The Side Effects Of Chemo

It occurred to me that while I briefly went over the side effects I’d be experiencing when I first started chemo, I never really went in depth with what it feels like. So today I thought I’d list out all the fun things that come with chemo to create a better understanding of it. Keep in mind, this is just for my Hodgkin’s ABVD treatments. Some people experience additional side effects or don’t get any of the ones I’m listing at all. Concentration of dose, length of treatment, and of course individual reaction to the drugs all play large factors in it too!

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1. Nausea. I have actually not experienced a lot of nausea thanks to my team of anti-nausea meds on the side – zofran, decadron, and maxeran. If anything, I sometimes feel like I do after a long road trip. A little gross and weak, but nothing like the bad hangover I expected it to be. The room never spins, I don’t fall into walls, and I don’t get beer goggles that make me hit on unattractive men.

2. Breaking down of the stomach lining. As you know, chemotherapy kills fast growing cells. That includes the cancerous cells and the healthy cells. The lining of our stomachs is made up of fast growing cells. This is actually what causes the nausea, but I find I get different side effects from this. Sometimes stomach pains when I eat certain foods, eat too quickly, or go too long without eating at all. The worst is when I get a burning sensation from my tummy to my throat. I don’t know what this is, but it’s the only time I ever feel like I’m going to throw up.

3. Hair loss. Okay, so everyone knows chemo kills the hair on a person’s head because it’s made up of fast growing cells as well. That hair is usually first to go, but what a lot of people don’t realize (or I didn’t anyway) is that chemo can kill the hair all over the body. From the forearms to down under. Losing the hair on my head sucks, not needing to shave or wax is at least slight bonus.

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4. Mouth sores. The lining of your mouth is made up of fast growing cells too! I’ve been lucky that I haven’t had any mouth sores yet. But I do get extra pain from all four of my wisdom teeth growing in. They’re growing in normally, thank goodness, but I’m not allowed to go to a dentist on chemo. Cuts in the mouth don’t close up as quickly as other places, and being in the mouth makes them much more susceptible to getting infected.

5. Cold sores. I haven’t gotten these yet either, and let’s hope I don’t get them at all! I think the weakened immune system has something to do with an increase of cold sores with chemo patients. Speaking of which…

6. Fever/Neutropenia - I’ve talked about my weakened immune system a lot. It’s different with every chemo regimen, but mine in particular zaps my white blood cells, which are essential for fighting off sickness. My immune system is consistently around 1/10th of a normal person’s. Because of this I have to take my temperature every day. If it goes up to 101F, I have to go to the hospital as it could be a sign of infection. Simple illnesses can blow up into very big ones on chemo because my body does not have the resources to keep it under control. I actually have a piece of paper that will let me jump the line in the emergency room and get admitted right away. This is currently my worst fear as I absolutely do not want to be an inpatient again – especially in an isolation room.

7. Numbness – I don’t get this a whole lot, but sometimes my fingers and toes will get a little numb or tingly. I’ve heard of this being really bad with other patients though.

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8. Fatigue – This has been one of the worst side effects for me, and many other people. The kind of fatigue you get on chemo is nowhere near the kind of fatigue you would get in every day life. It’s not like I feel tired and it will go away with a nap or a good night’s sleep. It the kind of fatigue that can be completely debilitating. Often times I will lay completely still and feel like I don’t even have the energy to move an arm. Instead of being hit by a mack truck, I feel like it has run back and forth over my eyelids. Doing something like bringing the laundry to the basement is enough to tire me out for the following hour. It’s intense!

9. Diarrhea/Constipation – I debated mentioning this because it’s TMI. I don’t want to read about poop on other blogs, let alone write about it on my own blog. But it’s kind of a big deal to those who suffer from it. I usually only experience the latter, and let me tell you, it SUCKS. Big time. I never gave much thought to those who complained of constipation before, but it is really no way to live. I have to take laxatives every day, and eating veggies and exercise helps too.

10. Chemo fog – In other words, I’m losing my mind. For years, people thought chemo fog was a result of the stress of chemo. But newer research is showing that it’s a very real thing. In fact, my ABVD drugs can actually sneak up through the vessels that protect my brain from the rest of my body. It’s made me forgetful, I can’t remember where I put things, my appointments, what I did yesterday, or think of words mid-sentence. I have a hard time reading and retaining information. Lord knows how many e-mails I’ve forgotten to respond to. Basically, my Nana is smarter than me now.

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11. Food restrictions – I finally met with the oncology nutritionist and learned a little more about what I should and shouldn’t be eating! Surprisingly, nothing with a strong concentration of anti-oxidants or it could mess with what the chemo is doing to my red blood cells. That includes no green tea! Because of my low immune system, I can’t eat foods that may contain bacteria. So certain fruits and veggies are iffy, or need to be washed really well. No sushi or shellfish, sliced meats, etc. Nothing too crunchy that could cut my mouth, and nothing citrus-y because it makes my mouth hurt. I also have to double my calcium and take in extra protein to protect my bones and muscles from the chemicals in the chemo.

12. Dry skin – This hasn’t been *too* bad for me yet, but I do find my skin has become a lot more sensitive on the chemo. I’ve been getting skin reactions to things I never did before and breaking out into a rash after touching something is quite common for me now.

13. Burn easily – On that note, chemo makes your skin more sensitive to the sun too. I never got any burns this summer despite spending a fair bit of time out in the sun, but I also slathered on the sunscreen religiously.

14. Weight gain - Before starting chemo, I was scared I’d turn into this rail thin sickly person because that’s what I associated chemo with. Truth is, because of the anti-nausea meds these days, most people keep their appetites while getting treatment. Pair that with a decrease in activity and a slew of steroids that retain fluids, and you get weight gain. Fabulous.

15. Bone pain – This is not a side effect caused by the chemo, but rather a side effect of a drug used to treat the side effect of low white blood cells. Gotta love how that works. The additional drugs I’m taking on top of the chemo have side effects too, but I’m including this one because it’s by far one of the worst. Because neupogen stimulates cell grown within my bones, it causes a pain deep inside my skeleton. Mostly my pelvis, spine, thighs, and shoulders. Some days it’s quite manageable, other days it leaves me in bed writhing in pain and resorting to pain killers. To me, there’s few kinds of pain worse than that which happens in your bones.

And with that, I am off to bed! I am feeling particularly sucky after chemo #6 yesterday. After looking at this list, it’s no surprise why!

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Posted on September 29, 2011, in Cancer and tagged , , , . Bookmark the permalink. 31 Comments.

  1. uhhhhhhh I’ve been talking about poop on my blog (hanging head in shame) … but mostly in the form of “digestive issues” and I’m assuming everyone knows the general idea about what I’m talking about … SORRY did I TMI you :P

    but my “digestive issues” are really affecting what I eat, and what I eat goes on the blog, soooooooooooooooo

    righty – o – then

    FEEL BETTER SOON so you can french toast something (do the cupcake, really just do it!)

  2. Susan, I read your blog religiously and even though I don’t comment too much I want you to know that I am thinking and praying for you all of the time. Colleen

  3. I am so sorry you are going through all of this. You truly are one of the strongest people I know.. keep you head up and keep fighting!

  4. I hope you’re feeling better soon!!

  5. Susan, I’m no doctor (except as in Dr. Mom), but it sounds like your experience some acid reflex (related to your stomach lining). Check with your doctor to see if you can take some over the counter anti-acids. As a long time sufferer of G.E.R.D. a.k.a. acid reflux, I know it’s not a great thing to deal with. It can have long term side effects like damage to your esophagus and damage to the enamel of your teeth. Not to give more to worry about, sheesh.

    We’re all still here supporting you.

    • That’s what I thought it could be too! It’s really only bad the first few days following chemo. But now I know it’s worth mentioning to my doctor next time.

  6. Hi! I’ve never commented before, but I’ve been reading since the big fundraiser. I just want you to know that you are truly inspirational. I truly admire your strength, humor, and honesty. Prayers all the way from Pennsylvania!

  7. I have gastritis, esophagitis, and duodenitis…when it flares it makes me burn all the way to my throat as you describe. It’s pretty miserable! I hate that you have to go through all these unpleasant effects. Wish there was something to heal you without hurting you!

  8. Sounds tough! Thanks for the details… gives us more perspective. Glad that you still have an appetite. I think ultimately, that weight gain is temporary and better than being rail-thin and pukey while you’re healing.

  9. Thanks for sharing – I often wonder how similar chemo side effects are on different regimens. Mine are quite similar, particularly the GI effects :/ Ugh. I haven’t had neupogen yet but I think my avoidance of it may be up after 8 treatments. Not looking forward to the bone pain. Hang in there – you are on a seriously tough regimen and doing awesome. I’m amazed you blog every day!! That alone gets you serious kudos :)

  10. Oh yeah – about the heartburn type thing – my onc recommended omeprazole (prilosec) for that. It can take a few days to a week to really work, but it is supposed to be effective.

  11. This all sounds so rough! If you believe in God, know that He is doing many great works in you! Through the trials is when we learn patience and perserverance. Please know that you’re always in my prayers!

  12. Hi Susan!
    I completely relate to you list of side affects. I have experienced these (in no particular order) during chemo:

    Nausea
    Hair Loss
    Diarrhea
    Chemo Fog
    Fatigue-Extreme Exhaustion
    Dry Skin
    Bone Pain
    Weight Gain
    Mouth sores
    Numbness
    Food Restrictions
    Fever

    And, I have experienced these after chemo:

    Nausea–ended up getting my gallbladder out and they link it to my chemo
    Hair Loss–It took a while but my hair came back thicker than ever (I did not get any curls, which can happen that your hair texture changes)
    Diarrhea–continue to suffer from major digestive issues
    Chemo Fog-it does not go away right away
    Fatigue-I still get REALLY tired
    Dry Skin-My skin and hair used to be so oily, but now it is dry
    Weight loss–I was able to become active again and the weight came off eventually…I gained 25-30 pounds during chemo. Thank you carbs! :-)

    One thing that is not researched much is chemo-after affects. Many patients have issues for years, so I find it’s good to keep track of symptoms and find other post-chemo survivors to talk with. Good luck on your next chemo! I hope you are feeling better soon.

    Sarah

  13. Thank you for posting this! Sounds weird to say that but until recently {when I moved away from my old job} I worked with a woman who was going through chemo. The cancer was caught early enough that she was going through a dosage of chemo that allowed her to work about part time. She would occassionally elude to what she was going through but never in great detail. All of this information from you really helps me understand exactly what she was dealing with… I think I’ll send her a quick “hello” via email, haven’t talked to her in awhile!

    Stay strong!

  14. dear susan. I have been reading your blogs every day every morning (I currently live in southern america) for the past months. I just wanted to let you know that there are people out there who are thinking of you and who admire you for your strengths. I really really hope that you will get through this! I don’t feel I am in the position to give advice, but I think maintaining a positive attitude in all of this is a big factor… so keep up the good spirit, never give up hope. you are a huge inspiration for many! lots of hugs from colombia. leni

  15. Hi Susan, I think this post is really important. Those of us who know people in chemo can only IMAGINE the effect it has on the patient and what may potentially be happening that they don’t share. It gives us better understanding and maybe there is some little thing we can do to help that we didn’t know before. Also, I don’t think talking about poop is TMI…not in this context anyway. (now, if “What I Ate Wednesday” became “Look at my Poop Wednesday”, well, that may be a different comment!!) All the best EVERY day, as you are in treatment and move forward into recovery!!!!! Sending warm wishes your way from British Columbia!!

  16. Been lurking for a while but at the thought that this might even be slightly useful figured I should comment.

    My mom underwent chemo and had the horrible acid reflux. She had no luck with Prilosec but found Nexium to be a dream for helping symptoms. Ultimately it all lead to her gallbladder being removed a few years post-cancer so gallbladder is something to keep an eye on even years after chemo. She took an over the counter supplement for the tingling and numbness in her hands and feet. It’s a powder that bodybuilders use but her oncologist recommended it….GAH…I think it was glutamine(??). You may want to check on that with your doctor, for what it’s worth.

    Reading your blog and wishing you peace and healing.

    • Thank you so much for the tips Laura! Am definitely bringing up the possible acid reflux thing with my oncologist when I see him in 2 weeks. Especially if it could lead to gallbladder issues in the future. Very useful info for me!

  17. HUGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  18. If I didn’t know better I’d think you were making a list of what happens to you during pregnancy (with a few exceptions)! But really, thank you as always for giving us a glimpse into the REAL story of cancer!

    • I see A LOT of similarities between my chemo side effects and what I know women to go through during pregnancy! Especially the food cravings, nausea, and fatigue. I actually forgot to include “infertility” in the side effect list. But that’s not a guarantee. If I ever do get pregnant I should be a pro at these symptoms by then ;)

  19. The one that made me think of pregnancy was actually constipation hahahaha :D

  20. Thanks for being frank, even about the poop stuff. If no one discusses it, cancer and its treatment will continue to be a scary mystery when really, many, many people are experiencing this on a daily basis. Most of us at one point or another have known someone with cancer, so having this information can help us communicate better with them and understand their needs and challenges.

  21. You are amazing.

    This post demystifies what you’re going through and makes it less scary, if that’s okay to even say since you’re the one going through it. You are amazing. Thanks for sharing.

  22. I dealt with constipation once after getting my wisdom teeth taken out (TMI? Sorry!) and it was one of the most awful and painful things I’ve ever dealt with!!

    The fatigue sounds rough :( I have been so fatigued it hurts/I can’t move when I’ve been really, really sick before and it’s an awful feeling.

    Hang in there! You’re halfway done!

  23. This was TOTALLY going to be my blog entry tonight…I’m not even kidding. I think I’ll just link to yours instead LOL…is that okay?

  24. This is a great and informative post!!! I nodded when I read your sections on constipation and weight gain. As if having cancer wasn’t bad enough… *hugs*

  25. Re: constipation. My chemo nurse told me to take a stool softner morning, noon, dinner and bedtime until it worked. Check with your nurse. This advice was very valuable to me.

  26. Such a useful list for others. I’m glad that you aren’t experiencing all of these. Thank goodness for small favors right?

    Yah, the TMI subject can be rough. I think that my Dad’s #1 complaint (and daily battle) was with digestive issues. He ended up buying some pills on the internet that really helped. Well, since my Dad was a bit vain, I’d have to take that back: his #1 complaint was the hair loss.

    I’m surprised to hear that these things can last years. Let’s hope that’s the exception and not the rule. :-)

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