Anyone had Vectibix/Panitumumab?
Comments
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I hope you are feeling betterJanJan63 said:Thank you. I hate to sound
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
I hope you are feeling better since you last posted. I believe the fight and pain is worth it! Keep up the fight!
There must be something that can help with the itch and pain. You have the right to whine if you feel like it and we all understand. I feel bad for you having to go out and work when you felt so miserable.
Even though I haven't had the chemo you are on now, there may come a time when I need it. Thank you for posting about your experiences.
We all have bad days - even those who don't have cancer fight battles and struggle to survive.
I have been really lucky in tolerating the chemo so far with minimal negative side effects. There have been days with nauseau and stomach pain, a few other digestive issues, and a couple weeks of pain after my liver ablation. These all eventually passed.
It sounds like the others who have been on this medicine do better after awhile.
You have been through so much and have survived miraculously. Don't let this break your spirit.
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Leave it up. It is helpful if
Leave it up. It is helpful if someone is wondering what to expect. You make it clear that it is your experience, not everyone's. I'm not a candidate for these drugs, but I'm also not sure if I want to be after reading your experience.Glad you are getting a break. My thoughts and prayers are with you even if I don't always respond.
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Leave it up Jan. Someone may
Leave it up Jan. Someone may find it very helpful. You went through a lot and not whining just expressing yourself as to how awful it was.
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Side effects
I hope you continue to post about the side effects and anything that can possibly help with any of the side effects. It sounds like it has shown some positive results with fighting the tumours, and anyone on this site may have this as part of their treatment in the future. Jan, thank you for posting your response to this drug - I know it has not been easy for you and my thoughts and prayers are that you will get through this. I hope that, as some have said, the rash and other side effects lessen over time, and that you get positive news about the response to this treatment. This whole CRC forum has been so helpful to me, and all posts help me to have knowledge and hope. I wish more members would have suggestions for you. If there is a cream, Rx, etc that is effective for these side effects, I wish someone would post, as it is a shame to have this bad reaction, and possibly stop treatment because of this. Is there no Dermatologist Oncologist somewhere in North America who can offer info? Wishing you well and thinking of you.
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Thanks for the support
Thanks for the support everyone. I go see my onc in about an hour. I'm not going back on this treatment. I don't know why I overrreacted to it but I'm not taking the chance again. I'm still hardly able to sleep and have sores all over my face, scalp, neck, chest and upper back. They're also in my mouth, under my tongue and inside my ears. I couldn't have imagined a 'rash' could be so indescribably horrible. I'm going to have to tell her that there has to be something else. This is unacceptable. I simply cannot live this way. My skin is still burning to this day, tomorrow will be three weeks since the one treatment. It's like having been burned with acid or a chemical or a severe sunburn. It's very sensitive and is scalding all the time. But it's also itchy. The only relief at all is with Solarcain and it only takes the pain down a few notches. I am unable to finction in my life. I can't stand the cold outside, it makes it hurt. I don't care about the house or even basic care of myself because all I can focus on is the pain. I am just completely miserable. I'm still having trouble getting comfortable in bed because my ears hurt so much so I've figured out a way to sleep with my hand under the pillow by my cheek to try to take wieght off of my ears. I am back to where I can eat and brush my teeth but for over a week I could barely open my mouth. For some reason I'm having a very hard time with getting dehydrated as well. Oh, and other soft tissues are burning, too. My stoma and my crotch are on fire, too. Yup, this is awesome.
The reason why I think the thread should come down is because this is not a common reaction to this treatment and I don't want to scare anyone away from it. This does happen on occasion but isn't typical. I think I'm pretty tough. I had the initial surgery, the illeostomy, the issues after the surgery with two abcesses and a severe infection in the incision, I had the Blood clot with the stroke and cardiac arrests and then paralysis which I've mostly overcome, but I can't do this. This is too much. The pulmonary surgeon gave me only a 30% chance of surviving having the surgery to remove the mets but I'm leaning towards doing that at this point. Leaving the met to grow as fast as it is is 100% death, 30% chance og survival is better odds. Unless they can come up with something. I wish ablation was easier to get here. And why did the radiation guy say they can't radiate them again? Just do it. I'm going to die if something isn't done. I'm having a very hard tme emotionally right now. I'm so scared and have very little hope. Sorry everyone.
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Goodness sakes, girl!
If I have to come to your house and smack you, I will. Please, DO NOT EVER NEVER EVER apologise. You know why we have this forum. To vent our emotions, our worst fear. To celebrate our accomplishments, albeit sometimes as simple as a normal bowel movement. If it relates to our Cancer, then it belongs on this forum.
So, do I have to come to your house and give you a motherly telling off?
Words cannot express how much I sympathise with you. I (luckily) haven't gone through your experience, but I have gone through Hell a few times, and know how hard it is to carry on while REALLY wanting to live. Its a double edged sword.
You must do what you feel is best for your body and for your emotional state of mind. We know our decisions are a matter of life and death, but life in such misery is no life at all.
We are here for you Jan.
TRU
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Wishing you better days
Jan - Would your Oncologist consider having you admitted to the hospital so that they might be able to get this horrible reaction under control? Let us know what relief your Onco has suggested. Have there been others who have reacted this way - you really need some relief. I hope that there is some way to get it. So sorry you are going through this - my thoughts are with you. Bellen
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My onc said theres nothing
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
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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.
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Thank you for thinking aboutBellen 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.
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Continued relief?
Jan - Are you continuing to get more relief from all these side effects? Hopefully you are noticing improvement as the days go on, and now maybe the cream and antibiotics can be more effective, not having to fight the awful effects of the vectibix at the same time. Do you know whether you had the full dose of vectibix. I believe my chemo has always been reduced a bit, as my Onco had to delay it once at beginning due to low WBC. Thinking of you as you recover from this.
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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
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My dogs
My wife haa two little dogs. They were my companions throughout all my battles. They slept nestled up by me when I was feeling sick from chemo and when I was recovering from surgeries. And they stuck by me on those sad days too. My wife said they are now my dogs. As they both follow me everywhere and jump up on my lap. I do love those dogs too but don't tell anyone. ;-)
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Good lord Bill, that soundsBillO60 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
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