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I need to sign a consent for Vectibix

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I went to dr on friday.. no KRAS so she is starting me on Vectibix along with my Folfiri on tuesday..
Is Vectibix as scary as it sounds..
I am not going to say I am beautiful but my skin has been my best feature for the last 48 soon to be 49 years. is it really going to change.. I know that may sound vain but lets face I couldn't do anything to stop cancer.. I hate to ruin the one good thing I have physically..I am sure the benefits out weight the negatives but you know there is always doubts..
Dr gave an rX lotion to control the rash.. but the drugs website is a little daunting to read.
I am have the injection on tuesday.. and on Saturday I am going to Relay for Life.. I am the survivor... speaking and kicking off the event.. will I be ok.. I know seems silly to think about this. but.. I don't really have alot in my life... I have a vacation in Atlanta the end of June... I guess I need to buy a hat..

ketziah35
Posts: 1154
Joined: Jun 2010

You will need more than a. Hat. Wear longsleeves with light fabric. Might I suggest doing an indoor activity at this time of the year. Sometimes I wake up at 7 am on saturday to do groceries in order to beat the heat. I am not the one on chemo. My mother is in remission and even I have to be careful with the sun. If you go to a mall we used to always do valet parking to avoid anyone standing in the sun.

Pm me if you should need any info. Dependng on where you are touring ther are stratgies.

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

plus Folfiri and irinitocan. I haven't noticed that big a deal with the vectibix. In fact I'm spending time at a lake this weekend and went on a boat trip this aftenoon for about an hour. I wore a long sleeve white t-shirt and a wide brimmed hat, and sunscreen on my legs cause I had (long) shorts on. No problems. I did get a rash on my face after the first treatment (I've now had 6 full treatments and 2 others of vectibix only) but rx lotion helped and my onc also gave me an rx for doxycycline, which has helped as well. No more rash on my face, but I do get pimply things on my legs, chest and back. It seems to change -- nothing on my chest now, but some on my back and legs. My skin is dry, especially my face and I use Aveeno lotion a couple of times a day and that helps. It looks like I've been out in the sun, as my face has a bit of reddish-ness to it, and people actually say I have good color and look good. lol. Anyway, the med team told me to be careful in the sun, use the lotion when needed, take the doxy when needed, and I haven't worried about it much. But if I've learned anything through all this -- we're all different. Good luck!

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

(... which I call "Wheatabix") will start off as a rash, but that will fade after a couple of months. The skin on my shoulders and arms is pretty dry and I use a loofah on it every day. Unfortunately, I don't have anyone who can put lotion on that spots that I can't reach. It may cause the skin on your hands and feet to start cracking into painful splits. As mentioned above, avoid sunlight. I've almost gone vampire after getting a horrible 3rd degree sunburn on my face and left hand back in March. Aguaphor is the best thing I've found for the skin: unlike lotions, it does not cause the splits to burn when I use it. Invest in some white cotton gloves. It will keep the Aquaphor from getting on things you touch (it's greasy) and the padding helps to protect your splits.

Just remember that cancer and chemo are different for everyone, so you may not experience these things at all. The worst part of the splits on the fingers for me is that it inhibits my typing. I used to be able to hit 125 wpm and could write a 10 - 15 page academic paper in about 8 hours. At the end of the last semester it took 2 days to write 8 pages. PM me if you like, and if you need someone to talk to with similar experience, I'll give you my number. I wish there'd been someone with experience to ask questions when I first started on wheatabix last year.

Lovekitties's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

You mention that there are spots you cannot reach to apply loofah.

Not sure how much reach you need but this product might do the trick and it is especially made for lotion application.

Aquasentials Easy Lotion Applicator

You might be able to find it at a drug store near you. If not check out Amazon and you will find this and others that might be helpful for you.

Marie who loves kitties

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I am going to check out that lotion applicator as I have that same issue of not being able to reach areas on my back. I apply lotion 3-5 times daily and I would have to hire a staff to keep up with this....LOL! Thanks again

Jennie

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I have been on Vectibix for several months now. Nothing else...just Vectibix. I heard all the horror stories about the rash too and I must say that they freaked me out too. I have seen people at my chemo place that have had those horrible side effects which scared me even more. Vectibix is like any other drug in the sense that it affects people differently. The side effects I have are NOTHING like what I was expecting or what I was told. I get 2 or 3 red bumps on each cheek which I apply the gel the doc gave me at least 3x daily. I do not take any oral meds for rash. After I put on the gel I apply my foundation over those bumps and you cannot even see them. I tried applying several different types of sunscreen but it burns my skin and made my skin red so I don't use it. If I am exposed to sun for long periods of time I use aloe Vera gel. It's cool on my skin and helps with the sun. I was poolside yesterday for 6 hours in 100 degree weather and I got a few bumps on my chest but they went away that evening. I always wear hat in sun. This is just what I do....what works for ME.

Although I get no rash....my skin is VERY VERY dry. I apply lotion liberally 3-5 times daily on my entire body. I seen a dermatologist and he gave me a RX for several different creams and lotions. They all sucked. I did better on my own. I use pure coconut oil on my scalp. I did have a lot of itching but seen TCM doc for acupuncture to aide with this and no longer have scalp itch. It was driving me crazy.... Short trip..lol.

The only other thing is nail bed issues. My big toes do from time to time get a little puss under them...just in corners....and my fingers sometimes split in the corners and bleed...and it hurts. All I use on both areas is Neosporin....apply it all day long. I had to get an antibiotic 1 time when my toes would not heal and that did the trick but I try to stay away from meds if I can help it.

All in all.... I pray Vectibix works for my cancer ...and stays working....as it has been the easiest drug of all I have been on...to tolerate.

Jennie

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Sounds like your having a pretty easy go of it as far as the skin. Are you taking doxy to help relieve the side effects? It really helped to keep the rash to a minimum with me, and when we bumped up the dosage my rash pretty much disappeared completely. I've got a small patch of very light rash on my chest, but that's about it.

Are you in Arizona? That's what came to mind when you mentioned 100 degree weather and being poolside.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I have used the doxy in the beginning but did not want to take a daily antibiotic unless I absolutely had to have it and so far the rash has been very manageable. I live in southern Illinois and this holiday weekend has been a hot one. I have a very large 9 foot in ground pool next to a 6 acre lake so the swim/ fish party is always at my crib. Take care

Jennie

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Thanks Jennie,
What is a TCM?
I guess a manicure and pedicure would be out of the question.
neosporin is my best friend.. I always have that in the house..
the puss in the toes sounds horrible.. was is painfull.
I didn't know about the itch scalp thing.. had you lost hair?
Good to know it is all managable.
Thanks,
Donna

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Is Traditional Chinese Medicine. I get my nails done any time there is no infection in nails. I get fake nails put on hands and feet as often as I can. I had been bald for the past 2 years....until I started Vectibix..... My last chemo...which was Folfiri did my hair in.....but this Vectibix makes my hair on my head grow thick..... Not only on top of my head...but my brows I have to wax weekly and I have trimmed my eyelashes 3 times now. I went from NO brows, lashes and hair to excess hair....strange!

Jennie

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

so i wonder what will happen to my hair since I am taking it allong with the Folfiri. do you think they will fight each other and maybe i won't loose hair..
I wouldn't mind some eyelashes.. I lost the, when I had radioactive iodine for the thyroid..

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

My hair started falling out when I was started on iranitican , which I call rhino in a tea can, and when it got real scraggly looking I shaved it all off. When I got here and got started on wheatabix my hair started to come back in pretty thick. My eyelashes got real long and started looking like the weird eyelashes that cats get. My onc started me back on rhino in a tea can about 6 weeks ago and my hair has started to fall out again. Reckon I ought to get a wig. I look like one of those aryan nazis with a bald head. Or maybe I could do a comb over with my weird cats eyelashes?

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Thanks, Marie. It's those typical spots on the back that most people have trouble reaching. I'll check out the applicator and see if it'll work.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I have been trying to post a response since last night .. I am sorry site has not be hitting...
Thank you so much for the info.. I will definite PM with you as I would very much like someone to talk to ..
I saw you posted again in response to someone else.. all good info..
I am in jersey and the sun isn't too bad here.. I kind of avoid it anyway and always have.. which is a symptom of anemia .. I learned a long time ago. who knew..
3rd degree burn is serious... I did that one summer at the shore.. when I was teenager and I think that was when I started to avoid the sun..
vinegar will cut the sting.. but you will smell like a salad..
the typing thind is worrying me.. I need to be able to type for work.. everything is online.. I do..
where can I buy those gloves.. I found the applicator on ammazon.. it is abou 6 bucks..

wow it is raining here again..

Thanks... Donna

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Hi Donna,

The cotton gloves you can get at probably any drug store. I bought about 3 pair at Walgreen's but can't remember how much per pair they were. The rubber gloves I get at Walmart, about $10 for 100. They're Curad, the blue nitrile gloves. I like them best because they have no powder, don't make your hands smell of anything and are fairly tough so the wrists don't rip as often when pulling them like other types of gloves.

For the typing, if it's possible you can try using Dragon software. My ex-wife has bad carpal tunnel in both wrists and she uses it for her job. I've never been able to dictate and have to see things on the page or screen to make sure that it's exactly what I want to say.

I've used vinegar in the past on light sunburns, but this 3d degree monster as very sensitive. I ended up buying an aloe vera plant and used the juice from the leaves directly. Aquaphor also helped out a great deal to relieve the pain and heal the sores. About a month after the burns healed, I had a recurrence of them on my face and my left hand has a purplish tint that I fear will be permanent. From now on, when I go riding there won't be an inch of skin exposed to the light. Between the brain bucket and face mask, long sleeve shirt and gloves I should be pretty well protected from old Mr. Sun.

Look forward to your PM

Doc

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

you had me rollin here with your descriptions.... first the rhino...then the eyelash thingy... and the visual of the comb over...that was great!! I'm thinking we need a close up pic of that description! I sure NEVER thought I would see the day that I needed to trim my eyelashes!! Where you live Mr Biker??? My goodness... I have not been on a bike in years.... some pretty wild times back in the Louisville/Semo days....... :-)

Jennie

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

I'm living in Ogden UT now, moved here a year ago from Flagstaff AZ. I miss Flag a lot, especially the ride down to Sedona. Those switchbacks with the red rocks and green trees has got to be what Heaven is like. I'm riding up to Idaho Falls this Saturday to go to a Brewery Fest and I'm really looking forward to it. That will be my first real ride since before my dx.

coloCan
Posts: 1956
Joined: Oct 2009

free cream for rash:pharmiweb.com/pressreleases/pressrel.asp?ROW_ID=59178

Haven't seen tgis for US or elsewhere......

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Donna (and gang!),

It appears that quite a few of us are on Vectibix now... we should form a club :)

So, Donna... what sort of consent form was it that you had to sign for Vectibix? Was this for insurance purposes? I'm in Canada, but didn't have to sign any form so am not sure if this is an American thing or ?

As for "vanity"... don't think anything of it :) We have to go through so much on this journey, that if we have one or two things left that we want to protect (call it vanity or whatever), then we have that right... and who cares if those not going through the same journey think, "Well, that's so vain... surely you have something more important to worry about?" Don't listen to them... they don't have a clue what they are talking about or why something might be important to us.

Now, having said that... at the moment, my treatment is Vectibix only. I've been through all the others (and my empathy goes out to any of you on FOLFOX or IRINITECAN... these two I reacted to so badly, that I won't be able to try them again). So of all the chemos, and unfortunately I have been through all of them so my hopes are all on Vectibix that it will work for me for a long time to come... I find Vectibix to be one of the easiest as far as side affects that interfere with one's lifestyle. I wasn't sure how to word that because I DO have side affects, but different than all the previous chemos. I don't get the chemo fatigue, or the nausea or any of those that seem to be common with all the chemos. But yes, I have gotten the rash and the worst for me was the splitting/pain with the fingers. :/ Anything I've tried has not done anything to heal the fingers... the only way for them to heal is to stop the Vectibix.

The rash is the least of my worries. Yes, I get it on my face and where as I think it's super noticeable, my friends have looked at me closely and say that it is not noticeable unless I point it out... and then they see it, but only because they've been told. What I do before I go out in public... first, is to moisturize. Do not use a scented moisturizer... that will only feel like the skin is burning. I use a variety of moisturizers... but to stick with a theme, I use Clinique's Red Solutions cleanser to wash my face, followed with Clinique's Red Solution moisturizer. I then use a cover-stick to dab on any of the spots I think are particularly noticeable (not unlike you would do with an annoying zit). And then I put a Clinique 40SPF light foundation in lotion form... just a light base. I will then do my makeup which has always been very simple... a light powder blush, eyeliner under the lower lashes and then mascara. Voila, I'm good to go :)

Hehe... interesting everyone's different reaction about hair! When I was on the Irinitecan, I lost all my hair. I prepared for that and bought two good wigs... but seriously, I hate wearing wigs, no matter how good they may look. They are way too hot!! So for the most part, during the 10 months or so when I was bald, I just wore casual hats... like baseball caps, an Olympic beret, and a few others I had on hand. My hair grew back in, very curly (I guess you could say I had wavy hair before... personally, I thought I just had a head of frizz, especially during the rainy days ). I now have curly hair... which at the moment is in dire need of a cut/styling and color. I haven't had a cut since it grew back and it's now out of control ;)

I DID notice the eyelash thing!! Wow... I ended up with the best eyelashes!! But they also were a pain... the were so long that they would curl and sometimes the tips would then end up IN my eyes!! I never ever thought I would have complaints about having long eyelashes :)

So, all in all... Vectibix is a fairly easy treatment to be on. The rash, such as it is, is fairly easy to control... mind you, the body rash can be extremely itchy. I have found the simple Calomine lotion to be effective. As for the dryness of the skin... that is harder. That's where I have about 60 different lotions and potions to try... and I can't say I've really found a perfect solution. I have ordered some tubes of "Lucas' Papaw Ointment" from eBay Australia. It is only sold in Australia, hence ordering it from the Aussie eBbay. It is the consistency of vasoline, but is made up of a Papaya enzyme. I also use it on the split fingers... which helps, but so far has not cured them.

I was on 12 sessions of Vectibix when I was in dire need of a break because of the fingers. Timing was great because I ended up having a breathing problem and we found out one of the tumors in my lungs was partially blocking my airwaves. So to shrink that puppy, we needed to radiate... and neither my regular Oncologist or my Radiation Oncologist wanted me on Vectibix (or any chemo treatment) while going through the radiation. So all in all, I was off Vectibix for 2 months... and yayaya... my fingers healed!! I have now started up with the Vectibix again (just had my second treatment yesterday) and the rash has started up on my face, but so far, not the fingers. I know it's probably just a matter of time, but I'm daydreaming that it doesn't affect my fingers this time. We shall see.

So, today you started your Vectibix. You mentioned you are having an injection today? I get mine via IV... it's a one hour infusion (along with, I need a 3 hour infusion of magnesium because, for some reason, Vectibix eats up the magnesium in our bodies). So by injection, do you mean an IV infusion, or are you getting it differently?

Cheryl in Vancouver

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

HI Cheryl,

Thanks for all the info..
I am going to go the mall and look for the clinique products.
I must admit I have never been much of a makeup person so I reall have no idea which are good or bad.. everyone at the hospital says this is managable.
But my skin has been my best feature always.. I was a fat kid and never had acne.. so my skin is pretty flawless and I am going to 49 this month and never thought at this age I would be dealling with acne.. menapause. not acne...
It was an infussion... I guess I use the words interchangably..
Vectibix ia a Biological Agent and not a Chemotherapy so they make you sign a new waiver.. go figure..
Papaya is a an anti protein enzyme I wonder if that is why you find releif from it.. I take papaya rather than tumms when I get that food stuck feeling in my stomach.. as I had a gastric bypass before all this and if I don't chew well I get a knot in my stomach,. and the guy in GNC recommended the Papaya and it really worked. so ..

Thanks for all the good info..
Donna

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

It seems that there's always a sign up sheet for beauty class sessions for the ladies gong through chemo when I go in for treatment. Do they have anything like that at your center? They also have wig management sessions for when the ladies lose their hair and I wish that they would also offer it to us guys. I've always liked my hair long and as mentioned in another thread, when I'm bald I look like one of those neo-nazi punks. About the only thing they've offered for us guys is the 2 day fishing retreat I'm going to attend next week.

Unrelated to this thread (well, it sorta could be related), chemo today really messed me up. This is just about the most whacked out that I've ever felt after a treatment and might have to call the home-care nurse to come administer anti-nausea drugs and saline. I'm having to concentrate very hard just type my responses and feel like I should be propped up so that I don't fall over. Just a general, high grade craptacular feeling. I think this will be my last post for the night, altho I have several to make tomorrow on other threads. I've got my barf bag (a/k/a The Ghost of Poppa Smurf) next to me and am snuggling with the fur-kid to watch TV for the night.

G'night, God Bless and love to all!
Doc

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I don't attend the Look Good, Feel Better.. it is geared toward BC patient and not general cancer patients.. It is MaryKay.. and to tell you the truth they are pushy people I don't care to get to know..
But the wig thing has me angry that is discrimination.. and if that is true they should invite you in for a private consult if you express interest.. Please call your local ACS and ask to speak to the regional manager.. I am really angry.. I am on the local committee for Relay for Life and I am going to ask this question as I had no idea they were sexists. that is messed up.. and if this is true I am going to start talking about this and withdraw my support. I raise way too much money and awareness of and for ACS...
I stopped supporting United Way as they don't support Planned Parent Hood... so if this is true of ACS.. they will have to provide me a reason why and a solution..
This makes me angry..
Feel better buddy.. I am not experiencing nasuea i am having just the oposite starting.. but I am sure the piece of strawberry cheesecake I ate tonight is causing it more so than the meds.Though they did cut back some of the anti dirhea med as last time I didn't pass for days...
What a pretty picture we paint on opposite sided of the country.
Book ends...
Donna

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Donna,

I'm sure that the sexism is unintentional; after all, how many men are that vain about their hair? Your work and support for ACS is much more important. I can live without a wig, but how many people rely on the money that you raise to survive? I'm begging you, no matter what you find our, do not withdraw your support and work from ACS. After playing Alien Abductor with myself and taking a stronger anti-nausea drug, I'm feeling considerably better. Might even be able to have a beer or two to ease the pain in my back so that I can sleep tonight.

Doc

Coppercent
Posts: 158
Joined: Jan 2012

I attended the Look Good, Feel Better at my local hospital. Ours was for all cancers and not just breast cancer. I felt it was a really great program. They gave us a nice make up bag and it had a mixture of all make up companies which I thought was really nice. There were about 20 items and only one item in my bag was Mary Kay. They also included a really great scarve tying session. I would recommend it to everyone.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Donna,

I'm not sure where you are or who is offering the Look Good, Feel Better workshop in your area, but I've never heard that it is sponsored by only Mary Kay. This is a workshop where numerous cosmetic, drug stores, and other companies donate products for women with cancer. Sometimes they combine a wig consultant who brings in a variety of wigs, along with the makeup course because the whole half day is devoted to making women feel better, no matter which treatments they are going through, or what the side affects might be.

The gals running the course are all volunteer hair dressers, estheticians, make up consultants, etc. who are volunteering their hours for these courses. They do not belong to any of the sponsors... as a matter of fact, they don't know what are in the goody makeup bags until they get there that day for the course. Every course can vary with the goodies because more sponsors come on board, or existing ones change the products they offer. But every woman goes home with a goodie bag that can be worth up to $200 in products.

So I'm not sure where the Mary Kay consultants would come in because these workshops are not meant to push any particular product. It is a workshop on how to deal with what you are going through and how to get the most out of what products you may have around the home... and if any in the goodie bag are new to you, then how to use them. They also give really helpful advice for things like... if you lose your hair, eyebrows, eyelashes, etc... what are some makeup techniques to compensate for this. Obviously, not everyone needs all of this because not everyone loses their hair. But it's a fun afternoon to be with a group of women who you know are going through similar experiences as you are and just get to "play makeup", as well as, have experts on hand to give you helpful hints :)

Cheryl

Takemeom
Posts: 14
Joined: Jan 2015

alive?

Coppercent
Posts: 158
Joined: Jan 2012

I would trade the Wig Management class any day for the 2 Day Fishing Trip!

Takemeom
Posts: 14
Joined: Jan 2015

from 2011 and 2012 posts....who is alive and still on vectibix?

Trubrit's picture
Trubrit
Posts: 5335
Joined: Jan 2013

I think they are both still with us, though not posting. Marie (Lovekitties) is, of course, but not sure if she was on the Vectibix. Sadly Doc Hawk has passed on and I'm not 100% sure, but I think Cheryl has as well.

TRU 

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