Previous Thread
Next Thread
Print Thread
Joined: Jan 2006
Posts: 756
Likes: 1
"Above & Beyond" Member (500+ posts)
OP Offline
"Above & Beyond" Member (500+ posts)

Joined: Jan 2006
Posts: 756
Likes: 1
There is currently a clinical trial using �Cetuximab (Erbitux) in Treating Patients With Precancerous Lesions of the Upper Aerodigestive Tract� being conducted through various hospitals in the United States and Canada.

I was first treated for SCC of the lateral tongue in 2005 and had a recurrence a year ago (see my signature for details). I developed an ulcer/sore spot in the same general area 2 months ago and had a biopsy this week. The biopsy showed moderate dysplasia. While not cancer yet, my doctor feels considering my past history, it will very likely turn into cancer at some point (and I agree with him).

My doctor gave me three options: 1) watchful waiting; 2) surgery; or 3) a clinical trial. I�m considering the clinical trial or surgery � watchful waiting is just too stressful for me!

According to the information I received so far, cetuximab, which is a monoclonal antibodies, can block abnormal cell growth in different ways. Some block the ability of abnormal cells to grow and spread, and others find abnormal cells and help kill them or carry cell-killing substances to them. Cetuximab has a low risk toxicity profile and is effective in invasive head and neck cancer. The most likely side-effects include a skin rash, fatigue and fever. It would require weekly trips to Baltimore for 8 weeks (that�s the part I don�t like since it is a 3 hour drive).

I�m considering joining the clinical trial in hopes that it will work on me and reduce or kill the abnormal cells, thus minimizing the amount of tongue tissue I will ultimately loose with surgery.

Has anyone participated in this clinical trial? If so, what did you experience? What additional questions should I ask?

Thanks for your input!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Oct 2008
Posts: 251
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Oct 2008
Posts: 251
Susan,

I am sorry to hear about this latest development, and I understand how you feel about "watchful waiting".

I wish you the best in making your decision; I know you are in good hands in Baltimore!

Thinking of you!


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
Susan

I was not in a clinical trial but did have the full 8 Erbitux treatments. IMO, Erbitux is like that nursery rhyme: [quote]When it's good, it's very very good, and when it's bad, it's horrid.[/quote] You will probably need to have someone drive you to and from the chemo TX for at least the last 4 so bear that in mind in making your decision.

My feelings are mixed on Erbitux as it did not stop my cancer from coming back and my MO decided that my tumor was resistant to Erbitux so the second time around switched me to Cisplatin. I never got the "acne rash" but I did have the worst case of radiation dermatitis my CCC has ever seen as a result of the Erbitux. That is a worse case scenario as none of the other patients getting it in my waiting room had more than the acne rash.

I was ecstatic when I was told I would not have to do the platinum based chemos and could use the new wonder drug Erbitux. Subsequently they have discovered that Erbitux simply does not work for colon cancer with some people due to their genetics. While there remains some scientific controversy on this, assessment for EGFR expression is now required for use in colorectal cancer, but not in head & neck cancer. IMO, there is a similar mechanism for head & neck cancer but there are no biomarkers or tests yet to determine the unfortunate minority like myself for which Erbitux does not work.

The odds are it will work for you, so go for it.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
amndcllns01, Jina, VintageMel, rahul320, Sean916
13,104 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,927
Members13,104
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