#93923 04-19-2009 03:30 PM | Joined: Sep 2008 Posts: 2 Member | OP Member Joined: Sep 2008 Posts: 2 | i am 2 years post treatment. i am having a lot of side affects from the new target therapy drug cetuximab approved 2006. i would like to ask if any one else has any long term problems. while having the treatment it is very common to have severe acne and it should all clear up at the end of treatment. mine how ever has returned along with hair loss. my skin specialist has diagnoised me with acne rosacre in a very rare form. my scalp is bright red and i have tiny spots with hair loss. this is very distressing as i am such a long way down the line now. i am also now experiencing itching and burning with electrical symptons up the back of my head? after seeing several consultants they believe it is a side affect from cetuximab. i was one of the first to have this drug for head and neck cancer so i am desperate to find another person that is also 2 years post treatment to compare with. i am worried what else could develop. hair loss is another confidence killer that i can do without. but the itching and electric sensations are really affecting my quality of life. please beware when offered this drug as they told me it was less toxic than cisplatin. it is definatley less toxic at the time of treatment but the long term side affects are proving to be unknown. given the choice again i would not have this drug. my face is also scared from the acne with lots of red veins? | | | | Joined: Apr 2007 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2007 Posts: 27 | I am almost 2 years post-treatment. I had both centuximab and cisplatin as part of a clinical trial. I never had acne. I did have hair loss -- signifiant thinning all over my head as well as the loss from radiation on the back of my head. My hair has grown back fully.
The condition of my mouth is my problem now. I had a severe case of mucositis and my mouth hasn't fully healed. I can eat but only bland, soft foods very slowly.
I wonder if centuximab dosage might account for the very severe, long term side-effects you are experiencing. I don't know the exact dosage I was given. If I remember correctly, it was based on my body weight.
marilyn
dx: Stage 3 T2N2aM0 Left tonsil, base of tongue, 1 left node. HPV positive. tx: Tonsilectomy (left) then Cisplatin x2, Erbitux x7, IMRT x35 Phase 3 clinical trial. Completed 6/28/07
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I had rads and Erbitux and not much reaction to my hair at all. THe mouth is my problem too. Everything has to be bland and if it isn't after the 1st bite it all taste balnd anyway. They took all of my teeth for rad seed implants in my tongue and my mouth drives me crazy with pain and the well known dryness. I agree with you about some of the side affects and I was the 1st for rad seed implants in this area. I just keep my blender firewd up and make soup out of everything but good solid food. LOL How I wish I could.Good luck
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I did have seepage from the dissection on my neck and now it's starting to get rough again after over a year of staying normal. Most of the acne is on my chin now tho.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Erbitux has been used in colorectal cancer treatment for some time. What are the long term side effects in this population? Perhaps checking with these folks may give you some ideas. It is also reasonable that with radiation/surgery the effects for H&N patients may be locally more severe. 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.
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