New with the DX. Cisplatin VS 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.

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

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

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.

rcaulder said:

Drink and swallow

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

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 said:

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. 

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