Previous Thread
Next Thread
Print Thread
#38776 07-09-2005 04:57 AM
Joined: Jun 2005
Posts: 25
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Jun 2005
Posts: 25
Hi my name is Barry.

I was diagnosed with stage 4 SCC two weeks ago. Since then I have had two consults [at Johns Hopkins and Sloan Kettering] and have done a lot of reading. Both consults recommended chemoradiation treatment. I will be meeting with both a medical and radiation oncologists at Johns Hopkins this coming tuesday.

While doing my research, I read a 6/7/04 news release that indicated a new drug [Erbitux] "in conjunction with radiation nearly doubles the survival time compared with patients treated just with radiation with relatively minor side effects". Sounds almost too good to be true!
The news release indicated that this drug was in a phase 3 trial and FDA was expected to review these trials in late 2004 and if approved the drug would be available for patients in spring/ summenr, 2005.

My questions are [1] has anyone participated in the trial and what has been their experience including side-effects and [2] does anyone have any updated information on FDA approval.

Thanks
Barry

#38777 07-09-2005 05:52 AM
Joined: Jan 2005
Posts: 191
Gold Member (100+ posts)
Offline
Gold Member (100+ posts)

Joined: Jan 2005
Posts: 191
I may or may not be of any help. I'm currently in an Iressa trial. Being part of a trial means signing up for years of "study" It was also presented to me as a drug with few side effects, but I must say that in hindsight, I've been unlucky enough to experience some of them and would say that the word "minor" wouldn't qualify at the time I was experiencing them. However, whenever you the patient are experiencing side effects, the doctors do seem to take this as an encouraging sign that the drug is working.

Being part of a study or trial also involves more testing as being part of the requirements. At the time I signed up I asked if this would involve more blood draws or other painful procedures and was told "not really more than the usual" but sometimes it certainly feels like I have more fooling around with simply because of the trial. As a patient taking a trial drug you also have to fill out paperwork every day to note the exact TIME you took the drug, and the researchers in charge of the trial will call you up regularly to keep up with the paperwork and making sure you get in for the CT scans and bloodwork.

In all honesty, when I first got diagnosed and was facing this horrible disease head on, I was willing to take on anything that would improve my life expectancy. I willingly signed the contracts to be a part of a trial. Take the time to read over the contracts and talk to your doctors. When the radiation oncologist mentioned that the researchers will follow me up for two years and then five years out, that sounded pretty encouraging at the time. Also, it sounded good just to have an extra treatment in the arsenol against cancer at the time.

Good luck to you in whichever choice you make.

Jen

#38778 07-09-2005 06:12 AM
Joined: Mar 2002
Posts: 1,140
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Mar 2002
Posts: 1,140
Likes: 1
Barry, the linked article detailes all noted side effects in the study, and includes the safety warning.

http://www.forrelease.com/D20040605/nysa014.P2.06042004233942.04295.html

I don't believe anyone on the forum has yet been treated with Erbitux. If you are the first, you can educate all of us.

For the record, I was diagnosed stage 4 with mets to nodes more than three years ago and am just fine now. Do not panic, even though the tendency is to do just that. Lots, and lots of us made it though treatment and you will too.

#38779 07-09-2005 02:39 PM
Joined: Feb 2005
Posts: 118
Likes: 1
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Feb 2005
Posts: 118
Likes: 1
Hi Barry.

I am sorry to hear of your SCC diagnosis. I participated in a Phase II trial of Erbitux. See my post under "Medications, Treatments, Procedures" in thread "No more treatment..." on June 26. I was responding to a question from Michael. There are ongoing scans and requirements, but they are not extraordinary. If I can answer further questions about my treatment let me know. You are in my prayers.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5