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Anyone had Vectibix/Panitumumab?

JanJan63's picture
JanJan63
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Got my CT scan results today. It was quite the reality check. Apparently I've been living in a fool's paradise and it was time to hear the truth. I was convinced the spots in the lung that had the blood clot were scars. One has decided to start growing quickly and has doubled in size in three months. Also, my CEA has gone up to 5.9. It's never been above 2.

So I start the above treatment on Feb 10. It's given by intravenous at the cancer clinic in the chemo lab. She says its not chemo but it still will have some side effects with a rash being the most likely. Apparently it's like a teenager's acne and will be on the face so as someone working with the public that's going to be wonderful.

Has anyone had any experience with this?

Thanks!

Jan

NewHere's picture
NewHere
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Sorry to hear about this J.J.  I have not been on those drugs, so cannot comment.  My thoughts are with you.  

JanJan63's picture
JanJan63
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Thanks. The onc says this stuff is 60% effective and chemo would have been 80%. I'm having a real internal battle right now with being sad and upset and being angry. I also have a kidney issue that's going to have to be dealt with. Just feeling crappy right now...

Canadian Sandy's picture
Canadian Sandy
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Joined: Jul 2016

Sorry Jan.....not good news but the treatment should help. I also have  kidney cyst, they are keeping an eye on it and so far it hasn't grown. you are a strong person so just keep on being positive. 

JanJan63's picture
JanJan63
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Thank you Sandy!

Trubrit's picture
Trubrit
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I am SO SO VERY sorry to hear this news.  

The horrors of Cancer is that it can turn on a dime.  I don't think you were living in a 'fools paradise', you were living positivly and that is a good thing.  Face this new challange without looking back and thinking 'What if?'. 

I have read many here who have had the rash. Phil64 is one of them, though he has not posted for a while.  I'm sure others will post soon with their advice on how to deal with it. 

Do you still have your port? Can they not use a port? 

You are in my thoughts and prayers. 

TRU

DTrout
Posts: 3
Joined: Feb 2017

i am currently on vectibix, and yes there will be a rash. Mine was mainly from scalp to knees. They told me to NOT use an astringent as you would for acne. You should moisturize The bumps on my scalp got quite painful and sensitive. They say the worse the rash the better it's working. And mine eventually plateud and lessened. 

JanJan63's picture
JanJan63
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Thanks for the responses! Did the rash get less as time went by DTrout? They said it will.

Tru, I had my port removed last year when it started coming out through my skin. I found that it was still painful to get poked anyway and the cream that's supposed to numb it didn't work at all. My biggest regret right now is that I didn't get the stent for my kidney when I should have. Now they don't know if it can be saved. But I wanted to wait to see if I really needed to have one. Well, that answer is loud and clear now.

Ugh, stupid cancer. How I hate you...

Jan

DTrout
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Joined: Feb 2017

yes it did after a couple months. But it was definitely no fun in the meantime. Not that any of this is. Going up Monday for treatment #12 of folfiri and vectibix, had 12 treatments of folfo with about a three month break in between next cycle. Went from being in remission after my hemicolectomy to stage 4 with peritoneal mets In about 8 months AFTER 6 months of folfox

BrianChristopher
Posts: 23
Joined: Feb 2017

Prayers for you Jan

blessed39's picture
blessed39
Posts: 88
Joined: Dec 2016

Dear JanJan63.

Dear impactzone. If you would be interested in reading my story "How I Beat Stage Four Colon Cancer" just go to my page

blessed39 and click on blog and my story will come up. I don't give medical advice, just what worked for me. God bless

blessed39

Takemeom
Posts: 14
Joined: Jan 2015

third phase treatment with vectibix, my cea went from 25 to 5 and creeped back up to 12 my doc wants to add irenotecan 1/2 dose , which in my reading doesnt do anything significant, i am worn out from 5 years of treatment, anyone doing both drugs? it sounds awful and maybe id be better off feeling good for a while, and how long is that while? for vectibix, my eyelashes have grown crazy, i had to have my friend trim them!

JanJan63's picture
JanJan63
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Thanks for all of your support. I had the first treatment today and didn't have any reactions in the chair so next time they can do it in half an hour instead of an hour. My husband is heading out to get my prescriptions for the rash in case I get it. 90% of people get it, it just to varying degrees.

The IV insert wasn't too bad. She suggested I drink more beforehand next time so I'm hydrated but we're an hour drive to the cancer centre and I don't want to have to stop to go to the bathroom in a gas station rest room. Nobody told me that the parking lot is closed and under renovation for the next three years. My daughter took me in her big truck and there was nowhere to park it as there is just a parkade. The parking lot was always full and held hundreds of cars so I don't know what people are doing now.

Anyway, the first treatment is done and I feel better knowing that I'm doing something proactive to deal with the cancer. I'm exhausted because of the stress, though. It always tires me out.

And while I was typing this my husband had a dozen roses delivered to the door. He also cleaned the house yesterday.:)  

mokomapa's picture
mokomapa
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Joined: Jan 2010

Jan,

Glad to hear the first treatment wasn't too bad.  Just wanted to let you know I was thinking about you today.  Enjoy those roses!!!

Tom

Trubrit's picture
Trubrit
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Don't know how many to go, but one down is good. 

I hope that you have a comfortable, sleep filled night. 

We're thinking of you. 

TRU

JanJan63's picture
JanJan63
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Thank you so much. I love how happy and healthy you look in your picture. I have a suspicion I'll be on this for some time and maybe maintenance for a longer time. Just a gut feeling.

JanJan63's picture
JanJan63
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I'm posting this in case at some point someone looks it up on here and wants the information. There doesn't seem to be any information on this treatment on here. 

My first treatment went fine. It took an hour. Because I had no side effects during the treatment- swelling of lips and other allergic reactions- it will take just half an hour next time.

Today is the third day after the first treatment and I believe I'm deveoloping the rash. My upper chest is sprinkled with small red dots. It's just a discolouration at this point and it's not bothersome or itchy. I also have a couple of spots that feel like skin eruptions so I used the cortizone cream I was prescribed last night and will again this morning.

I hope it's true that if you get the rash it means the stuff is working. Then if I get it bad I'll at least have that to make me feel better about it.

JanJan63's picture
JanJan63
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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. 

Trubrit's picture
Trubrit
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He had the rash and may be able to suggest something.  It sounds truly awful!

TRU

Phil64's picture
Phil64
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Jan, Sue just messaged me. I'm so sorry you are dealing with the ugly rash. I think you already know that I too had pretty severe rashes from the Erbitux. I also had unbelievable positive results using this one drug. Such good results that my on (Dr. Krauss at University of Michigan Health Care) treated me for an entire year with this one drug alone. Twelve monthly treatments. 

This month actually marks one year NED with no treatments (my last Erbitux treatment was last February).

i have to tell you that I don't think the cream helped a ton. But I did exactly what my doctor ordered. Which was to clean my skin with soap (mostly used tea tree soap) and a wash cloth. Rubbing to make sure it was clean and then putting on a thin layer of the medicated cream. Then after that dried putting on regular cream to keep my skin very moist. I tried a ton of creams and settled on the coconut cream from Sams club. I thought it did the best job. And it also was one of the less expensive. 

My onc and his assustant constantly reminded me that this was not acne and required keeping the skin moist. Kind of opposite how you treat acne. 

Also, very IMPORTANT. My onc did lower my dose at one point. And skipped a treatment a couple of times to allow my skin a break. 

I tried head and shoulder shampoo. But I really don't think that helped all that much. like I said. I don't think the medicated cream helped much either. But I do think keeping moisture on my skin did help a lot. 

i can also say that the rash cleared up pretty fast when I stopped (Thank God).

i hope the Erbitux will help you as much as it seemed to help me. 

Sending you much love and light!!!

Phil

JanJan63's picture
JanJan63
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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

Phil64's picture
Phil64
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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's picture
JanJan63
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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.

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

JanJan63's picture
JanJan63
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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

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JanJan63
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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.

Trubrit's picture
Trubrit
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 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

beaumontdave's picture
beaumontdave
Posts: 997
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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

JanJan63's picture
JanJan63
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Thanks Dave. Having a really bad day with this today and your words really touched me.

Hugs,

Jan

JanJan63's picture
JanJan63
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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

Phil64's picture
Phil64
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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.

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Annabelle41415
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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's picture
JanJan63
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Tahnk you Kim, I appreciate the support.

Jan

JanJan63's picture
JanJan63
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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's picture
Trubrit
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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's picture
JanJan63
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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's picture
Trubrit
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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's picture
JanJan63
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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's picture
Trubrit
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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's picture
lizard44
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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's picture
JanJan63
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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's picture
lizard44
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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's picture
JanJan63
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Joined: Sep 2014

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!

lizard44's picture
lizard44
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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

 

JanJan63's picture
JanJan63
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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.

Trubrit's picture
Trubrit
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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

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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 

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

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

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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

PamRav's picture
PamRav
Posts: 251
Joined: Jan 2017

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. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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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