New with the DX. Cisplatin VS Erbitux

I was missdiagnosed back in November with Chronic tonsillitis. Asked the Dr at the time could this be cancer? The response was a confident no. I ran with that. No followup. About a month ago I felt a new lump on my neck. Quickly went to ENT. BX Right tonsilar squamous cell cancer with lymph node cystic mets. I am told it is HPV P16 positive. I have already had 3 radiation treatments of the 35. Chemo got delayed this week due to my concerns with Cisplatin and the possibility of permanent hearing loss. We switched the plan to Erbitux. Going to take a few more days for insurance approval. My question is, was I focusing too much on the possibility of hearing loss over what works best ? The Dr was OK with Erbitux to. My medical history is I have had a total colectomy. I always feel dehydrated. I just thought cisplatin would be too tough for me. I do not want to play doctor. We still can take cisplatin or erbitux. My Chemo doesn't start till next week. BTW, my cancer will prove to be a blessing. Easy to have faith in good times. God's working on exercising and strenthening my faith and trust in bad times right now.  If He was going to test me by fire though, just wish it could of been a broken ankle instead.

Comments

  • MrsBD
    MrsBD Member Posts: 615 Member
    Erbitux

    There are a few of us on this site who have had Erbitux. It worked for me. I am nearing 8 months out of treatment for Stage 4a, HPV neg., BOT SCC that had spread to a lymph node on both sides of my neck. My cancer also went misdiagnosed by a hematologist for over a year. Thank God that lymph nodes can give us warning! I did not need surgery, just 33 sessions of IMRT and 8 weeks of Erbitux. There are some funky side effects like a massive acne-like rash and amazingly long eyelashes and eyebrows, but it's all manageable. Be sure to keep eating and drinking as well as doing any exercises that are recommended.  I felt pretty crummy and slept like Rip Van Winkle for about 4 months, but I feel great now. Let me know if you have any other questions. I'll add you to my prayers.

  • KB56
    KB56 Member Posts: 318 Member
    RCAULDER

    I had Erbitux as well as my doctor said he thought it would take care of my cancer and the side effects were much less severe.  I started out like you, in my right tonsil and then into the lymph nodes in the neck.     My 2 year post treatment visit with the Oncologist is Monday 6/1 and i already have the preliminary results and all NED!  The biggest side effect for me was acne and a body rash.  both cleared up before I finished treatment but was a discomfort as I was in the middle of treatment.

    The radiation will be rough but nothing you can't handle.  I had 34 radiation treatments with 7 (maybe 8) Erbitux treatments.   Erbitux was really a piece of cake compared to the radiation and you;'re read enough on this site to know radiation can be brutal.   Many good folks on this site will help you deal with the side effects and before you know it they will be behind you.

    My opinion, Erbitux is the lesser of the two evils with many fewer side effects.  Others will chime in as many have had Erbitux with success, and many have had Cisplatin with success.


    Good Luck.

    Keith

  • wmc
    wmc Member Posts: 1,804
    Welcome and sorry you need to be here...

    First and formost, Welcome... However, sorry you need to be here and fight the beast. This the best for support and questions you can find, and compassion as well. I never had chemo or radiation, just surgery. I was sent to a ONC to rull out cancer in 2012 due to weight loss and other conditions. I was told "You do not have cancer and not to worry" so I didn't. Would have been nice if he would have been right. About a year later I had cancer just above my vocal cords [3cm x 2.5cm] and due to my COPD had to have my larynx removed. I do wonder that if he was better I might have saved my vocal cords and not have to breathe out of my neck. But I have decided that is water under the bridge and just glad to be here. The others can help with your chemo questions, but i'm good with the understanding and support. You're added to my prayer list, and remember someone is always here if you have bad days it helps to just write it down and shaer the burden. We do understand what you are going through and feeling.

    Bill   2013

  • phrannie51
    phrannie51 Member Posts: 4,716
    There are several people here....

    who have had Erbitux instead of Cisplatin....we all seem to be doing equally as well.  Hearing loss is an issue with Cisplatin (I've heard a number of people who have lost a little and some a lot....I didn't lose any).  Erbitux has less side effects.

    Welcome to this forum....it is a GREAT place to hang out during treatment.  We have a lot of tricks up our sleeves to make it more bearable.

    p

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    welcome

     

    rcaudler,

     

    welcome to the H&N forum, too bad your misdiagnosis wasn’t the other way around and you had tonsillitis instead.

     

    Cisplatin has a much longer track record of success whereas Erbitux is new to the scene.  Cisplatin can have bad side effects but most certainly so can Erbitux. As an example, visit Tim6003 expressions page take a look at the results of Erbitux side effects. Of course his reaction is dramatic and most of us do not experience such trauma.

     

    I asked my chemo oncologist why she chose Erbitux for me and she said she had good luck in cases that presented like mine.  Which was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, radiation & Erbitux). 3+ years good

    If it was a broken ankle we could be talking about whether to tape it or cast it.

    Whichever way you go remember drink, drink, drink, swallow, swallow, swallow, it helps, no kidding.

    Matt

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    we don't know

    I do not want to play doctor

    What is best for you is the recommendations from what the medical specialists who are assigned to your case. Even an equally qualified cancer doc reading this thread is not able to make any informed call about your specific case. The most critical aspect of the entire cancer experience is trusting your doctors. For you it is a bit late as the boat has set sail for this leg of the journey. Go with their recommendation, having weighed the tradeoffs and options offered.

    Cisplatin is the go to proven chemo treatment. It can cause hearing loss but as you are aware of that side effect, you are able to respond the moment if you noitce it starting. Adjustments can be made at that point.

    There are many side potential side effects, some minor, some annoying, some quite severe. Never forget the main mission is to KILL the cancer. Never trade fewer treatment side effects for increased risk of recurrence. If you are otherwise healthy, then the goal is to KILL KILL the beast.

  • rcaulder
    rcaulder Member Posts: 70
    CivilMatt said:

    welcome

     

    rcaudler,

     

    welcome to the H&N forum, too bad your misdiagnosis wasn’t the other way around and you had tonsillitis instead.

     

    Cisplatin has a much longer track record of success whereas Erbitux is new to the scene.  Cisplatin can have bad side effects but most certainly so can Erbitux. As an example, visit Tim6003 expressions page take a look at the results of Erbitux side effects. Of course his reaction is dramatic and most of us do not experience such trauma.

     

    I asked my chemo oncologist why she chose Erbitux for me and she said she had good luck in cases that presented like mine.  Which was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, radiation & Erbitux). 3+ years good

    If it was a broken ankle we could be talking about whether to tape it or cast it.

    Whichever way you go remember drink, drink, drink, swallow, swallow, swallow, it helps, no kidding.

    Matt

     

    Drink and swallow

    Can you drink and swallow? For now I have opted not to have a peg.

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

    we don't know

    I do not want to play doctor

    What is best for you is the recommendations from what the medical specialists who are assigned to your case. Even an equally qualified cancer doc reading this thread is not able to make any informed call about your specific case. The most critical aspect of the entire cancer experience is trusting your doctors. For you it is a bit late as the boat has set sail for this leg of the journey. Go with their recommendation, having weighed the tradeoffs and options offered.

    Cisplatin is the go to proven chemo treatment. It can cause hearing loss but as you are aware of that side effect, you are able to respond the moment if you noitce it starting. Adjustments can be made at that point.

    There are many side potential side effects, some minor, some annoying, some quite severe. Never forget the main mission is to KILL the cancer. Never trade fewer treatment side effects for increased risk of recurrence. If you are otherwise healthy, then the goal is to KILL KILL the beast.

    I have done both

    My cancer was of the jaw. Cisplatin was rough on me. I had a hard time tolerating so they cut dose in half and did more frequently. I have lost hearing in my left ear but hearing specialist said fortunately, my right ear is phenominal. I pray that it stays that way. I had two recurrances so did a combo of Erbitux/Taxol last year. I tolerated that much better than Cisplatin, slight acne and did lose hair both temporary. My scans have been clean since. So for me personally, Cisplatin was much rougher and did not do the trick. We are each different. Wishing you well.

    Candi

  • hrowe
    hrowe Member Posts: 57
    I had Cisplatin

    I had a lower Cisplatin dosage of 50 mg/m2 IV once a week for 6 weeks. It was very tolerable. Absolutely no nausua or hearing loss. Not sure how I would have faired on the 100 mg dosage? Ask your medical onc what dosage he recommends? I also had 35 rad treatments 6/wk for 6 weeks. Thursday's I had two rad treatments during the week. NED since 06/12/12. Stage IV tumor at the Epiglottis into some lymph nodes. No surgery. Sending best wishes.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome..

    Sounds like you are in a good place... Attitude is huge, especially a positive one..

    I can only speak of Cisplatin, as that's what I had.., along with Taxotere, 5FU and Carboplatin.. While all were tough, I don't have any long term problems with any..

    As others mention, hydration is key to success.., also taking in calories, by whatever means needed, staying a head on your pain meds, trust in your MD's, and maintaining a sense of humor..


    Thoughts and prayers your way..

    ~John

  • keepfighting21
    keepfighting21 Member Posts: 7
    rcaulder said:

    Drink and swallow

    Can you drink and swallow? For now I have opted not to have a peg.

    Cisplatin

    RCaulder best wishes during your treatment.  I too had concurrent radiation with Cisplatin.  For me the radiation caused some discomfort with swallowing, but not enough to prevent me from doing so.  Cisplatin only gave me nausea....so it was difficult to keep things down 2 days after the session but of course got better.  My issue was I just was stubborn and didn't like the taste of most things.  I still have a peg tube, which I think prevented me from losing too much weight.  I was able to supplement calories through the peg with ISOsource.  If you're able to drink and swallow now you may be ok.  I was diagnosed with NPC.  Ironically, now I have to decide if Erbitux is something I want because I have another fight ahead of me.  Good luck!  Keep at it.

    keepfighting21

  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    I was unknown primary HPV+

    I was unknown primary HPV+ Squamous Cell carcinoma found in what they thought was a branchial cleft cyst in the right side of my neck. I had 35 radiation treatments to everything below my eyes down thru my neck. I had 3 rounds of Cisplatin, my doctor did not want to use Erbitux. I really have not had many problems from the Cisplatin but I know every one is different. They controlled my nausea very well. I have not noticed any problems with my hearing. 

  • Greg53
    Greg53 Member Posts: 849

    I was unknown primary HPV+

    I was unknown primary HPV+ Squamous Cell carcinoma found in what they thought was a branchial cleft cyst in the right side of my neck. I had 35 radiation treatments to everything below my eyes down thru my neck. I had 3 rounds of Cisplatin, my doctor did not want to use Erbitux. I really have not had many problems from the Cisplatin but I know every one is different. They controlled my nausea very well. I have not noticed any problems with my hearing. 

    Both

    RCaulder,

    A little late but thought I'd throw in my experience.  First though I totally agree with DonFoo's discussion above.

    I was Stage IV with bi-lateral mets with both jugular veins having affected lymph nodes enveloping the veins.  So the Doc went after it very aggressively which in his opinion meant Cisplatin (along with rad neck surgery and the full dose of rads).  Remember though that this was 5 years ago and at that time Erbitux was not as commonly used as it is today.  After 2 treatments of Cisplatin I lost 75% of hearing in one ear and 25% in the other.  ENT and ONC both agreed to switch to Erbitux.  So I got 3 doses of Erbitux over the last couple weeks of treatment. 

    My opinion at the time was that I trusted my docs totally and so I went with what they said.  They thought 2 doses of cisplatin was adequate after the hearing loss, but for saftey threw the Erbitux in to boot.  To get rid of the crap, I was willing to do anything.  It worked - 5 years out and all clear.  Just wanted to point out you can start with one and finish with the other.  Most important though - find doc's you trust.  You can always question their methods, but trust in my doc's put my mind at ease during TX.

    Best to you!

    Greg