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Erbitux anyone?

chantil
Posts: 13
Joined: May 2010

We have decided to use the radiation therapy, but now we need to decide by tomorrow whether or not to use Erbitux. Anyone have any experience with it? what about having to stay out of sunlight during and after treatment? We are aware of the 2% heart attack during injection, and the acne rash any other complications? Thank you for all the responses

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

Hi Chantil;

I went to the Stanford Cancer Center Tumor Board before beginning treatment. I asked about a chemo cocktail specifically comprised of Cisplatin, Erbitux and 5-FU. They told me that the current gold standard for treatment - HNSCC HPV-16 positive (in my case, base of tongue with mets to bilateral neck lymph nodes) was Cisplatin only. They stated that there is no evidence that the Erbitux and 5-FU result in an improved outcome and lots of evidence that these other chemo drugs cause excessive side effects. There is, however, a clinical trial study currently underway at Stanford and elsewhere, testing to see if adding the other two chemo drugs will improve long term survival rates. I just came along too late to be part of that clinical trial. I was given radiation in 38 separate treatments, and three rounds of cisplatin.

Deb

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

I'm a Cisplatin/5FU guy. No Erbitux. Had 33 radiation treatments for SCC BOT with mets to RT lymph. 3 weeks of Cisplatin on Monday and 5FU for next 96 hours via infusion pump. 2 weeks off and do it again until I had 3 treatments. This all while rads going as well. 8 months out and just got the all clear. PEG gone and port as well. Good luck.

Mike

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Same initial schedule as Landranger ~ my cocktail was nine weeks (three week cycles) of Cisplaten, Taxotere, and 5FU. Then an additional seven weeks of concurrent Carboplaten each Monday and daily Radiation with Amifostine (35 days).

SCC tonsil cancer, and a lympnode STG III HPV+

~John

Yankee617
Posts: 5
Joined: Jun 2010

Your chemo cocktail is often abbreviated TPF. I had the same 9 weeks on "Induction Chemo (IC)" (same TPF cocktail) and I also had the
same 7 weeks of chemo-radiation after, but I had both Carboplatin and Taxol. (Further, I did not have Amifostine.) This, I think, is now
the gold standard of treatment for tonsil cancers like ours and it shows a fairly high cure rate, especially for HPV-positive patients.

Last Fall, after I finished this treatment, I thought I was cured. Unfortunately, I had that damned extra-capsular spread... meaning that the cancer had spread outside one of the lymph nodes in my neck and, as a consequence, wasn't neatly "encapsulated". I think this spread
was responsible both for the false-negative PET/CT last Fall (because the sugar-uptake was not concentrated, but diffuse, in my neck)
and for my early-May 2010 recurrence (because a few of the cells spread to my lower neck, just outside the region that was irradiated).

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Sorry to hear that, how long after treatment did they finally get the diagnosis you now have and what is the plan of action?

JG

Yankee617
Posts: 5
Joined: Jun 2010

This study, known as the EXTREME trial, presented in the Sept 2008 issue of the NEJM,
showed that adding Erbitux (aka Cetuximab) to Cisplatin and 5-FU increased median
overall survival from 7.4 months to 10.1 months. That's a very substantial increase.

http://content.nejm.org/cgi/content/short/359/11/1116

"As compared with platinum-based chemotherapy plus fluorouracil alone, cetuximab
plus platinum–fluorouracil chemotherapy improved overall survival when given as
first-line treatment in patients with recurrent or metastatic squamous-cell carcinoma
of the head and neck."
===

My situation is rather dire. Diagnosed in March 2009 with T1N3M0 SCC (left tonsil primary)
caused by HPV-16, I underwent 9 weeks of Induction Chemo followed by 7 weeks of Chemo-
Radiation which concluded in late August 2009. Despite a negative PET/CT, I elected to have
neck dissection on 12/1/09; this showed active disease with extra-capsular spread, so I then
underwent an additional 6 weeks of Chemo-Radation (this time including Erbitux) which
concluded in late February 2010. Now a tumor has appeared in my neck (with possible
metastasis to my lungs) and I'm scheduled for another surgery later this month (to remove
the tumor) followed by yet another round of Chemo-Radiation and, hopefully, additional
Chemotherapy after that. Prognosis is poor, but I'm still fighting.

I'm here in Boston area getting treated by the best doctors in the world (or so they tell me).
But the good doctors at Mass General (MGH) and Dana Farber (DFCI) seem to have their hands
tied by federal regulations. I'm afraid I'll die because the US Gov't is afraid of hurting me.

I'd like to learn about any promising (although unapproved) treatment, and where I can go to
get it (anywhere on earth), in case this next round of surgery/radiation/chemo doesn't eradicate
my disease. Desperate times call for desperate measures.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

First welcome to the forum, and also sorry for that diagnosis.... Hopefully they will find the right mix for you soon....

How is it that the PET/CT didn't show any activity, did they explain that to you?

Good Luck, God Bless,
John

Yankee617
Posts: 5
Joined: Jun 2010

Unfortunately, PET/CT is notoriously unreliable. It has a fairly high rate of
false-negatives as well as a fairly high rate of false-positives.

A negative indication is always welcome, but could be a false negative. My PET/CT in
early November 2009 was negative but I still had a large swollen mass on my neck.
Three of my four doctors recommended I undergo neck dissection, the fourth said
he was "on the fence". I checked the statistics which indicated about a 30% chance
that this swollen mass would harbor cancer... so I elected to proceed with surgery.
I'm VERY glad I did!

Similarly, a positive indication should be followed by more definitive tests. My PET/CT
in early May 2010 was positive for a lump in my neck and this was confirmed with a
needle biopsy. This same PET/CT showed two tiny indeterminate spots on my lungs;
unfortunately, its impossible to biopsy these spots.

Just think about how PET/CT works: they give you a radioactive sugar to drink. More
of this sugar goes to places with high metabolic activity (like cancer cells) and less of
it goes to places with low metabolic activity. The machine then tracks where the sugar
goes. If you injured something, or just exercised before the test, the sugar will go to
the site of this injury or the exercised muscles. So the doctors must look at the places
that "light up" and decide whether or not this represents cancerous activity.

Its not a very good test, but its the best we've got.

By way of comparison, biopsies can only look at the biopsied tissue. Consequently,
they have a high false-negative rate (because the biopsy might miss sampling the
cancerous tissue)... but they generally have a low false-positive rate (so a positive
biopsy is really positive).

All tests have some level of false-negatives and false-positives. If these levels are
small, the test is good/reliable; but no test is perfect. My first HPV test (on the tonsil
tissue they removed on 1 April 2009) was negative... which surprised both my doctors
and myself... so I insisted they send this same tissue sample to John's Hopkins, where
they had a different procedure to test for HPV. This second test was positive for HPV-16.
In the interim, my doctors requested a test for an HPV-related "marker" on this same
tissue sample and this test for a "marker" came back positive. Thus, the preponderance
of the test results showed that I was HPV-16 positive.

PS) I'm a scientist, but not a medical professional.

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

Sorry to hear the report, but like you said keep up the fight and never give up.

Lena Rose
Posts: 73
Joined: Apr 2010

Hi Chantil,

My husband (Stage III, base of tongue)will have his last dose of 7 on Monday of Erbitux and Cisplatin and has been handling it fairly well. We went with the lead doctor's advice at Dana Farber Cancer Institute specializing in the field of HPV head and neck cancer. Newer studies have shown a greater survival rate with Erbitux. My husband does need to stay out of the sun and a terrible rash showed up on his face about a week into treatment, but surprisingly still has his hair!

Clearblue
Posts: 188
Joined: Apr 2010

Chantil,

My wife is on Erbitux only, as she has Fanconi Anemia, which excludes chemo owing to hypersensitivity.

First infusion: She was given a pill (alergin) by the nurse against possible allergy reaction- a precaution. This is given before the infusion. Start moisterizing the skin immediately and use a soapless (or oil based wash) wash for showers. Cetaphil cream wash, for example.

After about 4 days, my wife broke out in acne-form rash. Face, scalp, and upperback by the time we got to two weeks. Pistular , red, and the very itchy stingy sensation. Most evidence on how people deal with this, is anecdotal.

This spread to her arms, chest and sparcely legs. According to studies, there is a correlation between efeectiveness and the severity of rash. Most people get rash, but it differs in intensity. There is written protocol on what topical lotions and oral medication to take but this depends on the severity; which you can follow up from week to week. I would suggest that you get a dermotologist on board too

Imitially we took an antibiotic (doxycycline)for a week but my wife chose to stop this as when we took a culture to check possible infection, it showed up negative. The protocol for topical and oral antibiots is for a longer period of time and most patients report that it improved their situation.

Her first month was difficult, mostly controlling the itch and burning sensation.
This week it has been much better, and there havent been any other effects, no cramps, weight loss or hair changes.She has experienced dry eye lids, which can be treated with eye drops.

Google the following for a good explanation of the subject:

NCCN Task Force Report: Management of Dermatologic and Other Toxicities Associated
With EGFR Inhibition in Patients With Cancer-
Volume 7 Supplement 1 Journal of the National Comprehensive Cancer Network (2009)

Managing follicular rash related to chemotherapy and monoclonal antibodies-Judy Hetherington.

Many on this site have had chem- erbitux combo, or rad erbitux, so search posts on this site for erbitux.

I hope this helps you in some way,
Good Luck
Clear

Fire34
Posts: 351
Joined: Feb 2010

Chantil
I was much like Deb except I had carboplatin instead of cisplatin. I was part of a clinical trial at U of Chicago that compared, Cisplatin erbitux(weekly) and 7 weeks of daily radiation vs Induction Chemo with Erbitux taxol & carboplatin, and twice daily radiation with Erbitux (weekly), and concurrent chemo of 5FU & Hydroxyurea. I had the twice daily radiaiton arm. The erbitux was not nice to me anyway, I had a way lot more than the acne, I had an almost shingles like rash on the right side of my chest that I was given antibiotics for, my arms & legs received it pretty bad also, but the nurses kept saying the worse the rash the better it is working. Dont let my experience make you nervous as we are all different.
Best Wishes & Prayers on your treatment
Dave

Clearblue
Posts: 188
Joined: Apr 2010

What antiboptic did u use and what other topical treatments, if at all
Clear.

Fire34
Posts: 351
Joined: Feb 2010

They gave us a lot of neosporing that helped somewhat. When I arrived on Sundays nights for my inpatient weeks they started me on the 5FU and a bag of saline for hydration with numerous antibiotics piggybacked. I have a follow up in a couple of weeks and I willI was on vanco find out exactly what they are for you.
I had more infections than any one in their right mind would want going thru this but that was the hand I was delt. I was on vancomyacin for most of my treatment and that just beat the crap(literally) out of me.LOL which was the nasty side effect of that stuff, but I know I was on others that I will find out for you. Best Wishes & Prayers
Dave

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