Anyone had Vectibix/Panitumumab?
Comments
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As I recall
the rash did subside after a couple of months, and I was left with just the dry skin, which has never gone away. I'm hoping it will imrpove when this treatment ends in a couple of months. Yours might go away sooner, or later- that's what 's so weird- how everyone has a different reaction to the same or similar treatment. Mine never got as bad as Phil's- I didnt get the big pustules on my nose, just a lot of small pimple looking things, so I was fortunate. What I did begin to get after a few months of treatment, and am stil getting nearly a year in, is a steriod flush- a reaction to the dexamethasone I get with each chemo treatment. It's not a rash- just warm, red skin on my face and neck. It usually starts up the day after a treatment, lasts a day and a half, then goes away, thank goodness. Good luck with your treatment on Friday-mine are every other week, too. I get my next one on Wednesday- another four hours in the infusion chair to look forward to.
Grace/lizard44
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Not looking for sympathy but
Not looking for sympathy but just wanting to update in case anyone wants to know about this stuff at some point. Today is day ten and I'm just miserable. Sorry but it's true. I can hardly sleep because it's in my ears and I sleep on my side. My ears are very tender. When I got up today I discovered that it's peeling like crazy. I just read that that's another side effect. The bits of skin are falling on my clothes, it's disgusting. No way can make up cover this up now. Under the peeling skin the pustules are still there so it's not like the new skin will look good. I'm considering wearing a surgical mask at work but it hurts so bad at the back of my ears that the elastics that hold the mask on will probably hurt. My glasses hurt when I put them on.
I am just miserable. I was crying earler and my tears burned so I had to get a tissue to dry them off because I can't wipe with my hand because I keep breaking open the pustules and they leak. Yellow stuff, clear stuff or blood. I can barely smile or even brush my teeth because my skin is cracking and it hurts terribly. Like getting a paper cut. I don't know what I'm going to do. This is horrible. The only thing that seems to soothe it at all is Aveeno. Even with it on the rash on my back and chest is very irritated and I can barely stand to have my clothes on.
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So very sorry.
I know you're not after sympathy, but you've got it from me, in spades.
This sounds so unbelievably miserable. Well, that's probably an understatement.
In my opinion, there is only so much a person can tolerate. I remember all too well, how I reached my breaking point when I was in my second to last week of radiation treatment. I talked to my Rad Onc about stopping. The pain was beyond unbelievable.
I can only suggest you talk to you Onc. He will probably tell you that it will get better, or that you are strong and will make it through, or he will suggest some other option.
Sincere thoughts.
TRU
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Jan, ironically I referenceJanJan63 said:I'm disappointed in how
I'm disappointed in how little information there is about how to deal with the rash. Apparently infection is a big concern. It sounds like it'll be around for some time so it's not going to go away any time soon. I'm horrified at the thought of having to sit at work with this crap on my face. It's crawling up my cheeks now. I deal with a number of different people every day and have no way of hiding. I keep finding myself bursting into tears at the thought of people seeing me like this. It looks dirty and creepy. It's all pimples that look like they need squeezing and there's hundreds of them. I feel disgusting. I'm actaully considering quitting my job because I can't imagine having to deal with the humiliation every day. Losing my hair would be easier because at least people know what that's about. This just look like I have some hideous illness. People will be creeped out to see it. I'm creeped out about it. I'm so upset. With all the crap I've been through with the cancer and the blood clot I never had to feel like I need to hide away like the elephant man. Now I do. I have a car that draws attention and now I don't even want to drive it because someone will look at me and wonder why someone so hideous is driving a car like that. Sorry to anyone reading this. I am just horrified with this and don't know what to do. This is horrible. I read that the numbers for this treatment working actually get skewed because people go off of it because of the rash. They can't sleep or cope. Some can barely take care of themselves because it gets on their hands and the hands crack open. I am just beside myself right now.
Jan, ironically I reference he elephant man when I explain what I feel like with the hernia on my right side that looks like I swallowed a baby. Loose clothes and layering handle it mostly, but it's hard to layer much in sunny SoCal, so I just ignore people's looking and hope for a Sept. fix. I know your issues are exponentionally tougher, so I can only imagine the frustration. I hope the drugs do the job, your skin heals, and you get this behind you. Your ability to express both your deepest vulnerability and courage in the face of that which keeps getting thrown at you is, to me, and, no doubt many others, inspiring. Even if that's not what you were intending....................................Dave
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Thanks Dave. Having a reallybeaumontdave said:Jan, ironically I reference
Jan, ironically I reference he elephant man when I explain what I feel like with the hernia on my right side that looks like I swallowed a baby. Loose clothes and layering handle it mostly, but it's hard to layer much in sunny SoCal, so I just ignore people's looking and hope for a Sept. fix. I know your issues are exponentionally tougher, so I can only imagine the frustration. I hope the drugs do the job, your skin heals, and you get this behind you. Your ability to express both your deepest vulnerability and courage in the face of that which keeps getting thrown at you is, to me, and, no doubt many others, inspiring. Even if that's not what you were intending....................................Dave
Thanks Dave. Having a really bad day with this today and your words really touched me.
Hugs,
Jan
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Thank you. I've been cryingTrubrit said:So very sorry.
I know you're not after sympathy, but you've got it from me, in spades.
This sounds so unbelievably miserable. Well, that's probably an understatement.
In my opinion, there is only so much a person can tolerate. I remember all too well, how I reached my breaking point when I was in my second to last week of radiation treatment. I talked to my Rad Onc about stopping. The pain was beyond unbelievable.
I can only suggest you talk to you Onc. He will probably tell you that it will get better, or that you are strong and will make it through, or he will suggest some other option.
Sincere thoughts.
TRU
Thank you. I've been crying since I got up. This is terrible. My scalp is bumpy with pustules and if I forget and scratch them they weep out a bunch of fluid and sting like crazy. When I woke up today my hair was glued to me ear with dried guck then when I removed my hair my ear started bleeding. I caught a cold from my husband so my throat is really sore and my nose is stuffy and it hurts terribly to blow it and the skin cracks. And the hives I was getting just before all this started have come back. My whole body is itchy and my skin is irritated everywhere. I couldn't have imagined how horrible a rash could feel. I'm off work today and trying to figure out if I'm eligible for some sort of employment insurance but when I call them it goes through a bunch of numbers to press and then says the call vlume is too high and cuts off the call.
I just can't fathom how bad this is. I sure hope its as bad for my stupid tumour.
Jan
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Oh, Jan, that sounds horrible!
I'm so sorry you're having such an awful reaction. Have you tried calling your oncologist's office to ask if there's anything they can do for you or any suggestions they can offer? You shouldn't have to suffer that much misery, and I'm sure the stress of delaing with it isn't helping your overall health. Don't let that cold turn into something more serious- that is something you probalby should let the doctor know about, especially with your compromised immune system. I do hope it gets more tolerable. You'll be in my thoughts.
Grace/lizard44
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Thanks Grace. I see my onc onlizard44 said:Oh, Jan, that sounds horrible!
I'm so sorry you're having such an awful reaction. Have you tried calling your oncologist's office to ask if there's anything they can do for you or any suggestions they can offer? You shouldn't have to suffer that much misery, and I'm sure the stress of delaing with it isn't helping your overall health. Don't let that cold turn into something more serious- that is something you probalby should let the doctor know about, especially with your compromised immune system. I do hope it gets more tolerable. You'll be in my thoughts.
Grace/lizard44
Thanks Grace. I see my onc on Thursday morning. Hopefully there's something more they can do for it. At this point I just take the antibiotics and use anti itch lotion and a moisturizer. I keep thinking about my onc and nurse describing it as like teenage acne. Boy, did they ever underestimate it.
I didn't go to work today and I'm not going for the rest of the week. Until I can figure out how to manage it I need to be around whatever products I have that will help. It changes throughout the day. It's peeling, then it's not peeling so much but it's all red, then it's weeping, then it's doing something else. I try to reduce stress in my life but this has me very, very stressed. I can't afford to miss work like this.
Jan
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Thank you. I hate to soundPamRav said:So sorry
I am so sorry you have to go through this.
Wish I had some help to offer , unfortunately I do not. I just wanted you to know youre in my thought and prays.
Thank you. I hate to sound like a whiner after some of the crap having cancer has put me- and all of us- through. But I'm wondering if this is worth it. It's actually that bad. The itching and burning are driving me insane. I sat and cried today and my dog sat at my knee just looking up at me with his big, sad eyes. When I'd look at him hed wag just the very end of his tail. He doesn't know what to do, he just knows his mommy is upset.
Jan
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Okay, I'm going to try to
Okay, I'm going to try to post a couple of pictures. The better one is me last Saturday, so 5 days ago. I had the rash but could cover it with make up. The bad one is today. Here goes...
Okay, I have no idea how to do this. I'm so computer illiterate. Ugh.
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PicturesJanJan63 said:Okay, I'm going to try to
Okay, I'm going to try to post a couple of pictures. The better one is me last Saturday, so 5 days ago. I had the rash but could cover it with make up. The bad one is today. Here goes...
Okay, I have no idea how to do this. I'm so computer illiterate. Ugh.
Are you using Photobucket or something like that?
I have used Photobucket. Whichever, you need the link to the picture and then paste it in the box that pops up when you hit the TREE icon in the bar at the top of the text bar. It seems you have to add an Image Description and/or Title.
Give it a whirl, as we all want to see the pictrues.
TRU
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A bit of an update. What I've
A bit of an update. What I've found that works so far is this. Only use the cream they prescribed me once a day before bed. It's called Hyderm and is a hydrocortisone cream. Don't slather it on several times a day like I did instead of reading the label and following directions.
Use baby shampoo if you have the sores in your hair. Shampoo burns. My hair is full of scabs and is nasty.
Don't even think about using make up. It just irritates things and getting it off irritates the skin and when this rash gets irritated, or even when it's not, anything you put on it BURNS. During the day I'm using anti-itch lotion, a Life brand product but Aveeno also helped. I prefer this stuff, though. Then I wait for a few minutes and put a moisturizer over that. Something non irritating. I've used both Nivea and Vaseline Intensive Care Repair. Both work about the same.
Ihave to admit to sometimes squeezing the 'stuff' out of the pustules when they get particularly big. It doesn't seem to help much but it makes me feel better. Don't know yet if that will be an issue but infection is always a concern with this so it's probably not a great idea.
Another thing I've started doing is to either lie in a bath with a facecloth over my face or wet one and hold it to the bad areas for several minutes. It seems to soften it up and then I use the facecloth to carefully wash the area which gets rid of some of the pustules.
As of today it's starting to go away. Some of the pustules are actually falling off whole and there's new skin underneath. Out of hundreds of them it's not making much of a difference, though. Another week and I might be able to go out in public without being ashamed of my disgusting face. Unfortunately, I have another treatment tomorrow. I see my onc for the rash this afternoon and I'll update with any news.
It burns and itches almost ceaselessly no matter what I do. I could barely sleep last night because it feels like my face is being burned with acid. It's worse if I leave it and don't use some sort of cream, though. I wish I had better news for anyone new to this.
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So here's the latest. I'm not
So here's the latest. I'm not sure any of this is helpful to anyone who might go on this in the future but who knows. The doctor was shocked by how bad it is. So I'm not getting the treatment tomorrow. I have to go see ther again in a week and she'll decide when I start treatment again and it will likely be a at a lower dose. She thinks that what's happened is that I already had the hives and my skin was still 'angry' and it totally overreacted to the new chemo. I'm not supposed to do anything that might upset my skin. No soap, no shampoo, no anything. I'm to let it settle down. She said I should be off work next week as well. My boss is going to love that. So is our bank account. Oh well.
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Good moveJanJan63 said:So here's the latest. I'm not
So here's the latest. I'm not sure any of this is helpful to anyone who might go on this in the future but who knows. The doctor was shocked by how bad it is. So I'm not getting the treatment tomorrow. I have to go see ther again in a week and she'll decide when I start treatment again and it will likely be a at a lower dose. She thinks that what's happened is that I already had the hives and my skin was still 'angry' and it totally overreacted to the new chemo. I'm not supposed to do anything that might upset my skin. No soap, no shampoo, no anything. I'm to let it settle down. She said I should be off work next week as well. My boss is going to love that. So is our bank account. Oh well.
I am happy to hear you are geting a chemo break. Give you skin time to recover. Money is money. Can't live without it I know, but your health is more important.
TRU
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A break will be goodJanJan63 said:So here's the latest. I'm not
So here's the latest. I'm not sure any of this is helpful to anyone who might go on this in the future but who knows. The doctor was shocked by how bad it is. So I'm not getting the treatment tomorrow. I have to go see ther again in a week and she'll decide when I start treatment again and it will likely be a at a lower dose. She thinks that what's happened is that I already had the hives and my skin was still 'angry' and it totally overreacted to the new chemo. I'm not supposed to do anything that might upset my skin. No soap, no shampoo, no anything. I'm to let it settle down. She said I should be off work next week as well. My boss is going to love that. So is our bank account. Oh well.
for your skin- I don't know how much longer you could have put up with what you were experiencing without going bonkers. It's bad that you have to be off work, but as Trubrit said, your health is more important right now and hopefully your boss will understand that. I hope you get some relief and rest while on your chemo break- you definitely deserve some.
Grace/lizard44
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Thanks you guys. She said my
Thanks you guys. She said my immune system is completely overwhelmed and I'm not to go anywhere I don't have to. I'm sick right now, too, with some sort of upper respiratory thing. Maybe that's why I got it. Other than cancer I'm rarely ill. Anyway, hopefully I'll stop looking like a monster soon. In the waiting room, we waited 2 hours to see the doctor, I noticed people not wanting to sit near me. One guy had to because it was the last seat but when someone else moved he got up and moved to their chair.
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People not wanting to sit near youJanJan63 said:Thanks you guys. She said my
Thanks you guys. She said my immune system is completely overwhelmed and I'm not to go anywhere I don't have to. I'm sick right now, too, with some sort of upper respiratory thing. Maybe that's why I got it. Other than cancer I'm rarely ill. Anyway, hopefully I'll stop looking like a monster soon. In the waiting room, we waited 2 hours to see the doctor, I noticed people not wanting to sit near me. One guy had to because it was the last seat but when someone else moved he got up and moved to their chair.
may have its advantages- they won't get close enough to spread their germs to you, and with your immune system overwhelmed as it is that's a good thing
Take care of yourself and don't take any chances of getting sicker.
Grace/lizard44
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Nothing is pointless and...JanJan63 said:Thanks. Does anyone know how
Thanks. Does anyone know how to take this thread down? It ended up not being helpful in anyway and is pointless other than my whining.
Thank you!
you are not whining.
Leave it up. You never know when someone will hook into it and it will be exactly what they need.
If you are really serious about deleting it, you can contact CSN mods.
TRU
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