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Erbitux infusion...with or without radiation...side effects, success stories?

SuziX2
Posts: 1
Joined: Mar 2013

My husband is on the schedule to begin Erbitux infusion treatments beginning this Wednesday (March 27).  Quick back story: H&N SCC of the base of  tongue in 2005 successfully radiated and treated with chemotherapy; healthy and active for 7 1/2 years, the SCC came backon the side of his oral tongue; surgery and partial reconstruction of tongue, another success story in November 2012, no treatments.  Progressed remarkably well, speaking and eating within a month, skiing 5 weeks after surgery.  Mid February a sore appears on tongue, biopsy reveals tumor of the tongue, PET/CT scan shows metastisized lymph glands in the neck.  Surgery March 5, tumor on tongue removed, neck lymph glands inoperable for numerous reasons.  Radio-oncologist doesn't want to re-irradiate due to massive amounts received in 2005.  Onocologist suggests Erbitux infusion as paleative (sp?) meassure.  WHO HAS HAD ERBITUX and what were the successes and failures?  Side effects?  (Know about the rash) Would love to hear thoughts. 

We are to see an ENT radio-oncologist in NYC tomorrow who may have a different approach than our local radiologist.  Hubby fairly certain he does not want to have the raditation again, but we need to hear all our choices.  AGAIN, thoughts on re-irradiation for head and neck?  We've been told by numerous doctors that he will lose his ability to swallow and be dependent on a PEG tube for the rest of his life, however long that may be. 

Would like feedback.  Thank you and bless you all. Suzi  

CivilMatt's picture
CivilMatt
Posts: 2807
Joined: May 2012

Suzi,

 

Hi and welcome to the H&N forum, so sorry you find yourself here.

 

I had stage IVa, scc, bot, hpv+, 1 lymph node (surgery, radiation & Erbitux).  In my case my chemo onc said she had better luck with Erbitux (over Cisplaten) in cases which presented like mine did.

 

I had 1 loading dose followed by 7 doses (once a week following radiation).  Did it work?  When combined with the surgery and radiation I would (currently) say yes.  I am one year out and scans and exams say “alls clear”.

 

I had the (acne like) rash over entire torso and face.  It looked like it would itch, but mine rarely did.  My eye lashes and eye brows grew much longer and I lost one toe nail.

 

I wish you and your chosen team a lot of luck in going after the cancer with all the best tools available.  Hopefully they can knock the beast out cold.

 

Matt

Ladylacy
Posts: 457
Joined: Apr 2012

So sorry you are and your husband are going thru all this.  My husband was diagnosed with laryngeal cancer in late 2010.  He underwent 35 radiation and 3 chemo treatments.  Thought everything was fine.  But in February 2011 he started having trouble breathing and our ENT say he need a trach and another biopsy.  We were then referred to a H&N specialist at Emory Winship Cancer Center.  He said the cancer was still there and surgery was the next option.  Surgery was performed in March 2011 and during this time, a partial neck dissection was done and then they found out they need to reconstruct his throat due to the radiation.  Everything was good until April 2012 when he decided to have the procedure for TEP.  Well it wasn't done because the specialist found a tumor at the cervical of his esophagus.  We were told surgery was not a good option due to the previous radiation and surgery.  We were told that more radiation and chemo was the option.  Now we had been told that after the previous radiation, he couldn't have more in the neck area. 

Well the radiologist at Emory said they could pinpoint the radiation but that there could be serious side effects, i.e. cartoid artery could burst.  He underwent another 35 radiation treatments.  His throat did close off but the specialist was able to dilate and open his throat.  My husband had said he wouldn't do anymore radiation after the first time, so I was surpised when he agreed to it.  Now, of course, there is no more radiation in the neck area and the tumor is back and has spread to his lung, so no surgery either.  Only chemo, which won't cure, only prolong and could hasten.  My husband has elected no more chemo.

Just remember that everyone reacts differently to treatment and what one radiologist says can't be done, another says yes it can, as we found out.  Now I have heard from several who did have problems with the cartoid artery bursting and several who had no problems.  And I am guessing it could happen the first time too.  We were told at the outset that H&N cancer was the worst when it came to radiation.

Wishing the best for you and your husband -- Sharon

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Hind site, it might have been a better approach in November to use some sort of cheo back then..., but I am no MD and leave those decisions to my MD's.

As for having additional rads, a few on here have successfully gone through rads more than once. So I would presume an MD with the right knowledge may entertain that option as well as the Erbitux..

From my knowledge on here, Erbitux isn't technically a type of chemo. But it is highly effective for recurrence..

Several on here have had it as part of their treatment, both initially and recurrent...

This is an awesome site, and tons of great people...

If you get a chance, check the SuperThread..first post on here, tons of great info there...

Best,

John

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

Please take the time to read my bio.  Your husband's story and mine are fairly similar.  There is a huge difference bettween using erbitux as palliation, and erbitux as a treatment adjunctive to radiation.  Unless he has radiation, they are hoping to extend his life only.  The erbitux will not offer him any chance of cure.    This is where a second opinion is mandatory, not just suggested.  You need to make sure he is seen at a center that has a lot of experience with reirradiation.  Had I not been, I wouldn't be here typing away at you right now.  there is no guarantee he can be irradiated twice, but it is his only real chance at a cure. 

 

best to you both

 

Pat

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

Hello and welcome to our little home!

i'm sorry you find yourself here but if you have to be somewhere, this is the place!

I'm like CivilMatt in that I had radiation and Erbitux. When I first started treatment I of course had a million questions.

I was talking with my ENT/surgeon about the Erbitux that the oncologist recommended and he had lots of good things to say about it.

He said that he has many patients who have exhausted all other means of treatment and they now use Erbitux as a maintenence drug. He said while patients are on it, its amazing to see the tumors just "melt away", his words not mine. He told me that Erbitux alone will not cure you but in those who have no other options, it is a great drug to keep the tumors at bay.

 

As for side effects, I had the rash but taking the Doxycycline helped me a great deal! I had very long eyelashes...hard to say I miss much about treatment but that was a nice side effect for this girl! I didn't lose any nails but the dr was always checking those out to make sure. My skin was very very dry but I just made sure to lube up all the time and use very gentle soap.

Good luck to your husband and you!

Billie

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