Erbitux

Hi everyone,

I have just joined recently. I have stage IV SCC (Supragalottic). T2N2M0. I've been hoarse since September and hoping my voice comes back once the tumor begins to shrink.

I am preparing for treatment with 35 rads beginning the first week of January. My oncologist wants to implement cisplatin or erbitux in combination.

I have heard so many horror stories about chemo and after much research what I read made for a logical argument about not doing chemo. The risk reward factor. Only about 5-8% increase in cure and loss of all good and bad cells. Just can't wrap my head around destroying your immune system to fight cancer. I have to give an answer soon. So, would you do it again if you could choose?

 

Thanks

Raddude

Comments

  • jcortney
    jcortney Member Posts: 503
    I went for both

    Had the full treatment with cisplatin and 5FU and after erbitux and Rads.  What made me choose the whole route, after talking to best minds I could find, what this would give me the BEST chance of beating the beast.  Chemo was ugly, but rads were worse.  I was lucky and tolerated chemo very well and was rarely sick.  I will tell you this, before starting rads, the chemo had shrunk all my tumors to the point of not being able to be found.  This made the Onc Radiologist very pleased.

    Everyone has to decide for themselves what direction to take.  If you are comfortable with your team, take their best advice.

    Good Luck,

    Joe

  • Barbaraek
    Barbaraek Member Posts: 626
    Chemoradiation

    My husband had 35 radiation treatments with 2 concurrent Cisplatin (100) at weeks 1 and 4. After that he did one round of Cisplatin + 5FU, but couldn't tolerate any more. He has very severe side effects from both the chemo and the radiation.

    Would we do it again? absolutely, because there is no evidence of disease after the treatment for us. The Cisplatin affected his hearing, but it shrunk and killed those cancer cells. It is also a radiation enhancer.

    If we did anything different, I would have voted not to do the adjuvant with Cisplatin and 5FU, but that was his call to make...and he felt he had to try. He didn't want to be asking what if?

    Each person will have to make their own best choice. Good luck with making YOUR best choice, and prayers for your recovery.

    Barbara

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    decisions

    Raddude,

    Cisplatin and Erbitux have vastly different side effects.

    I have been known to follow the advice of experts.

    Matt

  • josh r.
    josh r. Member Posts: 264 Member
    chemo-rad

    Hi Raddude,

    When facing"The Monster" there are decisions to make and like Matt I listened to the professionals. In July of 1991 my Dr. suggestioed a relatively new chemorad simultaneous treatment to defeat my stage iv scc that was surrounding my vocal cords. In todays parlence I said "I am all in Dr." I am very blessed to have cellebrated my 24 year of final treatments on this past November 22nd. Thank YOU Lord, med-team, wife, family and friends.

    Was it easy? No, but it was worth it. I finished fifteen more years of public school teaching and use my voice without a problem in my second career with the public even though some of my customers think I did the "voice over" for Brando's "Godfather's"role. I have no problem with that.

    Good luck on deciding if this is, "A decision you can't refuse!" josh r.

     

  • Amelia69
    Amelia69 Member Posts: 5
    Hi Raddude,
    I can't really

    Hi Raddude,

    I can't really answer your question but my husband also opted for Erbitux and rads without Cisplatin. He's a professional musician and the risk of hearing loss was too catastrophic in terms of there being a chance of him not being able to work again. We're half way through treatment now and although the Erbitux has it's own interesting side effects, he is not getting any 'chemo' side effects. His medical team seem very confident that they're going to have a good chance of beating this with Erbitux and Rads.

    Whatever you decide, I'll be thinking of you.

  • jtl
    jtl Member Posts: 456
    Erbitux for me

    I am the type of person who is very proactive with my health and medical treatments.  When my medical onc told my that the treatment plan for my scc was a cisplatin.  I immediately started to research.  Everything I read suggested that this regimend had many potential side effects, some of which may not show up for many years and some permanent.  Emphasize "potential" because not everyone will have major or permanent side effects, but the risk for me was concerning especially hearing loss and tinnitus.  I already have moderate to severe hearing loss.  

    I searched for alternatives and looked at current drug trials and found out that Erbitux had recently been approved by the FDA for treating scchn.  I asked my med onc what he thought and he consulted with others in his group and agreed that Erbitux would be an very good alternative, especially considering my hearing issues.  To this day Erbitux does not get nearly the attention of the cisplatins probably because carboplatin for treating h&n cancer has been in use for over 25 years.  With that kind of history it is difficult for a med onc to push something relatively new.  

    The side affects for me were minor.  I did have the typical acne but it was easily treated and short lived. Since Erbitux is new there is not much on which to judge success but so far so good for me.

    If I had to go through this again I would make the same choices except I would opt for proton therapy instead of TomoTherapy (IMRT).  However at the time IMRT was  supposedly the best since proton therapy was not yet available.  Proton therapy is very precise, even more so than IMRT which makes it very useful for recurrances where additional x-ray radiation may not be adviseable.  Problem is that proton therapy is VERY expensive, the cost of the equipment and the dedicated building is about $150 million.  There are not many places offering this treatment but Mayo Clinic does.  They found that due to the costs most insurance companies would not cover the treatment.  Now I believe they have agreed to only charge what they would for IMRT. A friend of mine was going to do this but the waiting list was 2 months out and he did not want to wait.  Best of Luck and Merry Christmas to all.

    John

  • hwt
    hwt Member Posts: 2,328 Member
    jtl said:

    Erbitux for me

    I am the type of person who is very proactive with my health and medical treatments.  When my medical onc told my that the treatment plan for my scc was a cisplatin.  I immediately started to research.  Everything I read suggested that this regimend had many potential side effects, some of which may not show up for many years and some permanent.  Emphasize "potential" because not everyone will have major or permanent side effects, but the risk for me was concerning especially hearing loss and tinnitus.  I already have moderate to severe hearing loss.  

    I searched for alternatives and looked at current drug trials and found out that Erbitux had recently been approved by the FDA for treating scchn.  I asked my med onc what he thought and he consulted with others in his group and agreed that Erbitux would be an very good alternative, especially considering my hearing issues.  To this day Erbitux does not get nearly the attention of the cisplatins probably because carboplatin for treating h&n cancer has been in use for over 25 years.  With that kind of history it is difficult for a med onc to push something relatively new.  

    The side affects for me were minor.  I did have the typical acne but it was easily treated and short lived. Since Erbitux is new there is not much on which to judge success but so far so good for me.

    If I had to go through this again I would make the same choices except I would opt for proton therapy instead of TomoTherapy (IMRT).  However at the time IMRT was  supposedly the best since proton therapy was not yet available.  Proton therapy is very precise, even more so than IMRT which makes it very useful for recurrances where additional x-ray radiation may not be adviseable.  Problem is that proton therapy is VERY expensive, the cost of the equipment and the dedicated building is about $150 million.  There are not many places offering this treatment but Mayo Clinic does.  They found that due to the costs most insurance companies would not cover the treatment.  Now I believe they have agreed to only charge what they would for IMRT. A friend of mine was going to do this but the waiting list was 2 months out and he did not want to wait.  Best of Luck and Merry Christmas to all.

    John

    Had both

    Cisplatin in 2011 was very hard on me and some cells got by it. With recurrances I did Erbitux/Taxol, 2014, clean since much easier on me than the Cisplatan.

  • MrsBD
    MrsBD Member Posts: 617 Member
    Weighing In On Erbitux

    When I first found out my diagnosis, my computer went on overdrive. Before meeting with the oncologists,  I had decided radiation and Erbitux would be my choice if there was one. It is my understanding that chemo enhances the effects of radiation and the odds of beating the disease. With H&N cancer, it is never an easy course of treatment. Erbitux is a monoclonal antibody that harnesses the power of your immune system to fight the cancer. It has fewer bad side effects than the platinum based drugs. To me, the side effects of Erbitux and the success rate were worth the risks. It has been 14 months since the last treatment and my doctors are very optimistic. I would do it again.

  • swopoe
    swopoe Member Posts: 492
    Chemo

    My husband just started rads and chemo (cisplatin...40 mg once a week for 6 weeks) last week for oral tongue cancer. We read the same stats you did about chemo and had similar concerns, but ultimately, we decided to do the chemo. Reason being is that chemo is a radiation enhancer, as others said. Also, the first doses of chemo have the biggest effects on the cancer. So even if your body can't tolerate the later doses, the first few doses are the most important ones. So, we trusted our docs (we are in Houston, using some docs at MD Anderson) and went with chemo. In our case, they recommended cisplatin as described above. My husband has only had one dose so far, but no major side effects other than a bit of heartburn and some pesky hiccups. So, so far so good. Ultimately, the decision is up to you. Get opinions, do your research, and make a decision with no regrets. 

    Nadine

  • the_wife
    the_wife Member Posts: 184
    chemo

    I know there is a clinical trial going on now with reduced dosages of chemo and radiation. If it were me, I'd seriously check into that and see if you qualify. 

    We were offered two choices - either robotic surgery with reconstruction, radiation and probably chemo due to the later stage. Or chemoradiation (IMRT)using weekly cisplatin for 7 weeks. We didn't research and just trusted our team to give us the best possible advice and chance of fighting the cancer. 

    This might not be a good comparision, but I had a friend with breast cancer who resisted conventional treatment and didn't want to do chemo in particular. I think she was afraid of losing her hair. Her tumor grew until it was almost the size of her breast. She is now stage 4 and being treated with oral meds. 

    My husband wanted a sure thing so we went with chemoradiation and are keeping surgery as an option if that doesn't clear the nodes. Sure, cisplatin is probably old and outdated. But they know that it works from proven studies. Studies much like the ones going on now, but are not completed or haven't become the gold standard yet. 

    Yes, the treatment can be rough, no doubt about it. After the first chemo, my husband had a strong reaction to it and almost quit right there. But he didn't, thank goodness. Not everyone has that bad of a time. It all depends on your body chemistry, not how big and tough you are. But this is the hardest thing we've ever done - no doubt about it. You gotta be strong mentally to fight this fight. Others before you have done it and I just read of josh celebrating 24 years - wow! So I won't sugar coat it, the side effects can be severe in some cases, but according to what I see here, most of the time you do get to live a fairly normal life....translate you get to LIVE. The only word I focused on was "curable." But as I see it, you gotta be a fighter and come out fighting with everything you've got. You've got to hit it hard from the beginning - that's your only chance of beating it. Just my opinion for what's it worth.

     

  • Raddude
    Raddude Member Posts: 84
    Thank you all

    I have decided to move forward with the Erbitux. The information provided by everyone helped me to make that choice.

    I begin on 1/4/16, and like most said I think I should throw the kitchen sink at this beast and do my best to terminate it.

     

  • the_wife
    the_wife Member Posts: 184
    Full steam ahead

    Sounds good. Best of luck to you. Please keep us posted, Raddude!

  • Barbaraek
    Barbaraek Member Posts: 626
    Good luck Raddude!

    It's imporatnt that you are comfortable with your decision...I'm glad you put on your boxing gloves. Please keep us updated so we can be a cheering section for you.

    Blessings,

    Barbara

  • jtl
    jtl Member Posts: 456
    Raddude said:

    Thank you all

    I have decided to move forward with the Erbitux. The information provided by everyone helped me to make that choice.

    I begin on 1/4/16, and like most said I think I should throw the kitchen sink at this beast and do my best to terminate it.

     

    Good Choice

    Admittedly, I am biased but it worked for me. Best wishes and good luck.

    John

  • NW DINO
    NW DINO Member Posts: 31
    Barbaraek said:

    Good luck Raddude!

    It's imporatnt that you are comfortable with your decision...I'm glad you put on your boxing gloves. Please keep us updated so we can be a cheering section for you.

    Blessings,

    Barbara

    ERBITUX

    I just celebrated my 5 year NED anniversary.  SCC BOT.  My first chemo was an initial dose of Cisplatin.  I had hearing loss and was concerned the Cisplatin would escalate both my hearing loss & tinnitus.  Thus, we switched and I went with the Erbitux once a week for the following four weeks.  35 radiation treatments.  Like others have said the radiation can be more of a battle.  Very slight side effects from the Erbitux overall.  I am doing well and happy with my choice to go with the Erbitux.  You can certainly learn alot and what to expect in the upcoming weeks from vistiing this site.  This discussion board was very valuable to me and my road to recovery.  The radiation techs were also very helpful and let me bring my cd's to listen for my daily 10 minute visit. 

    More blessings,

    Dino

     

     

     

  • Rotorpilot
    Rotorpilot Member Posts: 4
    Just completed surgery/chemo/radiation for SCC tonsillar throat

    my last treatment was in September. Spent the entire summer in chemo/rad therapy.  It's very difficult, that's no lie.

    its hard to describe to some one what you are going to go through. But believe this one fact: you WILL die if you don't. 

    Do not waste time looking for the easier way. You must face and accept the treatment plan your doctors prescribe. It's going to be over soon enough, and there's a very very good chance you'll be cured; because these cancers are treatable. 

    I just got my first PET CT scan post treatment, no sign of active disease. For now, I feel relieved. The HELL I went through was worth it. I'd do it again now because I know I had the ability. I also had some of the finest specialists. I also have a devoted wife who helped me keep from quitting. 

    Save yourself. This is going to change you, to a new better person. But you must get on board. Don't delay. 

  • Raddude
    Raddude Member Posts: 84

    Just completed surgery/chemo/radiation for SCC tonsillar throat

    my last treatment was in September. Spent the entire summer in chemo/rad therapy.  It's very difficult, that's no lie.

    its hard to describe to some one what you are going to go through. But believe this one fact: you WILL die if you don't. 

    Do not waste time looking for the easier way. You must face and accept the treatment plan your doctors prescribe. It's going to be over soon enough, and there's a very very good chance you'll be cured; because these cancers are treatable. 

    I just got my first PET CT scan post treatment, no sign of active disease. For now, I feel relieved. The HELL I went through was worth it. I'd do it again now because I know I had the ability. I also had some of the finest specialists. I also have a devoted wife who helped me keep from quitting. 

    Save yourself. This is going to change you, to a new better person. But you must get on board. Don't delay. 

    Thanks all

    Getting ready for next week and I wanted to reach out and thank everyone. Looking forward to the fight and i'm ready.

    Happy new year to you all and god bless.

     

     

  • Barbaraek
    Barbaraek Member Posts: 626
    Raddude said:

    Thanks all

    Getting ready for next week and I wanted to reach out and thank everyone. Looking forward to the fight and i'm ready.

    Happy new year to you all and god bless.

     

     

    On your mark, get set...

    Go! Beat that cancer Raddude! Keep us posted and we'll be thinking of you and hoping for all the best.

    Barbara

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member