weeks then radiation.

    I am almost worried that I am not sicker. I have heard it takes a few days for the cetuximab to get your skin all red etc.

    Ann

    Chemo Flush
    I would always get flushed for a few days when I had the larger doses also.

    If you aren't feeling sick, then the meds are working or your jst a lucky one...

    I also never got sick, and presumed I'd be one of those old gray washed out people being treated for cancer...wasting away.

    I didn't realize that I was thinking in a mind set of 50 years ago...technology is awesome these days.

    Best,
    John

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