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Standard Chemo or Protocol (Cetuximab=Erbitax)?

cureitall66's picture
cureitall66
Posts: 853
Joined: Aug 2012

Loved one Dx Stage IV, SCC BOT with 2 lymph nodes involved to neck (left side for both tongue and nodes). No surgery planned. Tx is Chemo/Rad. We are getting prepared for our October 8th treatment date. Must make a decision by this Friday (Sept 28th) as to what Chemo we'd like to do. Need some input and experience here please!

Do we take the standard Chemo or do we go with the current Protocol(Cetuximab/Erbitax) which will be administered once a week for 7 weeks? Our understanding is the Protocol has fewer side effects than the standard Chemo(not sure what the standard really is). But, will get medication prior to the Protocol to help eliminate or decrease the fewer side effects.

Here's the info given to us regarding the research study (Protocol):

1. High success rate in getting rid of oropharyngeal cancer in patients who have not smoked, or only smoked a minimal amount, and also HPV patients (better prognosis)

2. Keeping in mind the better prognosis, it is possible that reducing the intensity of therapy will not affect the high rate of tumor control, while reducing the side-effects of therapy.

3. Investigators plan to reduce the intensity of treatment by replacing the currently used chemotherapy drugs with this FDA approved drug, Cetuximab, which is a monoclonal antibody to a growth factor which helps cancer cells grow. By opposing the effect of the growth factor, Cetuximab may help radiotherapy kill cancer cells without a lot of effect on the normal tissue.

4. It differs from chemotherapy in its more selective activity against tumors compared to normal tissue. Cetuximab has the chance to preserve the high rate of success in killing the tumor but may reduce the side effects and complications of therapy in comparison to the chemotherapy drugs.

So...it just cuts the side effects down? Tell me what you've used if you were diagnosed to anything similar. What was your experience? Why did you choose it? If you didn't choose it, why? Or maybe you weren't offered it.

Also, if anyone has used this drug, do you know how long it's been available and any positive or negative feedback you've gotten from it yourself or from doctors?

Thank you in advance for your answers and suggestions. Really looking for some help here.

C

boardwalkgirl
Posts: 263
Joined: Jun 2012

I was diagnosed with Stage IV squamous cell carcinoma that was found in a lymph node on right side of neck, unknown primary, HPV+. My oncologist did not give me a choice, though I asked about Erbitux. She insisted that Cisplatin was the treatment of choice for me. I do know Erbitux has been on the market for a while as I work in a pharmacy and have purchased it for several years now. Sorry I can't help with your decision making, but good luck with that and with whichever treatment you choose. My prayers will be with you.

phrannie51's picture
phrannie51
Posts: 3664
Joined: Mar 2012

didn't give me a choice....I didn't even know about Erbitux until I came to this site, and I've never heard of Cetuximab. My oncologist told me right up front, that I'd have 6 Cisplatin treatments, and that the last three would be Cisplatin and "another drug"....he didn't tell me what that would be until I'd finished the first three. It ended up being a 4 day pump treatment of 5FU...along with the Cisplatin.

All I can tell you is I'm glad my Dr. didn't "leave it up to me to choose"...the temptation to go the easier way would be huge (none of it's that much easier, just a hair better, I think)....at the same time I was all for them lighting a bomb inside of me, if it'd get rid of the cancer :).

p

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I was diagnosed with SCC of the larynx stageIV and HPV negative. I never smoked but was exposed to a lot of second hand smoke. My onc didn't really offer me another choice. He told me this would be as good as traditional chemo without so many of the side effects. My surgeon also said this was the way to go and my rad onc said it works really well with rads. I did get the skin rash but not terrible, just felt like a teenager again :-)
There were times I didn't feel 100% normal the night of my infusions but nothing I could really put my finger on. I went once a week for 8 weeks.
Just had my first post treatment PET/CT today so hopefully I will get the news that treatment worked!!!
I hope this helps you a little bit with your decision. Take good care.
Billie

Crazymom's picture
Crazymom
Posts: 295
Joined: Nov 2011

I did not have a choice. I got both. Erbitux and Cysplatin and another which I cannot remember what the name of. I wanted to be aggresive with my treatment amd never questioned them. I decided to just trust my doctor. Good luck! Ann

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

Some of us have had one, others have had the other. Personally, I've had about everything but the kitchen sink. This last go around, I was treated with carboplatin/taxotere for four cycles, and they planned erbitux simultaneously for a total of 18 treatments. I tolerated the chemo pretty well. No problems with blood counts, no neuro or renal toxicity. I didn't tolerate the erbitux well at all. My face just about completely peeled off. They had to finally stop the drug about a month before planned, as things just got too out of hand.

Even so, I am alive and NED seven months later, so things are going pretty well. Erbitux has been around about ten years. It is the drug Martha Stewart went to jail over, for insider trading. It lacks conclusive data, as it just hasn't been used enough yet to be certain statistically, but all preliminary data looks good for SCC.

You will hear all kinds of opinions on these choices. Some from lay people like those of us who have been treated. Others by your own treating physicians. Don't let these arguments make you crazy. Just pick a plan, and go for it.

best

Pat

Barbara B
Posts: 40
Joined: Sep 2012

I can only tell you that after the doctor said he would ONLY use Cisplatin, we were able to compromise and have it administered once per week to "reduce" side effects. We were concerned about my husband having such a high dose put into his system at one time. He was diagnosed Stage II/III BOT one lymph node HPV+.

One year post treatmane, and so far, so good.

And I agree wiht Pat, you will get so many differing opinions, everyone wanting to help, but the best person to ask is your physician. Maybe he can say whaich protocol has yielded better results for him?

Whatever you decide, stay positive and we are all praying with you.
Barbara

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

I had same diagnosis as boardwalkgirl, same chemo. Cisplatin, once per week for seven weeks...concurrent with radiation.

I tolerated it well, though the last infusion was touch and go as my blood counts were down.

I completed treatments April 2010. NED.

Best to you and yours during this battle. It is rough, but you can do it!

cureitall66's picture
cureitall66
Posts: 853
Joined: Aug 2012

Preliminary thoughts were that it was HPV, treatment plans were pretty much set ( 7 weeks radioation and 1 day of chemo a week). Just had to make a decision on type. Path report today after this post shows NEGATIVE HPV, waiting on second path report. Now what should we think?

tuffenuff's picture
tuffenuff
Posts: 273
Joined: May 2012

I'm reluctant to say this since so many on here have opted for Erbitux and I dont want people to start second guessing themselves.... but my doctor called Cisplatin the "gold standard". He also told me that the latest data is showing Erbitux to be SLIGHTLY less effective. I think "slightly" still makes it an option f you are worried about side effects. I was concerned but wasn;t thrilled about Erbitux so we broke my Cisplatin up into 7 weekly doses instead of 3 large ones. I never got sick and my kidneys work just fine. And as of last Friday, my PET scan says I'm clean.

Just something to think about.

BTW - stage 4a tonsil with huge mets in 2 nodes

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I am not a doctor and I can only give my "opinion" and share my experience.

I was a BIG guy (320lbs) but I was in great health, no high-blood pressure, no diabetes and had never had a surgery or even a cavitiy (until c diagnosis).

I was base of tongue stage III w/ one lymph node HPV+. My primary tumore was 2cm across and my lymph node was just barely under 3cm across. I was NOT given a choice, I was told Erbitux and Radiation would be my treatment.

Only as I was going through tx did I ask the docs why not the "standard old and tried chemo drugs and why no surgery).

I was told surgery for my base of tongue was not needed as HPV responds well to the rads and erbitux, they said my tumor should melt away, and it did. Surgery could be performed after if the tumor did not melt away.

They said Erbitux was affective with less side affects and at my age, Erbitux would be the way to go.

IF I had been given the choice when I was in "panic" mode I probably would have said "throw the kitchen sink at me". Which means I would have demanded surgery, all the platinum based drugs (and Erbitux) as well as radiation. I guess what I am saying is this, not being a doctor and not understanding all there is to all the options and at that moment in time being afraid, that's what I would have done.

Now, looking back and being 8 months out NED (No Evidence of Diseaase) I am happy with my treatmnents and NOW knowing what I know about some of the side affects of the old chemo drugs I understand why the docs went with the plan they went with.

The only thing that is throwing a monkey wrench in my opinion to you is that the HPV test was negative.....thus your doctor (and Pat, longtermsurvivor) might be the better person to ask with this revelation why not the "gold standard" plan which does include Cisplatin.

I know you are deep in so many things to consider....so take the extra time to ask and feel good about your choices and as Pat said, go with one. Today's medicine is far better than it was just a few years ago for our type cancer.

Best,

Tim

PS I forgot to mention (not that this is a bad thing, in fact docs said it was a good sign the Erbitux was working)...but I had a TERRIBLE reaction to Erbitux. So bad I did not get the last dose. My face looked like I had been in a nuclear accident :) My oncologist told me "you were one of the worst reactions I had ever seen" ... Don't I feel special. :)

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

Cris, personally.... I wouldn't get wrapped up concerning chemo, or the chemo equivalents.

I'll take chemo all day long, for me and probably everyone else on here, it's the radiation that's the worse part of treatment. In most cases, it's also the one that will give the majority long term after effects.

So as far as chemo or equivalents...bring it on, whichever the MD's feel will benifit you most and have the best proven results.

More than likely it's going to be the rads that will wear on you the most, and the longest.

And I know there have been a few that have had nearly all of the sides that can come with chemo, and erbitux..., but overall...I think most had a manageable amout of pain and torture, compare to a much larger base of patients had from rads.

But.....would I do the rads again...absolutely, if the MD's feel that's what is best for me and survival.

Also, actually, unless I'm wrong there is no "standard" protocul, or "new" less invasive protocul... More than likely, it's just the protocul your specific facility is using...which may have better results currently, or however they have decided to classify them.

If you look between some of us that have been here for awhile, and some just starting out...there is only about six types of chemo or equivalents being used, or a mixture of them.

Best,
John

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I had HPV16+ SCC tonsil, and was given a choice of cisplatin & rads or entering a research study where half of the group got cisplatin & rads and half got erbitux & rads. I chose the research study, and I got erbitux & rads.

the info you got is identical to what I was told.

I just had my follow-up PET scan today, so can't yet be certain of NED status. But I'm optimistic. ;-)

for me, the erbitux side-effects were fairly mild, and short-lived: "the rash"--ugly but not all that painful; depletion of magnesium and potassium, which required a couple of infusions prior to getting the erbitux; and bizarre inflammation & infections of the nails of both middle fingers. the nail thing took about a month to get rid of and was the most difficult.

As I understand, the possible side-effects of platinum-based chemo (cisplatin) can include permanent damage to kidneys and hearing.

If my erbitux treatments aren't completely successful, I suppose "Plan B" treatments would include Cisplatin. there's always a Plan B.

best wishes on whatever path you choose...

cureitall66's picture
cureitall66
Posts: 853
Joined: Aug 2012

Thanks for sharing your experience. Praying you will be NED!

Our options now may change since posting this earlier. We were called by the previous ENT that the biopsy test showed HPV negative. Very peculiar since he is not a smoker or a heavy alcohol drinker. So our option of the research study may be thrown out of the picture. The new ENT at the Hospital he is going to now for treatment has sent their biopsy out to see if they get the same results.... Actually, we were hoping for a positive on this.

More waiting... :(

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

LOL, they all have side efefcts...luck of the draw on which you may or my not get.

Some of the side effects of Erbitux;

Heart Attack
Lung Disease
Skin Problems
Allergic Reaction
Electrolyte Depletion
Late Radiation Side Effects
Skin Problems
Kidney Failure
Blood Clots in the Lungs

Point being..., they all have side effects that are potentially bad.

But for that matter, nearly every drug out there has possible side effects, most include death.

I think you can see by the numbers here, that the majority have a few side effects, most not long term..., but yes, there are a few that have long term effects from chemo.

Overall, I believe that there are many more that have long term radiation side effects.

But side effects are (at least for me), better than the alternative...

JG

cureitall66's picture
cureitall66
Posts: 853
Joined: Aug 2012

Before this obstacle of HPV negative came into play later today, I was really doubting the research study...after all, we just want the best for a cure. If by chance the second biopsy of checking HPV is reversed, I don't think I'm sold on this protocol.

I'm frustrated that they leave it up to the patient to decide....WE ARE NOT DOCTORS...HOW ON EARTH DO WE KNOW WHAT TO DO?....LOL

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

nobody said they don't all have side-effects, lol.
I detailed my reaction to erbitux, and I believe Tim had a particularly horrible reaction--well documented on these boards.

shall we list all of cisplatin's risks too?

regardless, my oncologist said the same thing that cureitall's apparently did: given my dx and general good health, I would probably have an easier time with erbitux. that was my rational behind hoping for erbitux, and I can't complain about the choice.

As always, your mileage may vary.

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

To list a few;

•blood and bone marrow problems
•abnormal laboratory test results
•allergic reactions
•anaphylactic reactions
•cerebrovascular problems
•ear or hearing problems
•eye or eyesight problems
•faster heart rate
•heart attack
•heart problems
•injection site problems such as cellulitis, fibrosis or necrosis these may happen if Cisplatin leaks out of the vein or if it is not injected properly
•kidney problems
•loss of appetite
•loss of taste
•lowered blood pressure
•male infertility - this may be permanent
•metabolic problems
•nausea
•neuropathy of the extremities
•oedema of the face
•paraesthesiae
•seizures
•skin rash or rashes
•stroke
•tetany
•tinnitus
•urticaria
•vomiting
•wheezing

Other than the above possibilities, it usually does a heck of a job on kicking cancer butt...LOL.

JG

davidkay
Posts: 5
Joined: Oct 2010

6 weeks into 2nd round of weekly Cetuximab (Erbitux). Pretty nasty stuff (for me, lots of skin sores and the like). BUT IT WORKS!

Had to cut the first course short due to an infected port. Still, it got me to NED anyway, and I hope it can get me there again...longer-term.

David

CivilMatt's picture
CivilMatt
Posts: 2900
Joined: May 2012

Cureitall66,

If it was me I would grab your doctor by the short hairs and ask him “what do you recommend and why” (he is the brains of this adventure). You are not a doctor, none of us here are doctors (maybe one). If you really have to decide I would go for Pat and Tim’s answer “throw the kitchen sink at it” and then double it. I hate this c _ _ _, I’ve got enough to worry about without having to bone up for cancer treatment 101. Any decision you make will likely be the correct one, I can not believe your doctor could or would let you make anything but the best choice.

See what Erbitux has done to my calm demeanor, you better watch out.

Best,

Matt

cureitall66's picture
cureitall66
Posts: 853
Joined: Aug 2012

So many obstacles before we can even get started. And the doctors land you this research study that we KNOW NOTHING about. Where are the statistics? But, since our options were diminished since I posted this earlier( HPV came back negative) this protocol is no longer available to us....unless the second biopsy is reversed (2 weeks to wait for that). We aren't sold on this drug...

I have only two words to say.....CANCER SUCKS!!

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

What kind of biopsy was performed? My husband had two FNAs (fine needle aspiration) that were neg for HPV. His Rad Onc did not believe those results and ordered a core biopsy. I guess that means more tissue was taken for testing. It was a much more involved procedure than the FNA. The core biopsy was positive for HPV.

cureitall66's picture
cureitall66
Posts: 853
Joined: Aug 2012

It was a fine needle aspiration done by original ENT. Once we decided to go the U of M hospital he got a new ENT...who was relying on the results from previous ENT. The nurse told us that the sample (assuming from original biopsy)was already in the works for checking for HPV. Hoping the second time around will secure it.

Now that your mentioning "core" biopsy, I'm wondering if they will or should we ask for that to be done.

You know, sometimes we just don't know when to stop and let the doctors handle this kind of thing or keep pressing because of our gut feeling.

I guess if it comes back again as HPV negative and they go on with treatment, and it is actually positive, it just means the outcome will be more favorable. It would just be nice to know it ahead of time. :)

Very frustrated with the running in circles and hoops to jump through.

Thank you so much for sharing this with us!!

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

You could always request that one be ordered. But regardless of the result, the treatment is the same. It's hard not knowing. I wanted that test to be positive and when it wasn't, twice, it was very distressing. I cried when my husband told me the core biopsy was positive.

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

Double post, oops

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

I was "asked" if I would like chemo with my rads ( it was like asking
if I wanted a salad with my meal). Anyway I asked do I need it and
he said NO but he wanted to offer it as it helps the tumor responds better
to the rads, once again I asked do I need it he said NO the outcome
will still be same. So I opted NOT to have chemo, I just had rads.

T2/T3 0N 0M tonsil HPV+ ( 3.8cm Tumor on the left )

God bless
Tonsil dad,

Dan.

hwt's picture
hwt
Posts: 1881
Joined: Jun 2012

I was not given a choice and had Cisplatin. The first tx kicked my a** so the ONC cut me to half does weekly and that worked much better for me. I did not receive my last dose. I have had a CT scan w/contrast that was NED but won't have PET til October.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I was HPV negative too and still had erbitux. It's hard to say why the Dr's pick one drug over the other.
I agree with Matt, point blank ask the dr what he would do if were him or his wife, mother, daughter.
Good luck on this oh so confusing decision.
Billie

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