Sunday, July 28, 2013

Chemotherapy Side Effects - Adriamycin and Cyclophosphamide (AC Chemo)

Everyone has different chemo side effects.  I thought for "fun" I would list mine here.  Adriamycin and Cyclophosphamide (Cytoxan) were given together so I don't know what side effects were from which one, but I think these two are often given together anyway.

Side Effects from Adriamycin and Cyclophosphamide Chemo
  • Tiredness, fatigue.  Not much that can be done for this
  • Yucky feeling.  Not much that can be done.
  • Red to pink urine.  I drank a lot of water and went pee as soon as the urge hit because UTI's are more common on AC Chemo.  Yes, get up in the middle of the night if you have to go.  It is worth the trouble.
  • Feeling "hungover" for a week - no motivation to do anything, hard to focus/concentrate, just want to sit there and not move.  This is probably why adriamycin is named the Red Devil.  It is horrible.  Not much to do for this one but it does go away.  Thankfully I was able to be home on disability.  If you have the chance to do the same, I say take it.  There are no medals awarded for those that continue to work and push themselves to do their normal things during chemo.
  • Hair Loss - it happens around day 14 after your first chemo.  I started to have major shedding on day 12 and cut it all off and donated it on that day.  I had a nice wig and several hats and scarfs.  It was winter so I slept in a scarf or hat to keep my head warm.
  • Heightened sense of smell - I call it my "supersonic" smelling which I understand makes no sense, but everything smelled so strongly.  I could smell cigarette smoke (which I hate anyway) from a mile away, ok maybe not a mile but from really far away.  I also couldn't stand the smell of some plants that were growing in my area.  They had this really strong musty smell that when I smelled it would feel like someone was sticking needles up my nose.  I also couldn't stand the smell of lots of food.
  • Food Aversions - oh, let me count the foods I didn't like on AC Chemo- 
    • Coffee!  I LOVE love LOVE coffee and at first had no desire for it, then after a few rounds it smelled good and I got really bad heartburn afterwards.
    • Acidic foods
    • the only things I did like were plain chicken breast, potatoes in any form (including plain lay's potato chips) apples, rice and avocado.  Avocado saved me!  So yummy, easy on the stomach and has fiber, protein and good oils.
    • soda (I'm not complaining about this one)
    • the aversions got worse with each treatment
  • Dryness - dry skin, dry mouth, thirsty,dry eyes
    • For Dry Skin, I got some really good unscented lotion and gooped it on, and often.  10 full pumps after the shower!
    • Dry Mouth - Biotene is awesome.  I could totally do a commercial for biotene cause I loved it during chemo.  Totally saved me
    • Dry Eyes - not horrible, but they were dry.  Regular eye drops worked.
    • I was thirsty often.  This isnt that bad cause drinking water on chemo is a good practice and helps with other side effects.  One time I remember drinking water and it tasted like it was the best thing in the world to me.
  • Constipation - Holy constipation batman!   I am not the praying type, but I prayed I would poop.  Yeah, it was that bad.  I ate fiber one cereal every morning and took stool softeners.  Avocado also has fiber.
  • Stomach issues.  The stereotype is that you will be vomiting all day every day.  I never vomited.  I was nauseous twice.  I had horrible heartburn/sour stomach/food aversions.  I was given pepcid and prilosec and they helped, but I still ended up eating really bland simple food and having issues.
  • Insomnia - steroids are given to prevent allergic reaction and they have their own set of side effects.  Insomnia is one of them.  I didnt have it too bad, but I did go to bed late and wake up early and would often wake up in the middle of the night too.  Insomnia is worse the first few days (when you take the steroids) but it can strike at any time.  Some people dont sleep at all for a few days.  I was lucky and did sleep.
  • Hunger/Weight gain.   This is mainly due to the steroids.  There were a few days that all I did all day was stuff my face.  And this is hard when you have a lot of food aversions and smell aversions.  But I still managed to find stuff to eat.  Cheese and pasta and avocados.  It was hard to know what would taste good/sit well.  I felt like I didnt know what foods I liked anymore and heard complaints that I didnt eat what I bought (cause it didnt sound good later or go down like I wanted it to).
  • Swallowing issues.  I actually went to Urgent Care for this one.  I couldnt swallow.  I was starving but couldnt eat.  I was thirsty but couldnt drink.  Swallowing saliva hurt.  When I couldnt swallow water I new I had to go to the doctor.  The stupid urgent care doctor looked at me and said there was nothing wrong.   It did feel like the tightness was lower down on my esophagus but he was ready to walk out without doing anything for me.  Um, no.  He gave me some lidocine rinse.   It helped but I had to gargle with it immediately before eating, then eat really fast while not being able to taste the food cause my tongue was also numb.  But I was able to get food down and make my stomach stop grumbling.  I also had a lot of protein shakes about this time.  And the swallowing issues started after the 2nd or 3rd chemo and only lasted a day or two (like day 7 or 8 past chemo)
  • Mouth Sores - I had them for a couple of days after each chemo.  Around days 7-9, same as the swallowing issues and the lidocaine rinse was applied directly to the sore and was a lifesaver.  I had one on the back of my tongue that really hurt.  
  • Anxiety about the next treatment.  I had AC every 3 weeks and the first week I felt like crap.  The second week I felt better (comparatively) but my counts were low and I had mouth sores and swallowing issues, and the last week I started to feel like me again.  Just when I started to feel good is when I would have the next treatment.  Imagine getting the worst flu of your life, being in bed for 2 weeks then knowing you will get this "flu" again.   It messes with your head.  I even cried as the nurse administered chemo number three cause I did not want to feel bad again.  Thankfully that round had the fewest side effects.Feeling isolated - people were trying to contact me and make plans, however it was hard because I didnt know how I would feel from day to day.  Every day was different.  By the last round I got better at predicting how I would feel, but there were still surprises.
  • I have some scarring on my arm that I had the infusion.  My arm was falling asleep during my second Adriamycin infusion.  The nurse stopped and had me move my fingers but there is still some scarring.  I had most of my infusions with the IV on my left hand.  I have some scarring from the taxol too and I cant wear my ring on that finger.  I think it is in part because there is some damage and in part because of the weight gain from Taxol.

These are the side effects I had after my chemos and how I survived them.  I created this post to help someone else that is either going through chemo or planning to do it soon.  When I was first diagnosed I was looking for real stories like this because the doctors tell you ALL the side effects that you could have and most people do not have all of them.

I am almost 8 months post my last chemo (I had Taxotere/taxol after AC) and I am doing well.  My hair is growing, slowly.  My stomach is mostly back to normal (I do have some issues with really acidic or spicy foods but it is rare and manageable), my mouth is mostly normal (still dont like soda and cola makes my mouth feel tender afterwards) and I cant wear my ring, well I can wear it but it is hard to take it off.  I am not the same as I was before chemo but I am doing much better and it is very manageable.

3 comments:

  1. Thanks. This does help others going through the same.

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  2. Thanks for having written this. You continue to help people who're going through the same. Though I hope this is all behind you now...

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  3. Thank you for this! My second AC treatment is on Monday, I'm doing 4 treatments in 8 weeks and I needed something like this instead of the medical garbage to read. I have 12 weeks of Taxol after that, how much weight gain if I may ask? I'm down 13 lbs after the first AC treatment in a week... I don't want to loose anymore and wouldn't mind if I didn't gain that back either actually.

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