My husband is due to start Erbitux on Monday. Has anyone had sucess for a long period of time with this? He has mets to right lung from neck. Chemo didn't stop it.

There is a page that talks a lot about these kinds of monoclonal antibody drugs at the link on the main site http://www.oralcancerfoundation.org/treatment/targeted_therapies.htm

Having said that, Erbitux is usually used in combination with other drugs and not as often as a mono therapy by itself. It method of action is to stop the replication of cells as opposed to killing them like we normally think of chemo drug doing. Those that have posted here that were having positive results to certuximab ( Erbitux) seem to have the greatest degree of the rash side effect from it. Dealing with this rash is discussed in a PDF document on the bottom of that same page. I do not have any personal experience with it, but I expect that you will soon hear form other posters that do.

It is a relatively new drug to head and neck cancer use, and there isn't really very long term data on it (more than what was required to get the extra indication from the FDA) The longest term data is in the realm of colon cancer where it was first approved for and used.

In our case, when the chemo drug [carboplatin] did not work, John was put on Erbitux alone. For a several months it worked well, shrinking the tumor alot. Then he fell and broke his jaw implant and had to have more surgery. The Docs feel that the surgery allowed the cancer to spread. After that surgery, the Erbitux could not control things. He was on it for a total of about 8 months. The rash was a real problem and we had little luck finding anything that would really help control it. Be sure to ask your Doc how much experience he\she has had with Erbitux and don't ignore the rash if it starts. Try to stay ahead of it. Amy in the Ozarks

The Dr told me that I would look like I had zits on my face and prbably my arms, My skin would look like leather from the erbitux, Just think acne at my age LOL Bu they will give me some type of lotion or cream to put on it to stop the itching. I might be able to answer this next week.

Suemarie,
In addition to the side effects (i.e. rash) that was mentioned above, there may also be more serious effects in 4% or so of the cases.
I was originally slated to be treated with erbitux in addition to IMRT. Long story short, I was allergic to it and ended up in the ER due to an anaphylactic shock. This happened very quickly within 15 minutes of the first infusion. What was annoying in my case was that we told our MO that we thought that there was a chance of an adverse effect (I used to work with the type of mouse they used to make the MAB).

Note, if I could have tolerated it I would have gladly taken erbitux. However, I also think that the patient needs to be watched very carefully during the infusion especially during the early phase and especially the first treatment. This is not always happening (certainly not in my case and not with my first MO...). It is a good idea to be watchful yourself.

Best
Markus

I had a nurse with me constantly while getting the 1st 2 IVS before they started the erbitux. She kept monitoring my reaction and made sure I was Ok. I forget what the 1st 2 consisted of, but as soon as they were finished she started the erbitux and I was fine with it. It took 4 1/2 hrs the 1st time and was told from now on it will take 1 1/2 hrs.

Thnnk you all for the information. I will keep posting with results and side effects. Keeping our fingers crossed. Sue

Hi all- My husband just had his first treatmnt on Monday. He made it thru the injection allright however during the night he spiked a high fever with vomiting and the chills. He had aches and pains all over and a very rough night all in all. Doctor is not sure if it was a side effect or a virus. It seems a little coincidental to me and most of the symptoms were listed under "less common side effects". We won't really know until he gets the treatment next week. Any thoughts?

Sue,
did this go away the next day? As long as your MO is on the ball you should be fine, but this needs to be watched really carefully.

M

Markus-We'll see tomorrow. He just had the 1st injection on monday. Did you have these symptoms? I think the nurse is more "on the ball" than the doctor. The doctor that was on call this morning didn't think the meds caused the problem but it says right on the sheet that these are possible side effects. He has already been weakened by chemo and radiation that ended in December. I don't know why it would be improbable that this is a reaction to the Erbitux.

Well, I'm about to go into my 3rd week and no side effects as of yet. Not even the rash or dry skin. Just this dry mouth, throat and burnng tongue.

Jim
that is good news. There are rumors around heard from people that when you get a rash that "it" is working..... I find this difficult to believe but have no fist hand data on this.

Sue,
Im my case the acute reaction developed within 10-15 minutes of the start of the infusion. I only had about a 10th of the dose, anything more would have been too much. (in retrospect it makes for a good story, foamy mouth and all that!!!)

M

Our doctor actually told us that the rash is a good sign. No rash yet but my hubby is really tired. Also, it seems that there is yet another lump in his neck. His last surgery was on Jan. 16th- this poor guy can't seem to get a break. We go to surgeon on Mon. to check the new lump. Sue

Markus,, the Dr checked my mouth this morning after rads, He said it is working just fine. That did ease my mind a little.

Sometimes it is best to let sleeping dogs be... however.
Regarding the statement that the rash is a good sign.....
Consider that the rash is actually very common, it occurs in 76-88% (10% severe) of the patients.
Clearly, SOMETHING is happening, the question is what is happening actually related to erbitux being effective (i.e. inhibit growth of EGFR+ tumor cells) or is it an unrelated side effect which then since it almost universally happens is called "good". The rash occurs in places that have nothing to do with cancer and it would also occur in people that do not have cancer.

It is clear that erbitux is effective under the right conditions, especially in combination with radiation. Thankfully, the really severe adverse effects are rare and most likely happen very quickly and generally during the first infusion.

M

http://packageinserts.bms.com/pi/pi_erbitux.pdf

No long term experience yet but Erbitux magnified the effects of radiation burn but appears to have worked well enough to avoid a neck dissection. My advice is to watch carefully the skin on the face and neck and really bug the care providers about radiation gel and creams. I ended up having to use Vigilon second skin burn dressings as my reactions were so severe . However, the docs at Georgetown University's Lombardi Cancer Center also repeated the observation that their patients with the worst rashes and reactions had the best clinical response. So far so good with recovery

Charm2017,
I had the same response to the Erbitux, Really cooked my jaw line, throat and upper chest area. And I had the same response from the Dr's...the more bigger the reaction the better its working. I too am ok as of now...1 clean PETS and two atta boys from the ENT.

Sue - I just wanted to send you happy thoughts and prayers today. I've been so caught up in my own little world with the "newness" of all this that I didn't stop to notice who else was currently going through tough stuff too!! I hope the Erbitux works great and your hubby doesn't have another fever/chills experience.

I am on Erbitux along with 2 other chemo drugs. I have the rash on my face, nose and on each side of my nose. Looks like a lot of pimples, 16 again I guess. I did not know that the rash meant the treatment was working, good, fill my whole face with it!!
Con

Markus, I should have posted sooner. I have the "ACNE" look and the tough dry skin. It's beginning to clear up and I am starting to look more like my old self. Still ugly, but look much better. LOL...Now for some teeth someday and heck, maybe I can mbe an OC add. LOL I think the worst part of it was where the Rad mask covered from the nose down over the chin. My tongue still burns like fire,even with water. Hopefully this will ease up soon too.

Jim,
You're gonna think I'm nuts but try a different brand of water. I found that I could only drink certain brands of bottled water and couldn't drink tap water all. It had to be ice cold. I think it is the mineral content. Unfortunately I don't remember which brand worked. Great Bear comes to mind. Experiment. What does the hospital use and can you drink that?

Take care,
Eileen

I buy spring water and it works good, but my lips and tongue are raw. This is what makes it burn. I am healing very fast tho. A week ago I had a rash and blisters on my face down to my chin. Right now most of it has cleared. Thanks for the advice tho. I'm thinking of you.