I'd like to hear from anyone, especially women,  on cetuximab. I'm having this in combination with Oxilaplatin and capecitabine. I've got one cycle of chemo to go after the one which started yesterday, with cetuximab weekly. I think the cetuximab continues after the chemo finishes, but I'll find that out for sure at my next oncology appointment.

The main side effects have been spots, they started on my ankles,  and my legs and bottom are worst affected with fewer on my torso and very few on my face. These are all manageable. I also have dry skin and splits in my fingers which take a while to heal, and heel cracks that take far longer to heal than when I've had them without chemo.

The leaflets tell you about the longer and curlier eyelashes but there's no mention of increased facial hair. I have mentioned this to the oncologist who didn't seem interested, but as it's not that visible from a distance he probably didn't see it. Basically, my face feels furry! I waxed my 'moustache' but that was quite painful and I don't want to do my whole face(!) and there's no way I'm shaving. Has anyone else suffered from this?

My good news is that the lung mets now can't be seen on the CT scan that I had after 4 chemo cycles and the liver met has shrunk. The mets in my abdomen have never shown on the CT scan as they're too small so I am hoping they've disappeared.

Mandy

Hi Mandy I also had Cetuximab with Oxaliplatin & 5 FU. I had no major side effects that made be particularly unwell but did have lots of skin problems. Suffered with acne on face and lots of spots on chest, arms and back, fortunately though no facial hair, not heard of that before. I know you will now be well into treatment and hope going well. Jane

Hi Jane Good to hear fom you. How many cycles of cetuximab did you have? Spots are spreading and sore but docs don't seem at all bothered. I just keep getting creams prescribed for moisturising. Mandy

Hi Mandy I had 12 weekly cycles of cetuximab during chemo. I was given antibiotics and steroid creams as the spots got particularly bad and sore on my face. Ironically the same antibiotics I have regularly as I suffer from acne rosecea anyway!!!!!! Same here the doctors not too concerned as apparently the spots were a sign that the drugs worked.

Hi all, I'm on cetuximab with FolFox regime. Second cycle is when I burst out in face spots (pretty badly) , but not ichy or sore ... more of a visual thing than any real concern. It is true that they say he worse the spots are , the better the cetuximab is working. I was put on Minocycline tablets (which I believe are normally precreibed for acne), and after week 9 of my treatments, the face is clearing up and not looking so bad. I do have rash on chest and back too, but this is also not ichy or sore at all.

After some initial face problems - dry and red skin, and a nasty rash on my upper lip, I've had very few spots on my face, which is possibly why they're not prescribing anti biotics. A rash on my arm cleared up very quickly after using an antibiotic cream so I'm going to try that on my legs. I do realise that I am very lucky that the spots are in places that can be covered with clothes.

My scan half way through treatment showed reduction in the liver tumour and couldn't see the lung mets at all. I'm now due another scan and hope that the liver tumour has continued to shrink. So the spots have got to be worth it.

Mandy

Jane

I see from your profile that you've had two liver resections. I was supposed to have one but they just closed me up again when they saw I had spots of cancer in my abdomen, and I went straight onto chemo instead.

Did you decide to have chemo for the second time? I know it's hard when it's your decision. After my lung mets were removed I was given the choice and decided to have chemo, although apparently the consultant said that if he were me, he wouldn't (he didn't say it to me though!).

I've now had chemo four times - if you include the chemo-radiation to shrink the primary tumour before surgery.

Mandy

Hi Mandy, I was doing a search on cetuximab and hair loss when I picked up your post. I've basically had every side-effect cetuximab has to offer! Hair loss is my biggest concern just now. My eyelashes are huge - so at least they distract from the hair loss. You definitely become more hirsuite. If it's any consolation the 'moustache' goes, or at least mine did after about 4 treatments. Yes, I have the fuzzy face but it's settled so is not overly obvious. Everyone notices my eyes first! I have had 6 treatments of cetuximab, so 2 more to go. I took a bad reaction last time when my face broke out in sore red patches everywhere, so the dose has been reduced, which has made a difference. I really wish you well on this journey. I am 42 and was diagnosed in February. You sound very strong and positive, which is more than half the battle and it's so good that you have positive results from the scan. Good luck