Anyone had Vectibix/Panitumumab?

JanJan63

Colonchick said:

I'm sorry to hear and sending

I'm sorry to hear and sending positive thoughts your way!!!

Thank you. It's not bad, just

Thank you. It's not bad, just quite unpleasant. I'm only posting about it for someone who might want to know at some point, not to gain sympathy. It is what it is, we all go through crap to varying degrees and at various times. This is a board for information so I want to share this part of being on this treatment.

Jan

JanJan63

Update for future reference.

Update for futire reference. Day four. Rash is all over my chest and neck and is mostly made uo of tiny red dots. Some are eroptions like tiny whiteheads. My chin, besisde my nose and my forehead have become worse as the day has progressed. It feels like I have something stuck on my skin because there are so many. Most are tiny whiteheads. They look angry and irritated. I'm using the cream I was prescribed but at this point it's just getting worse. Totally looks like teenage acne like they said. I never had it as a teenager so I guess now it's my turn. The rest of my skin that's not affected seems very sensitive. It almost hurts to rub my scalp and brush my hair. No idea if this is another part of it. 

Phil64

JanJan63 said:

Phil, thank you so much for

Phil, thank you so much for your reply! They said the skin rash would get less and less as time goes by. You didn't find that was the case? I have a CT scan booked for May 3 and then we'll see if it's working. Wow, I hope I get as good of results as you did! My onc said it could shrink the tumour by 60%, not that it could get rid of it altogether. Of course, as we all know, treatments don't necessarily work the same for everyone. But thank you for giving me hope! Hope is the greatest gift someone can give us, after life.

At the moment I'm finding that my scalp is itchy but if I scratch it my skin is tender. The corners of my nose hurt like when I've had a bad cold and have blown my nose until it's raw. Not terrible but not pleasant, either.

And thank you so much for the tip about moisturizing. I thought it was best to just leave it alone but the skin feels very tight like it's dry and a moisturizer would feel better for sure.

Thanks again so much!! You have given me a reason to feel hopeful and I appreciate that more than I can say. I'm crying with gratitude right now. We women are like that, you know.

Hugs Phil! Thank you so much!

Jan

Jan, 

Jan, 

I did find that it lessened as time goes by. And for sure use lots of moisturizer, multiple times per day. The Sams club coconut oil 2 packs were nice as they were large and not too expensive.

In my case there was a huge reduction in tumor sizes. This was followed by aggressive surgery where 40% of my liver was removed (that was the third liver resection). The recurrences happened in close proximity. My surgeon decided to take a larger resection in hopes of removing microscopic cancer tumors, in addition to the three that were detected. 

That final liver resection was then followed by 12 monthly Erbitux treatments in hopes of eradicating any additional cancer cells. My reading about Erbitux was that it alone didn't actually kill the cancer cells; however my oncologist believed otherwise and he was certainly privy to more information than I could even hope to peruse. 

I do hope that the Erbitux will wreck havot on your cancer. 

I will share a couple of my blog posts related to Erbitux. Perhaps they will give you some better sense of how this did affect me.

https://pscamihorn.me/2013/02/14/valentines-day-02142013/

https://pscamihorn.me/2013/02/16/good-news-update-02162013/

https://pscamihorn.me/2013/06/20/treatment-6-06202013-update/  <= really funny one. 

Fast forward in time...

https://pscamihorn.me/2016/02/11/t-minus-one-02-11-2016-update/

The final Erbitux treatment...

https://pscamihorn.me/2016/02/26/no-regrets-02262016-update/

 

JanJan63

Phil64 said:

Jan, 

Jan, 

I did find that it lessened as time goes by. And for sure use lots of moisturizer, multiple times per day. The Sams club coconut oil 2 packs were nice as they were large and not too expensive.

In my case there was a huge reduction in tumor sizes. This was followed by aggressive surgery where 40% of my liver was removed (that was the third liver resection). The recurrences happened in close proximity. My surgeon decided to take a larger resection in hopes of removing microscopic cancer tumors, in addition to the three that were detected. 

That final liver resection was then followed by 12 monthly Erbitux treatments in hopes of eradicating any additional cancer cells. My reading about Erbitux was that it alone didn't actually kill the cancer cells; however my oncologist believed otherwise and he was certainly privy to more information than I could even hope to peruse. 

I do hope that the Erbitux will wreck havot on your cancer. 

I will share a couple of my blog posts related to Erbitux. Perhaps they will give you some better sense of how this did affect me.

https://pscamihorn.me/2013/02/14/valentines-day-02142013/

https://pscamihorn.me/2013/02/16/good-news-update-02162013/

https://pscamihorn.me/2013/06/20/treatment-6-06202013-update/  <= really funny one. 

Fast forward in time...

https://pscamihorn.me/2016/02/11/t-minus-one-02-11-2016-update/

The final Erbitux treatment...

https://pscamihorn.me/2016/02/26/no-regrets-02262016-update/

 

Thank you Phil, I read them

Thank you Phil, I read them all. At this point the rash on my nose isn't like yours got to be. Wow, that's sad. I can't imagine going anywhere like that, either. I'm getting this because they can't do surgery on me and they're hoping this will at least reduce the size of the tumours and maybe I'll be on it as a maintenance thing. Coincidentally, my oncologist has the same name as yours.

I'm starting the antibiotics they gave me for this today so we'll see if that helps at all. The cream seems to do nothing. I'm having trouble sleeping because my ears hurt with it. It feels like a sunburn. Its itchy but if I scratch it it hurts. It's on my scalp as well. I'm going to try some make up to see if I can at least tone down the look of it. I have a few days off work so I can experiment a bit. I work as a receptionist in a dental office so I have to be at work and see a number of new people every day. No way I can hide out, unfortunately.

Ugh, it feels like something is plastered over my chin, lips and nose. I feel like I want to just take my fingernails and rip away at it. And squeeze the little zit looking things. So far I've managed to leave it alone. I hope it gets to be less. This is awful. At least nothing until now made me embarassed to go out anywhere.

JanJan63

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.

JanJan63

Okay, I'm over my tirade from

Okay, I'm over my tirade from a couple of hours ago. I just had a bath and am broken out in the hives I've also been dealing with before this current rash. At first I cried and then I started seeing the humourous side in this. Or maybe the ironic side. Maybe this is a life lesson. I've been very happy that at 53 years old, 54 next month, I have pretty much no wrinkles. People who know my age will ask me if I've had work done. I haven't. And I've really never taken care of my skin. It's just genetics and I've been lucky. It's something that I've been proud of even though I have no reason to be, I haven't done anything special that resulted in this. So this rash is going to teach me humility. I didn't get wrinkles by sheer luck and now I'm getting an ugly rash by sheer luck.

I actually thought of Job in the bible. At one point her suffered with pustules or boils. I don't have that but this feels bad enough. And will it shake my faith? No. I had a weird experience a couple of years ago after my cancer surgery that I have shared with only one person on here because it may be looked at oddly. But I'm going to share it now. I was feeling cocky after the surgery and was doing things like posting in a horse related group I used to go on about how cancer is from hell and basically that I cheated the devil after going through the radiation, chemo, surgery, abcesses, and the incsion infection. Then one night I dreamt of the devil. He was standing in front of me and said to me "oh, I'm not done with you yet". I woke up very upset and feeling like it was very real. 

Not long after I had the blood clot that almost killed me. So now I feel a bit like Job. There have been other medical issues that I don't go into, money issues, job issues, so many other things, and now this. Forgive me for comparing myself to such a man as Job was but maybe I can compare just a little? The point is that 'this, too, shall pass' and it will only make me tougher. And my faith will not be shaken.

Love to all of you. We're the toughest of the tough, keep up the good fight. I wish you all strength and, most of all, hope.

Jan

Trubrit

JanJan63 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.

 This just look like I have some hideous illness. 

Well yeah, its CANCER.  I think that IS a hideous illness. 

You should wear a T Shirt

I've got Cancer and I look like ****

I am so terribly sorry you are going through this. No matter what people say, how you look is important to how you feel. 

Now I'm going to read your other post. 

TRU

Phil64

Jan, I hear you. And I

Jan, I hear you. And I sympathize with what you're going through. And a line from a song comes to mind... "when you're going through hell, keep on going."

Also, there are dumb people out there. Please don't take them too seriously. And PLEASE don't let them make you feel bad. You just keep on going. And this too shall pass.

Love and Light to you today.

Annabelle41415

I'm so sorry

I'm sorry to hear all that is going on.  Please continue to be strong in your faith as sometimes it can get you through the most difficult times.  Hoping that things improve for you.

Kim

JanJan63

Annabelle41415 said:

I'm so sorry

I'm sorry to hear all that is going on.  Please continue to be strong in your faith as sometimes it can get you through the most difficult times.  Hoping that things improve for you.

Kim

Tahnk you Kim, I appreciate

Tahnk you Kim, I appreciate the support.

Jan

JanJan63

Okay, back to the point of

Okay, back to the point of this thread which is to help anyone in the future who might want more information on this treatment. Last night in the middle of the night I woke up to the rash being unbelievably itchy. I had to scratch it as carefully as I could. I coulsn't sleep because of the itch and because I could feel that my chin was wet so I got up and used tissues I'd run under cold water and hed them against my chin. It felt a bit better. The pustules were now weeping a clear liquid, or the white stuff was coming out, or they were bleeding. Most are still there but many had broken open. I used the Rx cream on them which didn't help. So then I put Niveo on which is what I've been using as a moisturizer. Still terribly itchy. So then I decided to try Aveeno anti-itch lotion. I used it on my neck first because I had no cream on there and it helped alot immediately. I put it on my chin which already had the two creams on and it did help somewhat. Enough that I was able to get back to sleep and slept for the rest of the night.

This morning my chin is a mixture of still the small pimple/pustules, scabs, dry skin that's flaking off, and red, irritated skin. It's not as itchy as it was in the night. I'm going to say that this is more like excema than anything else. I've had it before and got the little pustules that weep fluid. Nothing to this extent but very similar in nature.

So, Aveeno does work for itchiness and it didnt sting when I put it on. I was worried it would.  

Trubrit

Try Witch Hazel

It worked like a dream on my rear-end when it was weeping and itchy. I know your rash is different than my radiation rash, but I bet it would be worth a try.  Pass it by your Oncology nurses or Doctor first if you would like. 

I know you're not after sympathy, but you have mine , 100%. 

Cyber hugs!

TRU

JanJan63

Trubrit said:

Try Witch Hazel

It worked like a dream on my rear-end when it was weeping and itchy. I know your rash is different than my radiation rash, but I bet it would be worth a try.  Pass it by your Oncology nurses or Doctor first if you would like. 

I know you're not after sympathy, but you have mine , 100%. 

Cyber hugs!

TRU

Thanks! I'll check that out!

Thanks! I'll check that out! I was expecting the Aveeno to burn but it was soothing. I've used it on other itches and had it sting. What the heck is witch hazel, anyway? I'm going to Google it.

Trubrit

JanJan63 said:

Thanks! I'll check that out!

Thanks! I'll check that out! I was expecting the Aveeno to burn but it was soothing. I've used it on other itches and had it sting. What the heck is witch hazel, anyway? I'm going to Google it.

Witch Hazel

Its a beautiful little plant called the Witch-Hazel (HA!) that has been used for centuries as a natural medicine.

I buy mine as a liquid astringent but you can buy little pads as well. I like to buy organic.   - Oh how funny. I first spelled it ASStringent -

TRU

JanJan63

Trubrit said:

Witch Hazel

Its a beautiful little plant called the Witch-Hazel (HA!) that has been used for centuries as a natural medicine.

I buy mine as a liquid astringent but you can buy little pads as well. I like to buy organic.   - Oh how funny. I first spelled it ASStringent -

TRU

Ha ha! I looked it up, it

Ha ha! I looked it up, it sound promising. Should I start a new thread and only include what has worked for me? I'm using make up to cover it up right now which kind of helps from far away. I have 3 types to try this weekend before I go back to work. So far the first two have been good.

I want someone to be able to find information on what helps with the rash and what not to do to help someone else.

Trubrit

JanJan63 said:

Ha ha! I looked it up, it

Ha ha! I looked it up, it sound promising. Should I start a new thread and only include what has worked for me? I'm using make up to cover it up right now which kind of helps from far away. I have 3 types to try this weekend before I go back to work. So far the first two have been good.

I want someone to be able to find information on what helps with the rash and what not to do to help someone else.

Each to his own...

is a saying I like.  

So personally, I would run as far away from makeup as I possibly could. I know, I know, you look horrible, but girl, what chemicals are in that makeup?   Just my tuppence worth. Like we say, you do what makes you most comfortable.  Heck, I've been eating donuts this morning, and there are folks who would say, SUGAR - run as far away.......   

I would give the Witch Hazel a try though. It may sting, but its supposed to. Burn no, sting yes. 

Get a good quality one. Or like I said, the pads are handy.

As for a new thread, thats up to you to decide. We'll roll with whatever you do. 

TRU

lizard44

Sorry you're going through this, Jan

I've been on  Erbitux and Irinotecan since April 6, 2016 and remember the rash only too well.  It was  nasty and itchy but eventually went away and was replaced with unbelievably dry skin, which I still have.  The   doctor  gave me Clidamycin to help with the rash but that worked for only a short while. I  wrote about it  and posted a pic of the rash on my blog, which may have some info you can use. http://roosterhen.blogspot.com/2016/05/ive-got-you-under-my-skin.html

My main problem now is  some  nail involvement ( ingown toenails and  scaly, ridged fingernails), and  the dry skin. I'm using a combination of Aveeno lotion on most of my body and a mixture of shea butter and emu oil on the extrememly dry patches and on my feet which I keep covered in socks at all times, and wear sandals all the time because of the sore toenails. Not  much fun in the winter and I look more like a nerd than ever. :-) When I take my clothes off,  a snow flurry of dry skin starts  flying about. One of the most recent developments is  having the skin crack on my fingertips-  it makes cooking or   squeezing lemons, etc. quite  difficult.  I've found that  slathering on the shea butter then  putting on   latex gloves helps more than anything- I even sleep in them. After a couple of days of the glove regimen, the cracks heal and I can  go without the gloves for awhile.

You mentioned the hives-  I got them too but the doctor  and I decided  they were probably caused by the doxycline she had prescribed for the rash.  Once we stopped that, the hives went away.

Anyway, I hope your  treatments go well enough that you can continue them without too many complications and too much discomfort.   The Erbitux and Irinotecan have worked very well for me so far, I hope they work as well for you.

Grace/lizard44

 

 

JanJan63

lizard44 said:

Sorry you're going through this, Jan

I've been on  Erbitux and Irinotecan since April 6, 2016 and remember the rash only too well.  It was  nasty and itchy but eventually went away and was replaced with unbelievably dry skin, which I still have.  The   doctor  gave me Clidamycin to help with the rash but that worked for only a short while. I  wrote about it  and posted a pic of the rash on my blog, which may have some info you can use. http://roosterhen.blogspot.com/2016/05/ive-got-you-under-my-skin.html

My main problem now is  some  nail involvement ( ingown toenails and  scaly, ridged fingernails), and  the dry skin. I'm using a combination of Aveeno lotion on most of my body and a mixture of shea butter and emu oil on the extrememly dry patches and on my feet which I keep covered in socks at all times, and wear sandals all the time because of the sore toenails. Not  much fun in the winter and I look more like a nerd than ever. :-) When I take my clothes off,  a snow flurry of dry skin starts  flying about. One of the most recent developments is  having the skin crack on my fingertips-  it makes cooking or   squeezing lemons, etc. quite  difficult.  I've found that  slathering on the shea butter then  putting on   latex gloves helps more than anything- I even sleep in them. After a couple of days of the glove regimen, the cracks heal and I can  go without the gloves for awhile.

You mentioned the hives-  I got them too but the doctor  and I decided  they were probably caused by the doxycline she had prescribed for the rash.  Once we stopped that, the hives went away.

Anyway, I hope your  treatments go well enough that you can continue them without too many complications and too much discomfort.   The Erbitux and Irinotecan have worked very well for me so far, I hope they work as well for you.

Grace/lizard44

 

 

Thanky you for the

Thanky you for the information Grace. I already had the hives before the new 'chemo' so it's not related but I don't think having this now is helping with the hives. My docotr said the hives can just show up for anyone at any time and it makes the skin angry and then it becomes sensitive and allergic to things it's not actually allergic to. I was taking pills for it and it had stopped but now it's back. So I guess my skin is angry again.  

Do you know if the lingering dry skin is common? I can live with issues elsewhere on my body but having my face involved when I have to greet people and be near them all day is stressful. I'm watching for people to drops their eyes a bit and look at the rash and then I feel obligated to say something. I don't want anyone thinking I'm contagious.

lizard44

Jan, I don't know how common

Jan, I don't know how common lingering dry skin is,  but I've had it throughout this Erbitux treatment. I did find a product line  that has worked wonders on my face,  Lindi Skin products. It's very pricey, but you might want to check it out, and they do have a sample pack  of products you can buy for $30. According to their website, the skincare products were developed  specifically for  chemo and radiation patients, and as I said,  the  face products   are really good- at least they have been for me.

Grace/lizard44

 

JanJan63

lizard44 said:

Jan, I don't know how common

Jan, I don't know how common lingering dry skin is,  but I've had it throughout this Erbitux treatment. I did find a product line  that has worked wonders on my face,  Lindi Skin products. It's very pricey, but you might want to check it out, and they do have a sample pack  of products you can buy for $30. According to their website, the skincare products were developed  specifically for  chemo and radiation patients, and as I said,  the  face products   are really good- at least they have been for me.

Grace/lizard44

 

Thank you for the information

Thank you for the information! I'll check that out! Do you remember if it gradually gets better or flares up again every time you get another treatment? Mine seems to have settled down but is spreading slowly up my cheeks and on my forehead and nose. I think I can handle emotionally everything but my nose. Is it less of a reaction every time? Does it flare up again? How does it proceed? I'm wondering what I can look forward to after the next treatment which is this Friday. I'm getting them every two weeks.

Thank you!