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#10910 - 06/11/07 07:16 PM I've reached the diagnosed uncurable stage.  
Joined: May 2002
Posts: 1
geri hoffman Offline
Member
geri hoffman  Offline
Member

Joined: May 2002
Posts: 1
Sarasota, Fl
I have been diagnosed by my doctors of all protocal that there is nothing left for me except URBITUX, which is not a cure for anything, but might shrink the size of the pharangeal cancer and give me a little more time. The side effects, ones that are known, are horrendous - and most of the side effects are not known. I've had numerous surgeries, radiation, PDT, - you name it. Radiation is most distructive. I'm beginning to bleed from the site, which hurts like a drill. I had another Pet scan yesterday, so should know how much activity is foing on by Thursday, giving me an idea of how much time I have left. I've sooo much that has to be done before I can pass on - as if I had a choice.

Has anyone had experience with this new monoclonal antibody? Please quickly give my your feeling about its use. Thanks so much.

Geri Hoffman

#10911 - 06/11/07 07:49 PM Re: I've reached the diagnosed uncurable stage.  
Joined: May 2007
Posts: 666
Markus Offline
"Above & Beyond" Member (500+ posts)
Markus  Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
Atlanta
Geri,
There are 3-4% of the cases where Erbitux causes serious side effects (they say). A lot of people seem to get the an acne like rash which can be treated.
You want to make sure (INSIST) that they watch you VERY carefully when you get this the first time. Things can happen very quickly (when you are one of the 4%). It may help to take family/friend along so that they can talk with you when you get this and make sure you are ok. Also, looking at this web site you will find that people have gotten Erbitux for many months, so it can be tolerated long term.

More info on the OCF homepage, search for "Erbitux"

Best of luck!
FYI: If I could tolerate Erbitux (Cetuximab) I would take it, it is a promising approach. (I landed in the ER, so it is a no go for me)

M


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
#10912 - 06/11/07 07:57 PM Re: I've reached the diagnosed uncurable stage.  
Joined: May 2007
Posts: 61
jordan Offline
Supporting Member (50+ posts)
jordan  Offline
Supporting Member (50+ posts)

Joined: May 2007
Posts: 61
Illinois
I took Erbitux and didn't really have too many side effects. I got a slight rash on my face but that was it. I thought the side effects were very minimal-at least in my case. I had it once a week for 7 weeks.


SCC-tongueT3N0M0- IMRT 35times-1/07-3/07; along with one cycle of Cisplat & one cycle of Carboplat; weekly erbitux.finished all tx.3/07-supposedly gone. Recurrence 6/07. Age 31-non-smoker/social drinker. Devastated it's back.
#10913 - 06/11/07 08:30 PM Re: I've reached the diagnosed uncurable stage.  
Joined: Mar 2002
Posts: 1,140
Joanna Offline
Patient Advocate (1000+ posts)
Joanna  Offline
Patient Advocate (1000+ posts)

Joined: Mar 2002
Posts: 1,140
Pacific Northwest
Geri,

A friend took Erbitux for more than a year and the only side effect she experienced was the rash.

Best of luck to you!

#10914 - 06/11/07 09:40 PM Re: I've reached the diagnosed uncurable stage.  
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
JAM  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Arkansas
DEar Geri, To add to the above, my husband was on Erbitux also, and the only really hard to manage side effect [after the beginning dose] was the rash. We think it extended his life by close to 8 months and it might have been longer had he not had additional surgery [which further spread the cancer]. His Docs told us that he could continue to take it as long as he could tolerate it. Sending you prayers. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#10915 - 06/12/07 08:30 AM Re: I've reached the diagnosed uncurable stage.  
Joined: Sep 2006
Posts: 8,311
davidcpa Offline
Administrator, Senior Patient Advocate
davidcpa  Offline
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Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Gulfport, Florida
Geri,

I wish you all the luck in the world. Don't give in yet. I know you have been through hell and back but keep the faith.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
#10916 - 06/12/07 01:45 PM Re: I've reached the diagnosed uncurable stage.  
Joined: May 2007
Posts: 621
Kevin - Memphis Offline
"Above & Beyond" Member (500+ posts)
Kevin - Memphis  Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 621
Memphis, TN
I also took Erbitux and didn't have anything but a slight rash on my chest and upper arms (they tell me that if you get this, they know it's working). I took it once a week for the 7 weeks I was gettin my glow on (IMRT treatments).

As far as I was concerned, no big deal.

Hope this helps, even if a little.

Kevin


9 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.


�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking

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