Update and a funny! What else can these treatments take from me?

[BeansMama]

Update!!!!

Saw the onc, according to him. He has not seen the vectibix rash get as bad as mine was after the first treatment. Gave me oral antibiotics that I will be on for the duration to see if that helps. His nurse gave me some lotion samples to try for the lizard skin.

I do have a funny, someone entered my pharmacy into the computers incorrectly. My script was sent to a pharmacy in Illinois instead of the one I use in North Carolina!

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I haven't been on much lately, I have really been struggling the last week or so. It has been an emotional roller coaster to say the least.

I have the full blown vectibix rash. I feel so GD ugly. I rarely leave the house (only if I absolutely have to) and it hurts! My skin is not only red, bumpy, has more pimples than a kid heading to their Jr prom, and itchy, but it hurts like hell too.

I am also heading into what I refer to as the lizard phase. It is becoming dry and scaly on top of everything listed above. I have resorted to organic coconut oil with some soothing essential oils that also combat infection mixed in. Regular lotion just was not doing enough. The catch 22? Scales better, pimples worse.... Oh and I'm shiny...

Thank God hubs loves me unconditionally because I know I have been a bear to deal with this last week on top of everything else he has going on.

Anyway, thanks for reading my whine fest. Anyone have any idea of there is a light at the end of the vectibix tunnel? Or will I deal with this the entire time I am being treated?

[Marylandmaniac]

SO sorry to hear about this. Is this something the doctors said would happen? Your husband sounds like a great guy!

[mypinkheaven]

You could never be ugly! And we all love you unconditionally! I'll try to research what to use on that darn rash.

Sally

[mypinkheaven]

Seems to work best if you start treatment for the rash before it gets too bad. It will go away.

http://fightcolorectalcancer.org/in-lov ... _vectibix/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644628/:
Skin toxicity treatment in the pre-emptive arm included skin moisturizer, sun-screen, 1% hydrocortisone cream, and doxycycline 100 mg twice daily.

Good news: Available retrospective evidence suggests that the appearance and severity of skin rash is positively correlated with objective tumour response to egfri therapy.




Tips for managing your skin include:

Use a thick, alcohol-free emollient lotion or cream on your skin at least twice a day, including right after bathing.
Avoid sun exposure, as it can worsen the rash or cause a severe burn. Use a sunscreen with an SPF of 30 or higher and wear a hat and sunglasses to protect your head and face from the sun.
Maintain sun safety precautions for at least 2 months after the last dose.
Bathe/shower in cool or lukewarm (not hot) water and pat your skin dry.
Use soaps, lotions and laundry detergents without alcohol, perfumes or dyes.
Wear gloves to wash dishes or do housework or gardening.
Drink plenty of water and try not to scratch or rub your skin.
Notify your healthcare team if you develop a rash, as they can provide suggestions to manage the rash and/or prescribe a topical medication to apply to the rash or an oral medication.
If you develop peeling or blistering of the skin, notify your healthcare team right away.

[BeansMama]

SO sorry to hear about this. Is this something the doctors said would happen? Your husband sounds like a great guy!

Yes, my oncologist warned me about it. The vectibix is a monoclonal antibody that attacks the epidermal growth factor receptors. Larry my large liver tumor happens to give off the signals for that so the vectibix will attack him. The only thing that sucks is it attacks my skin too. I am really trying to look at it in the frame of mind that hey, it means it is working right? But it's hard when you end up crying every time you look in a mirror.

I really won the husband lottery I think. He is an amazing guy and I am so lucky to have him.

[BeansMama]

Seems to work best if you start treatment for the rash before it gets too bad. It will go away.

http://fightcolorectalcancer.org/in-lov ... _vectibix/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644628/:
Skin toxicity treatment in the pre-emptive arm included skin moisturizer, sun-screen, 1% hydrocortisone cream, and doxycycline 100 mg twice daily.

Good news: Available retrospective evidence suggests that the appearance and severity of skin rash is positively correlated with objective tumour response to egfri therapy.




Tips for managing your skin include:

Use a thick, alcohol-free emollient lotion or cream on your skin at least twice a day, including right after bathing.
Avoid sun exposure, as it can worsen the rash or cause a severe burn. Use a sunscreen with an SPF of 30 or higher and wear a hat and sunglasses to protect your head and face from the sun.
Maintain sun safety precautions for at least 2 months after the last dose.
Bathe/shower in cool or lukewarm (not hot) water and pat your skin dry.
Use soaps, lotions and laundry detergents without alcohol, perfumes or dyes.
Wear gloves to wash dishes or do housework or gardening.
Drink plenty of water and try not to scratch or rub your skin.
Notify your healthcare team if you develop a rash, as they can provide suggestions to manage the rash and/or prescribe a topical medication to apply to the rash or an oral medication.
If you develop peeling or blistering of the skin, notify your healthcare team right away.

Thanks my pink heaven! That is some info I did not come across in my searches. I have been using the lotion my doc prescribed religiously for the pimples - he gave me a clindamyacin lotion, I think I need to find a better lotion for just regular skincare though, I had to stop using the one I have (it's for sensitive skin too!!) because it burns when I put it on. That's when I went to coconut oil and essential oils.

Need to hit the burts bees section and probably pick up some Castille or goats milk soap to use while I have it.

So glad it will go away, everything I found said I would have some form of it for the duration of treatment.

[midlifemom]

Beans mama,
So sorry youre feeling crummy.
I have heard of others getting relief by going through knowledgeable dermatologist instead of onc or pcp.

I think its a race as to who has best husband - mine is also awesome. At least we got extra lucky in that department.

[Pita]

Aw Beans, I'm so sorry, I feel for you and I know exactly what you're going through. Great links from Sally

Searched through the posts and here's a few things that were suggestions from others for rash and skin dryness/flaking:
...The dermatologist at MSK prescribed Ammonium Lactate Cream (12 per cent) for my excessive flaking skin due to Vectibex. It is a humectant, it attracts water from the air, which eliminated the dry, flaky skin in about two days. I liked it better than over the counter moisturizer because it didn't have a greasy feel to it.
...Check at the pharmacy that fills your chemo prescription, or if your oncology clinic has a pharmacy, and see if they have Urea Care. Urea is what is in the Bag Balm (but at a lower %), and it's made specifically for people with diabetes and on chemo. It's practitioner strength, so you can't get it at regular stores / pharmacies (at least not that I've found). If you can't find it, ask your oncologist if they know a way to get it. It's very rich, like some of the more "Vaseline" type creams, but penetrates right in and doesn't stay greasy on your skin or get all over your clothes. A 6 oz size costs $8 at my onc pharmacy, so it's a little pricey, but for me seems worth it. Plus, it smells nice because it has Lavender oil in it. Almost like aroma therapy while moisturizing.
...Cortison OTC 1% hydrocortisone cream helped sooth my rash sometimes.
...I also like using Udderly Smooth w/urea
...A cool damp washrag held on my face helped a lot but definitely have to apply cream after.
...Stop looking in the mirror, get a hand mirror to apply to the rash, doesn't look so big.
...If possible do a search here on CC for Vectibix and Erbitux, lots of posts show up with more suggestions.

Wishing you well Beans,get through this miserable rash and I'm sending lots of prayers and hugs... ox

[BeansMama]

Beans mama,
So sorry youre feeling crummy.
I have heard of others getting relief by going through knowledgeable dermatologist instead of onc or pcp.

I think its a race as to who has best husband - mine is also awesome. At least we got extra lucky in that department.

Midlifemom,

A dermatologist is a good idea. Will have to see if I can get an appointment with one.

Yes, It is definitely a wonderful thing to be extra lucky in that department. Glad I am not the only extra lucky one

[BeansMama]

Aw Beans, I'm so sorry, I feel for you and I know exactly what you're going through. Great links from Sally

Searched through the posts and here's a few things that were suggestions from others for rash and skin dryness/flaking:
...The dermatologist at MSK prescribed Ammonium Lactate Cream (12 per cent) for my excessive flaking skin due to Vectibex. It is a humectant, it attracts water from the air, which eliminated the dry, flaky skin in about two days. I liked it better than over the counter moisturizer because it didn't have a greasy feel to it.
...Check at the pharmacy that fills your chemo prescription, or if your oncology clinic has a pharmacy, and see if they have Urea Care. Urea is what is in the Bag Balm (but at a lower %), and it's made specifically for people with diabetes and on chemo. It's practitioner strength, so you can't get it at regular stores / pharmacies (at least not that I've found). If you can't find it, ask your oncologist if they know a way to get it. It's very rich, like some of the more "Vaseline" type creams, but penetrates right in and doesn't stay greasy on your skin or get all over your clothes. A 6 oz size costs $8 at my onc pharmacy, so it's a little pricey, but for me seems worth it. Plus, it smells nice because it has Lavender oil in it. Almost like aroma therapy while moisturizing.
...Cortison OTC 1% hydrocortisone cream helped sooth my rash sometimes.
...I also like using Udderly Smooth w/urea
...A cool damp washrag held on my face helped a lot but definitely have to apply cream after.
...Stop looking in the mirror, get a hand mirror to apply to the rash, doesn't look so big.
...If possible do a search here on CC for Vectibix and Erbitux, lots of posts show up with more suggestions.

Wishing you well Beans,get through this miserable rash and I'm sending lots of prayers and hugs... ox

Thank you so much Pita for doing all of that searching! I admittedly slept most of the day today and did not accomplish anything I had wanted. Searching was one of those things and you gave me a great deal of info and some items to look into further.

All of your help is truly appreciated

Keeping you in my thoughts and prayers too

[AbbyDoo]

I'm sorry your feeling down. I so wish there was a magic pill so no one would ever have to go threw this.
Hope you get feeling better fast.

[BeansMama]

I'm sorry your feeling down. I so wish there was a magic pill so no one would ever have to go threw this.
Hope you get feeling better fast.

Thanks abby, maybe we should all put our minds together and come up with that pill. We have some pretty smart cookies on these boards

[crc2007]

BeansMama, so sorry to hear what you are going through.

Mypinkheaven and Pita, what a lovely thing you have done with your research - a really caring gift to BeansMama.

[AnnClare]

Beans - so sorry you're having to deal with these awful side effects. Having a supportive hubby is absolutely a blessing!

I understand feeling crummy & ugly - I think we've all been there. But you're a lovely, beautiful person - you just happen to be going through a sh*t time. I know when you're in the midst of one of these 'bad' phases, it feels like an eternity. But it's temporary.

I'm a huge fan of coconut oil & various essential oils as well. Herb-infused oils might also be helpful, particularly calendula. It has wonderful skin-soothing properties. I've been a fan of Mountain Rose Herbs for over 10 years now (not affiliated - just a devoted customer.)
https://www.mountainroseherbs.com/searc ... =%E2%9C%93

Rosehip seed oil is also very beneficial for the skin. Vitacost carries it for a bit less than Mountain Rose Herbs.

Hang in there, honey. I know it's rough and it sucks like nothing else, but you'll get through this challenge.
*hugs*

[DarknessEmbraced]

I'm so sorry you are going through this!*hugs* I hope someone can recommend something that will get rid of the rash!*hugs*