Anyone had Vectibix/Panitumumab?

My onc said theres nothing more she can give me to make this go away any faster. I just have to cintinue with the cream and antibiotics. She said at this point I am still dealing with 'very high toxicity'. So I'm to see her in a month if I feel well enough to try something new. She said there are still several options, none of which have this kind of side effects and she'd start me at 50% dosage to be safe. She said there's a good chance that just this one dose because it's hit me so hard has at least slowed down the tumour growth a bit and we have time and not to fret. I don't have cancer anywhere else, just the two spots, so she said I have time to get better before we deal with it again. She's going to check into if I can have it radiated again or have ablation. For now I'm just to get better and not worry.

It did make me feel a bit better.

Thanks for the support, I really appreciate it.

Jan

Bellen said:

Other options

So glad to read that there are other options for you.  Been thinking of you a lot.  I think you said you are Canadian - I am too, from Ontario.  Hoping that you get continued relief each day.  Are you starting to notice a real difference the longer you get away from the drug?  Hoping so.  All the best wishes. 

Thank you for thinking about me! I live in Alberta so, yeah, I'm a Canadian, too. Today is the first day that I really feel like it's going away. It's the first day that I haven't had more pustules coming up and it seems to be drying up. I'm quite shocked that it's taken so long. It's also not as startlingly red. I'm pretty pale and every dot was dark red so I was covered in these very noticable spots. It's not as dramatic as it was. It still burns but not as much, more like the day after a bad sunburn. Not as many little scabs on my sheets, either. Sorry, that's nasty, but it's true. I had to try to dust off as many as I could every time I turned over. There's bloodstains on my sheets and pillow case as well as on the nightgowns I've been wearing but no fresh ones in the last two days. I changed them several days ago but then got more. Right now I finally feel like I'm going to be normal again at some point. This feels like it's taken longer than it has. My poor husband keeps having to go out and get whatever I need because the cold makes it hurt and I'm not comfortable going out like I've been. Plus the doctor said I shouldn't. Anyway, it'll be over soon and we can just talk about that time I had that terrible rash.

BillO60 said:

Late to the thread.. as usual..

Jan,

I haven't read through all of your posts but I was on Panitumamab for 12 cycles (through the middle of December).  I've been on a break pending doing an ablation at the end of March.   I'd read up on Panitumamab before they started me on it.  I'd read about the skin rash but reading about it doesn't really give anyone not familiar with it the full experience. Within 5 days after the first dose my back, chest, and neck were covered in what looked like acne.  I wouldn't have even noticed if I hadn't been changing shirts in front of a mirror.  They didn't itch (at first).  Then itching on my head started.  I went through tubes of cortisone cream.  It worked, to some extent, on my face, but I didn't have enough tubes to fill up a bathtub in order to get to my back and chest.  I didn't go on the antibiotics.

Most of the time the effects would hit me the hardest from the 5th through the 10th day after treatment. Sometimes longer.  As the cycles progressed, the severity of the side effects would shift around so each cycle was a whole new ballgame.

I was also on Irinotecan, Leucovorin, and 5FU so I got the smorgasboard of side effects. 

I had mouth sores, dry skin, wrinkled skin on my fingers and hands, tiny acne on my eyelids and in my eyebrows, cuts on my fingers and feet that would spontaneously appear and would not heal for weeks at a time,  a sensation like plantar fasciitis that made it difficult to walk for awhile after lieing or sitting down for any period of time, I couldn't wear glasses at times because the pressure from the glasses (very lightweight glasses) would cause pain on the bridge of my nose, I'd get contact lesions from wearing CPAP mask, the belt I wear with the ileostomy pouch would cause chaffing, sores would appear under the ileostomy pouch (luckily no infection) but would of course itch where I couldn't scratch, etc.

After having to throw out a couple of sets of pillow cases I started putting towels over the pillows and chux on the bed in order to catch the blood and other fluids that were coming from the rash on my back and head.  My head was the worst with constant itching.  The creams they sentg me didn't work.  I used up two tubes of cortisone cream in 2 days just on my head. 

I did some research and got them to order Clobetasol Propionate Topical Solution. The problem I found with the creams is that they make a lousy vehicle for getting the actual medication to the scalp.   The Clobetasol is a liquid corticosteroid for the scalp.  A word of warning. I didn't realize that it also had a high alcohol content until the first time I used it. I think my neighbors might have heard me use a few words at high volume that they don't normally hear me use. On the bright side, it made the itching go away for awhile. 

Being liquid it does get down to the skin which the creams could not. Plus, it worked for me. At least it was better than anything else I'd tried.   I had to use it about 4 times a day.  I also used it on any patch of skin that flared up.

My hair thinned out and I was shedding like a cat in the middle of summer but I didn't lose it.  I did something that you probably can't do and that was to cut the hair on my head really short and shave as much hair off my body as I could using an electric razor. When I washed my hair I alternated between Selsun Blue (it actually tingled and helped with the itching) and TeaTree Mint shampoo I bought from a local drugstore.  While none of these cures the problem it did help relieve symptoms for short periods of time.  Tea Tree oil isn't a cure but I figure if it has any antimicrobial effects then it can't hurt.

I used Karaya paste on some of the sores on that appeared on my fingers, espeically around the fingernails which is where many seemed to show up.  It doesn't heal them but as it hardens it creates a thin shell so that they aren't causing constant pain every time I'd type on a keyboard, pick up a coffee cup, etc. It washes off easily enough.  I even tried using some on the bridge of my nose (nope, I don't get out much)  but had to be careful when taking it off since the skin felt like it has become super thin and sensitive. 

I tried various things for the mouth sores and finally just made my own mouthwash using some essential oils with a small amount of clove oil. (there's various recipe's on the net for "natural" mouthwashes). 

I bought a foot bath and started soaking my feet twice a day. The skin began cracking and thickening on the bottom of my feet and no matter how much skin cream I used it didn't seem to make much of a difference.  Besides the cracking I started developing sores (again, spontaneous) between my toes. In some ways they looked like the skin was just rubbing off. So, I used a foot bath with some tea tree oil twice a day and then used vaseline on my feet with clean socks.  It didn't keep the cuts from appearing but they were a lot less painful.

I got a few sores inside my ear (not too deep in the canal) and I used a small amount of the Clobetasol on a q-tip.

None of the hand creams I tried (and I tried several) seemed to last long. It was like my body was sucking in whatever moisture I put on it but stayed dry anyways.  For awhile it almost looked like I had no fingerprints.  I couldn't even use the finger scanner on my cellphone because it couldn't recognize my finger prints from day to day.   I bought some Nitrile gloves and would put some hand lotion on my hands and then put the gloves on for a few hours.  That helped to soften up any of the cuts that weren't healing. I tried mixing antibiotic cream with cortisone cream and usied that on my hands but I don't know if it helped or not.

Most of what I was trying to do, as far as my feet and hands were concerned, was just trying to keep the spontaneous sores from staying hard or getting larger.

It took about 4 weeks after the last chemo was complete before the sores were pretty much healed and skin started getting back to normal.  It's now been almost 3 months and the only side effect I still have is my scalp itches and I think my scalp contributes about 2/3rds of the dust to my apartment in the form of flaking.  Hair has gotten thick again and I'm not shedding.  I still use Selsun Blue and the TeaTree Mint shampoo's but so far they haven't cleared up the problem.  Ah well, at least I own a Dust Buster.

Since I haven't read all of your posts and if I'm making a suggestion that doesn't pertain to you, please ignore. Maybe soneone else down the road could use this info so it won't be a complete waste of time.

The Panitumamab worked for me.  You're right, it doesn't shrink tumors but if it works it will stablize them so they don't grow or spread. 

That is the only reason I stayed with it.

They usually gave me a dose of IV corticosteroids as part of a pre-chemo cocktail.  That generally alleviated the symptoms for a couple of days.  The day I had chemo and usually the day after was when I'd go do shopping and go out to eat. Aside from just needing to run needed errands I also enjoyed going out with full acne and  watching to see how many people would look at me like I was a leper.  I live for those moments...

Bill

Good lord Bill, that sounds like I had a walk in the park compared to what you went through. Yikes! I'm not getting it again, my onc said it's way too toxic for me. I'm taking a break now from taking anything. I'm still getting the huge hives I was dealing with for about a month or more before I got the treatment so my skin is really upset. I'm starting to suspect that it might have to do with the fact that I'm positive for lupus. I was looking at my face earlier and noticed what looks like the lupus coloration on my face. I hope the treatment hasn't set it into high gear because I haven't had an side effects from the lupus before other than hand pain.

Anyway, I appreciate the suggestions and maybe it will help for someone else but I'm done with that crap.

Jan