Thursday, June 7, 2018

The Taxotere Rash

(which sounds like a dance move, but it's not)


I can hardly believe it's June already! This year has literally flown by, with so much happening that it's "inconceivable" [name that movie for 10 points!] to find ourselves living in Las Vegas when, on January 1st, the only thing I could think about was trying to breathe after my asthma flared up and bronchitis hit. This will no doubt go down in the annals of Hoyt history as the year Kim got sick and stayed sick for the entirety of 2018.

I find myself telling time in terms of treatments. I suspect a lot of cancer patients do that. I also have a little game going as to who "wins" each week. Last week "defeated" me, as my Ugandan friends would say.

Along with all the other side effects I've gotten each time, a painful, burn-like rash appeared on my hands and face. The hands were the worst, bright red creeping across knuckles and up and down the thumbs. Healing has begun, burned skin peeling and new skin feeling taut, but no longer hurting. My face is splotchy, not too bad except around my eyes, which are still ouchy.

Thankfully I have a proactive oncology team and was able to talk daily with my nurse last week, and we stopped by the office so she and the nurse practitioner could look at the rash. They put me on steroids and an anti viral medicine (covering all their bases?), and I'm using Systane Ultra eye drops. My cousin Ruth told me about Aquaphor, which I'm using on my hands. I guess it has lots of uses, and one of them is soothing burns.

Those who know me, know I immediately jumped into researcher mode and learned all I could about the infamous "Taxotere rash". I read articles by the American Cancer Society, Mayo Clinic, the British NCIH site... I avoided the quack med sites since they have nothing substantive to say. Long story short, it would appear the level of Taxotere given this last time was too toxic for my system. The nurse practitioner agreed we need to lower it next time and see how it goes.

Taxotere has been found to be very effective when used in conjunction with other chemo drugs, to extend life expectancy. With the addition of Taxotere, 72% of women were still living 5 years later, compared to around 60% without it. So it has it's place. But the trick is determining the quantity needed without being too much. Typically they factor the amount based on weight. Since I've had some pretty serious health issues the last few years, leaving my body already compromised before even beginning treatment, that has to be part of the equation as well.

I'm grateful for the wonderful men and women in the oncologist's office who really care about me, the person, and not just me, the patient. One thing we learned while living overseas was that you have to advocate for yourself. I'm thankful I can do that AND have others advocate for me as well.

Ivan is my #1 advocate and one thing he's pushed for all month is to get a case manager so we don't keep getting bounced around with our insurance company. His persistence paid off and we finally have one! It's such a relief, and the person assigned to us seems really kind, plus she's an R.N. I think it will make a huge difference going forward (especially with Ivan's blood pressure!).

On drives to various appointments and tests, we've seen some really funny signs. My favorite was a huge banner across a new condominium complex that read "Amazing Ocean Views" and in smaller letters below: "Just Kidding!" The complex ran along a dry river bed.

Another that made us laugh out loud was a garage sale sign: "Awesome crap you didn't even know you must have!"

What can I say? We take our amusement where we can find it.

Getting more excited as the countdown gets closer to a visit from Jon, Natalie and the girls. Pretty sure we'll have amusement overload with all the grandkids together! They arrive 10 days after my next round of chemo, so praying I'm over the bad part by then and feeling decent. I really want to be able to enjoy snuggling the new baby, and watching the antics of the 2, 3 and 4 year olds!

I'm also hoping it isn't quite this hot when they visit. It's been in the low 100s consistently. I have to say, it hasn't bothered me as much as the heat did in Indiana; take away the humidity and it really does make a difference. 

4 comments:

rita said...

Ha! I first thought you were talking about the one doing taxes rather than a drug by that name.
Grateful for your team out there and the more favorable weather, tho' hot now.

Mari said...

I'm so glad you have a case manager now. I think that will be a huge bonus. That rash sounds miserable and I'm thankful you are doing better.
Your sense of humor is very good for your health!

Betty W said...

So glad you finally have a case manager and have people that care about you. Hopefully they will get the level of drugs right next time.
Hopefully you will be well enough in order to enjoy your visitors.

The Bug said...

I'm glad that things seems to be coming together, although I'm salty that you have to go through this at all.

I don't think I realized that you really do have stair-step grands - cute! Do you think Simon will be bossy, being the only boy with all those girls?