really it's just that i can't decide if i am putting out something folks can relate to, or something that's chalk full of whining.
i had my follow up in june and it went beautifully. i am really fortunate to have the best dermatologist i've had in my life at the major turning point for my skin. one who understands, is compassionate, and is educated beyond what her qualifications require. a doctor who believes in evidence based practice and treating each patient for who they are and where they are.
for the first time i was given a preventative care option. a choice to use an imiquimod cream first, followed by a topical chemo and rounded out with a retinoid treatment.
***disclaimer, imiquimod is sometimes also called a topical chemo, but i am not a doctor or a pharmacist and i can't really speak on the truthfulness of that statement. my doctor doesn't refer to it as a chemo, so i won't either***
this post will sum up the 6 weeks on the aldara, which is the imiquimod cream.
aldara is the brand name. the medicine is supposed to work by attaching proteins to mutated cells that tell your body to fight. it triggers an immune system response. in this setting, it is meant to get rid of actinic keratosis (pre-cancers), and sometimes the very earliest stages of basal cell carcinoma. it is milder than a topical chemotherapy, and won't leave scarring like surgery will.
i did 5 days on applying the medicine once at night to my entire face, 2 days of a break, for 6 weeks. i should mention here that i am a reactive person when it comes to medicine-- i get side effects from nearly anything, and i take half doses of everything except antibiotics. medicines seem to hit me hard and linger.
here is my best before picture, or at least the most recent one i could find:
let me give you my word of advice, now that i am done: act like you are sick. you don't necessarily have to GET sick. but treat yourself as though you are from the beginning. eat good foods. drink a lot of water. rest. don't feel like you have to take your kids swimming every day and go to friends' birthday parties if you don't want to. treat yourself well and odds are better that you won't end up with an infection and a ton of crying ;)
by the end of week one all i could tell was that i was getting a few tiny red bumps on my forehead. no sensation from the cream itself. HOWEVER. i was throwing up by day 3. i threw up for 2 days and then it turned to just nausea. i didn't figure out this was from the medicine until late next week when i finally had to look up side effects. i didn't even take a picture it turns out-- there was that little change.
by the end of this week i had a handful of red spots that were at least 3mm in diameter and very, very pink and angry. my forehead and temples, and now lip, reminded me of the poor kid we all knew in high school whose face would ooze a little during science class. there was a slight tingling sensation when i put on the medicine, and at the end of this week i got a sore inside my lip. the nausea began to taper off halfway through this week and it was the cold sore that prompted me to look up side effects. these photos are end of week 2.
on my second night off of the medicine i used the perfectly posh apricots overnight face mask and even my husband noticed the next day that it looks less red and puffy, which was great becaaaaaause
i made a mistake. believing that was i had was the same as acne, i figured going to an outdoor birthday party and staying in the shade wouldn't be harmful at all. after all, kids with acne enjoyed summers too!!! i stayed in the shade all day. by about 3 hours in my forehead was burning. a cold bag of ice became my best friend. we got home around 9 (party started at 3) and i cleaned my face and put on the cream. immediate burning and every sore turned dark, bright red and began swelling. i cried a bit, took tylenol and slept terribly. the burning continued the next day and the nausea found its way back. ibuprofen, ice packs, and refrigerated things started becoming important this week. refrigerated aloe vera gel from our plant mixed with a few drops of peppermint oil. refrigerated vaseline. refrigerated coconut oil. refrigerated head bands. cold stuff. any. thing. cold. the sores started spreading out wider this week as well.
you can see the lip here. this was the most excruciating thing by far. thankfully it was also the fastest sore to heal
week 5. this week is where my story hopefully splits off from everyone else's! this is the start of the week, and it turned out, the start of an infection.
at the start of this week (sort of also the end of week 4) i began getting much more nauseated and tired. i thought this was because i was so far into the medicine, and new spots were still coming up every day. i ended up spending an entire day sleeping. i also realized shortly after the weekend that none of the spots on my face had healed or begun healing at all. i ended up calling my doctor on wednesday and described what was happening, and went in on thursday to find out a few things: i had more spots than they had expected (same here!), there was an infection, and that apparently most people don't make it this far with this many lesions haha!!
so some notes about what SHOULD happen, and i will have some pictures of that in the next block.
1. at some point after week 2, at least SOME parts of SOME of your lesions should start to heal in some way. this can be forming scabs, or the white layer of skin that seems to be common, or just seeing parts drying out. so if you only have one spot and it's still growing and changing, keep an eye on it because some just get big, but if you have 10 and some are small and aren't starting to heal in week 3 or 4, that is sometimes abnormal. keep an eye out for infection
2. some inflammation is normal. swelling is not. if you cannot move part of your face because of the swelling, that is not normal. my forehead was swollen to the point that i was physically unable to my eyebrows. inflammation and a little tenderness are fine. pain and swelling are not.
3. scabbing, some crustiness, a little bit of oozing and maybe some slight bleeding CAN all be normal. if you are dripping blood, that usually isn't. if you have drops of ooze or pus, that isn't. if you are peeling off wet scales and clumps of gummy dead skin from all over your face, that isn't quite normal but can be if you are coated in vaseline! ultimately, from being able to compare the few blogs i've seen, what you want over the sores is a white-ish film or those nice pink scabs. you don't want yellow.
4. irritation is going to happen. but if you want to claw off your skin, something might be wrong. or you have a particular sensitivity to itchiness (i think a lot of people do!). if you want to claw your face off and you have yellow crusts on your wounds and part of you is so swollen it can't move at all, that is probably a sign of a problem.
my dermatologist told me to stop the aldara, start a topical antibiotic, and focus on trying to heal. within 24 hours on the antibiotic, the swelling was almost gone.
in the end, after i stopped the treatment, it took about 10 days for everything to heal.
a month later, i have scars. not big ones, but visible ones. i am also starting efudex, so maybe that will burn off some of the skin and leave fresh skin behind. maybe that's wishful thinking.