For those about to A/C ...

Posted by hb on 21 May 2011, 06:18PM

For anyone about to start AC (doxorubicin/cyclophosphamide) chemo, I thought I’d share my experience. I’ve just completed four cycles of ‘dose-dense’ AC. (‘Dose-dense’ means it was administered fortnightly, instead of the more usual 21 days.) I’m about to start Docetaxel for the next four rounds, so stay tuned for some reflections on that, too.

First of all, the usual caveats apply – ie everyone is different, and my experience may be dissimilar to yours, or anyone else’s. Having said that, I’m only going to talk about side effects that weren’t listed on the info that was given to me by doctors/nurses, and also share some of the strategies that made me more comfortable. It’s probably going to be a longish post, so you might want to make yourself a cup of tea (or pour a glass of beautiful McLaren Vale red) about now…

  1. First and most significant for me: night sweats. On the first night of each treatment, I experienced drenching night sweats. This was especially troubling to me because it seemed to me that my sweat smelled like the chemo. And consequently, my pjs and bed linen smelled like chemo too. (No-one else could smell it, but I know it didn’t smell like ‘normal’ sweat.) Coupled with sleeplessness (see below) it was just horrible – kind of consuming. How did I deal with it? Once I knew to expect it, I prepared by keeping clean pjs in the bathroom. When I wake up saturated in sweat, I jump straight into a hot shower, then change into my clean pjs, have a spritz of my favourite perfume, and go back to bed. The next day, I change the bed linen.
  2. Sleeplessness. For the first four nights after treatment, I experienced profound sleeplessness. I had no trouble falling asleep, and would sleep like a baby for the first couple of hours—but then (just like a baby) I’d wake up every hour or so. Then from about 2 or 3am, there was no more sleep to be had. For this, nothing much has helped (apart from exercising, see #4). But eventually I realised that missing sleep wasn’t doing me too much harm—sooner or later, I’d get a good sleep and things improved. Meanwhile, I put a capful of lavender oil in the final rinse when I’m washing the sheets, and put another dab on a handkerchief under my pillow. (Lavender is supposed to help you sleep.) Once I accepted that I wouldn’t sleep past 3 or 4am, I just relaxed. I use the time for contemplation, listening to music, and sometimes reading. (Mostly, though, my eyes feel too sore to read.) I’ve also uploaded a guided meditation to my ipod so that I can consciously reenergise and refresh myself – nearly as good as sleep, anyway!
  3. Sensitive skin. I don’t have a remedy for this, but a couple of days after each treatment, various parts of my body felt incredibly sensitive, as if really sunburnt. Usually I experienced this all over my head and neck, and sometimes all across my back and chest. It hurts to touch, but only initially. My partner applied a ‘cooling’ moisturiser to affected areas and that felt nice, but it didn’t really change things. This always passed within a day or two.
  4. General blah-ness. For most of the 7 days after treatment, I felt just a bit blah. I felt flat and headachey, my surgery site hurt, and I just felt out of sorts – kind of like an all-day hangover. This is a bit counter-intuitive, but going for a walk or doing some form of exercise always made me feel better. I went back to my fitness group, and although I couldn’t complete my normal level of exercise, I could do much more than I expected. I guess maybe some of the benefit lay in seeing my friends, and being outside in the fresh air, but I always felt much better after every session than I did before. Plus, as soon as I started doing exercise at as vigorous a level as I could, I started to sleep better.
  5. Finally, hair loss. This was listed in the info that was provided, but I just want to share something that has made me much more comfortable: a hooded pj top, and a hooded dressing gown. The hooded pj top is especially useful, because (unlike a cap) it doesn’t get lost in the bedclothes or fall out of bed! I’m a big fan of fresh air, and having a hood makes it possible to keep a window open while I sleep, even in these cold autumn nights. My absolute favourite nightwear was found at Sussan: beautiful soft hooded gowns, and light but toasty ‘night owl’ hooded pjs. The tops and bottoms are sold separately, so you can mix and match. I think you can order most of their products online, too.


That’s about it from me. I hope this info is useful, and wish everyone well. And, dare I say it, “For those about to A/C, we salute you!” Rock on, girlfriends.

Go well,
Heather

Comments

I am having cyclophosphamide and docetaxel

Leonie Moore's picture

Hi Heather

Loved all of your comments.  As per subject title I am having 4 rounds of the above together.  I have just had dose 3 yesterday.  Docetaxel or Taxetare is a bit deadly but doable.  I have been using the cold glove treatment with it - not sure if it is offerred everywhere but I am finding it useful. (Not the first time though)  I have not had all the side effects that you have stated.  As soon as the clophosphamide starts to drip into me I get very sinusy and this "headiness" lasts a few days.  Each treatment has been different for me though - I have kept a pretty comprehensive diary.  Normally I come home from chemo and live down for a couple of days.  Today - day one after chemo - I have walked in the Survivors' Walk for Relay for Life.  Usually day 3 after chemo is my worst.  I did have acupuncture this time prior to chemo and still have the little needles active in my body.  Hopefull this is accounting for feeling better.  We will see what tomorrow brings.  I am very tired tonight.  Always the first night on Dexamenthasone- taken the day before chemo, day of chemo and the day after chemo - I do not sleep due to being too hyped up.  Usually the night of chemo I take an antihistamine to settle me and this also helps with the sinus feeling.  I get a bit of a red rash on my neck the day after chemo as well but no hot flushes.  Usually I feel pretty toxic for the first three days.  This is usually due to the fact that my bowels are clogged as well.  Not this time - hopefully the acupuncture is helping with the overall things.  Are you drinking copious amounts of water?  This seems to help a bit.  I have even still got some tastebuds this time. Usually the first 6 days I have a very furry tongue and every piece of food tastes like it has come through the back end of a dog!!!! So each time things change - very funny but  somewhat of a pleasant change.  I do think exercise helps but it is difficult when you feel lousey. I suppose we just do what we can.  If you need to know anymore about the cold glove treatment just let me know.  It was horrendous the first time but is now bearable and I have some good tips on how to handle.  Request me as contact if you need to.  XLeonie

hb's picture

Thanks Leonie! I'm a bit scared about starting the docetaxel -- but at the same time I'm so pleased to have finished the AC! The cold gloves sound interesting... I have heard of ppl having a cold cap to try to avoid hair loss but hadn't heard about the gloves -- I assume that's to stop your fingernails going soft?

And isn't it funny how we all respond differently, even to the same chemicals. I guess we shouldn't be surprised, since we all start from different places, but it still amazes me. I've had a bit of taste weirdness, but it comes and goes. I'd sort of expected that once I lost a taste it would be gone for the duration of treatment, but no!

Go well, hope the docetaxel does its job.

x


hb

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  • About:  I was 46 when diagnosed. I've been happily unmarried to Rod for more than 25 years. We have a cat, King Louis, but no kids.

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