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[cancer] The psychic pain of Vectibix - Lakeshore
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Jay Lake
Date: 2012-10-22 05:51
Subject: [cancer] The psychic pain of Vectibix
Security: Public
Tags:cancer, health, personal
As previously mentioned, thanks to my friend Vectibix (the anchor drug in my chemo regimen on this third series), I experience severe acne and moderate skin rashes. To combat this, I am given Doxycycline, which for its side effects induces both phototoxicity and photoallergic reaction, which much to my surprise is true immune system response. A bit more on the difference between the two here.

Fundamentally, this means my skin, especially the skin of my face, is one hot mess. Literally one to two minutes of direct exposure to sunlight can cause redness, swelling and cracking. This is because I'm profoundly sensitive to UV, to the point where the partial UV shielding provided by window glass or even many forms of clothing is not effective in blocking my skin reaction. (That was my new learning this weekend, by the way, that even most sunscreens don't fully block UV, and neither does window glass.) I've become twitchy at any sunlight, which must be operant conditioning in action, but is a very real phenomenon.

The medication currently prescribed by my doctor is 2.5% Hydrocortisone cream. I'm suppose to be using it daily from now until about next May. Except that Hydrocortisone cream has a well known side effect of thinning and damaging the skin on repeated application, including permanent scarring. So now I'm supposed to use it on the skin of my face, which is already so thin and damaged that I will emit blood spots under gentle pressure?

I am being deeply paranoid about this. My pharmacist, while being very careful not to criticize my doctor, strongly agrees with me.

The big problem here isn't dermatological, however. All of this is feeding a strong adverse emotional reaction. My disease has never before affected the way I present myself to the world with anything like this degree of obviousness. I feel disfigured, unattractive and marked. Basically, I look like I spent a week in Hawaii with no sunscreen eating nothing but chocolate and Crisco. This has quite badly rocked my social self-confidence, my relationship style, and my self image.

The people who love me still love me just the same. My friends and my friends. Strangers don't flee in screaming terror at my approach. Frankly, I haven't even noticed anyone staring at me in public. So I know it's not that bad. But it feels that bad. In part, because the skin on my face never feels normal. There's a constant sensation somewhere between itching and low-grade pain. This 'skip' week of chemo (thanks to me failing my blood tests last week) is giving me some relief, but I'm shedding skin flakes and dandruff everywhere I go. My beard coverage stings and feels brittle, but skin is too fragile to shave it off.

In other words, unlike virtually every other symptom and side effect of either cancer or chemotherapy which I have ever experienced, this one never lets up. Not for a minute.

It's always there, always reminding me, and always marking me out from the herd.

I feel like the proverbial pink monkey, and besides that, it always hurts. In some very real senses, this is the toughest thing cancer has made me put up with so far.

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A wandering fellow on the long road
User: tsarina
Date: 2012-10-22 13:14 (UTC)
Subject: (no subject)
I used to have some severe skin issues on my face, and I'll never forget the misery and horror I experienced when some jackass boyfriend of an acquaintance asked me "What's wrong with your face?" one night. I still regret not dumping my coffee in his lap.

Maybe you can tell people you're a vampire with a sunburn, if someone asks.

I have no good ideas or advice, just a lot of sympathy for how it messes with your mind to have something happening to your face.
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threeoutside
User: threeoutside
Date: 2012-10-22 13:29 (UTC)
Subject: (no subject)
Yeah, your friends do still love you.

*Roman salute instead of a hug?*
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joycemocha
User: joycemocha
Date: 2012-10-22 13:33 (UTC)
Subject: (no subject)
Eczema is a nasty, nasty bitch. I've gone from having it all over my hands, forearms, buttocks and feet since I was four months old (as well as other assorted locales) to being essentially absent for the past few years. The itching is low-grade painful.

Don't use soap. Period. Cetaphil is much better and less painful on the skin. The less water, the better. Use a moisturizing cream in addition to the hydrocortisone (god, I had so many hydrocortisone creams on my body that no one would tell me what they were when I was a kid. Now I recognize the high-powered stuff by smell and coloration).

There's a compounding cream called AquaPhor that, if you can get it, is hypoallergenic and helps retain moisture in the skin. No lanolin (you have to watch out for that as sensitivities can develop). Loweena, Aveeno, Eucerin (with lanolin) are all good moisturizing creams which can help somewhat.

Feel free to ask for more...I've a lifetime of experience in managing skin allergies, albeit not on the face (thank god, I've had other issues there).
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MG Ellington
User: xjenavivex
Date: 2012-10-22 13:57 (UTC)
Subject: (no subject)
I am sorry you are going through this on top of the rest of it.
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scarlettina: Hug 2
User: scarlettina
Date: 2012-10-22 14:27 (UTC)
Subject: (no subject)
Keyword:Hug 2
God, Jay, what a misery! The only thing I can think to suggest is to check out a couple of stores where they sell clothes specifically for travel--or check them out online. Why? Because you can get clothes that are rated to resist UV light for travel in places like Africa. I got a couple of tops like that from Ex Officio years ago for my trip to Kenya. Might help. ::fingers crossed::

And--yep--love you no matter what.
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cathshaffer
User: cathshaffer
Date: 2012-10-22 14:33 (UTC)
Subject: (no subject)
Jay, this sounds horrible and is very worrisome. According to the label information for Vectibix, 90 percent of patients have dermatologic toxicity, with 16 percent being severe, NCI-CTC grade 3 or higher. I looked up the NCI staging for dermatologic reactions, and you seem to be pegging grade 3 or 4 on some of them.

http://ctep.cancer.gov/protocolDevelopment/electronic_applications/docs/ctcaev3.pdf

Notably, for photosensitivity, erythema with desquamation (rash with peeling skin) is grade 3. Grade 4 is a life-threatening or disabling reaction that is unspecified. Grade 5 is death (presumably from infection).

For pruritis (itching), Grade 2 is intense or widespread itching, Grade 3 is intense or widespread itching interfering with activities of daily living (ADL)--sort of a judgment call, but from what you say about getting no relief ever all day, I would think grade 3.

I'm not sure what stage your rash or acne would be, but it sounds like serious stuff. People with severe adverse reactions are supposed to discontinue Vectibix, so you might want to ask your doctor how far he's willing to let this go. It really sounds horrendous. I'm so sorry. You have all of my thoughts and sympathy.
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Jay Lake: cancer-do-not-want
User: jaylake
Date: 2012-10-22 14:42 (UTC)
Subject: (no subject)
Keyword:cancer-do-not-want
I have spoken to my oncologist about this. She says that the reaction will stabilize within a few more weeks, then reduce somewhat in intensity as time goes on. (She also says she's seen worse, which was hardly comforting...) So I think we're trying to ride this out, while I work very hard to avoid sun exposure.

Discontinuing Vectibix would be bad...
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cathshaffer
User: cathshaffer
Date: 2012-10-22 14:52 (UTC)
Subject: (no subject)
Good. I hope it goes as your oncologist expects. I wouldn't want to see you stop the Vectibix, but also wouldn't like to see some of the grimmer stuff on the drug label happening to you either. Hang in there. :-(
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Rick Moen
User: rinolj
Date: 2012-10-23 02:52 (UTC)
Subject: (no subject)
Hmm, the only things I can think of, offhand, are moisturising cream to minimise the direct damage and a broad-brimmed hat to further limit sun exposure. It sure sounds miserable. Dammit.

Maybe not moisturising cream, but something in the general category. You might just try a bunch of those, e.g., cadged from friends for trial purposes.


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Kate Schaefer: First Icon
User: kate_schaefer
Date: 2012-10-22 14:41 (UTC)
Subject: (no subject)
Keyword:First Icon
Eeearggh. You will get many suggestions for things that may help. My friend Heather stopped using soap and started washing just with water, then applying olive oil to all her skin. It helped. She never went back to soap, even after chemo stopped. Another oil that's worth trying is coconut oil.
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Jay Lake
User: jaylake
Date: 2012-10-22 14:43 (UTC)
Subject: (no subject)
I have been experimenting with both coconut oil and olive oil... Olive oil is a bit less messy.
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Keikaimalu
User: keikaimalu
Date: 2012-10-22 18:18 (UTC)
Subject: (no subject)
Whoops -- just saw this. Never mind my post below, except for the commiserations.
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shelly_rae
User: shelly_rae
Date: 2012-10-22 15:47 (UTC)
Subject: (no subject)
Hiya, as you know. Been there, done that.
I'm very comfortable with products from Alaffia. You can get them at Whole Foods. Get the face cream, it's made with AlaffiaShea butter. Their renewal face cream and their are light but just feel good. I had the extra whammy of facial scars.

Sunblock clothing like Janna recommended is good. Also a big floppy hat. And really soft scarves.</p>

Good luck, be well.
Carpe diem dude.
Anon

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Keikaimalu
User: keikaimalu
Date: 2012-10-22 18:18 (UTC)
Subject: (no subject)
That really sucks.

I am glad at least that we live in an age when you can reach out online, in a way in which you can shield yourself visually if you so choose, but still receive support. Feeling self-conscious about how you look -- and dealing with concomitant pain -- must be so demoralizing. I'm sorry.

Have you experimented at all with olive oil or coconut oil? You could try a little on the back of your hand before going for the face. I'm just hoping you'll find something to soothe the symptoms, both pain-wise and visually.
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Jay Lake
User: jaylake
Date: 2012-10-22 18:21 (UTC)
Subject: (no subject)
I tried both last week, at your suggestion I believe. Olive oil seemed to work slightly better than coconut oil. Less messy, and I'd rather smell like pesto than like pina colada... :p
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Keikaimalu
User: keikaimalu
Date: 2012-10-22 18:40 (UTC)
Subject: (no subject)
I hope it helps your skin. And I still recommend trying the Strong Skin Savvy products too. They're also messy, though.

Hey -- many years ago, I had a massage at a spa, and they basically soaked my skin with 3 things in succession: milk, honey, and then olive oil, rinsing after each. I realize how weird (and sticky) it sounds, but you might consider bathing your skin with milk and/or honey too. They're both fantastic moisturizers. Just some more options to try, if the oil isn't sufficient.

Yeah, insert land-of-milk-and-honey (or Lake-of-milk-and-honey) joke here.
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frabjouslinz: Me Street
User: frabjouslinz
Date: 2012-10-22 21:19 (UTC)
Subject: (no subject)
Keyword:Me Street
I'm sorry, Jay. That sucks so much.

As someone who has had skin issues off and on, I can only echo some of what others are saying. Adding maybe, if the rashes are part irritation from clothing, or are irritated by clothing, look for laundry detergent that is super mild, uses no perfumes or dyes, etc, if you haven't already. Also, not that you want to add another dr to your long list, maybe a dermatologist could help with some suggestions that aren't hydrocortisone for 8 months. My dermatologist helped me so much with various rashes over the years. Even if she couldn't find out what was causing all of them. (!)

I will think soothing, soft thoughts at you. And look for silk scarves. You could be very Jackie O. Love and hugs.
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Rhonda Parrish
User: rhondaparrish
Date: 2012-10-22 21:25 (UTC)
Subject: (no subject)
I'm sorry, Jay. I hope things ease up for you soon.
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Shefa
User: shefa
Date: 2012-10-22 22:16 (UTC)
Subject: (no subject)
Jay, do you have a Traditional Chinese Medicine doctor in your area? They make some incredible teas (meant to bathe in) that do wonders for skin. There's someone here in Chicago who is an MD and a TCM doc who trained in oncology. He'd know if there was any contraindication with your treatments. I wonder if what he has on hand would help?

www.liferising.com (they need a copyeditor for their website ;))

Dr. Guo. I took my son (who had eczema so bad it was bleeding) to him and was amazed enough at the results that I went to see him myself (not for eczema :)).
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Jay Lake
User: jaylake
Date: 2012-10-23 00:59 (UTC)
Subject: Re: Musings.....
Pinking it up as best I can...
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Magn0lia
User: magn0lia
Date: 2012-10-23 15:03 (UTC)
Subject: (no subject)
Sending sympathies and hope you find some relief very soon.
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