Weird Side Effects 101

[BeanieRN]

So, it seems lately we have a lot of questions regading side effects. I know there is a lot of data out there telling us the "normal" side effects...and honestly I think we all know that nausea is a side effect of chemo. But what about those rare "crazy fun" side effects like (to steal from todays post) swollen red face syndrome.

Maybe if we compile a list of all the weird side effects we've had, it will be easier for those who are experiencing the same thing.I'm talking everything...from the tippy top of our baldy heads...to the dredded nether regions....all the way down to the soles of our feet. I'll start.

1. My scalp always hurt before my hair started to fall out. Even now (when it falls out less) my scalp hurts about 4-5 days post chemo.

2. Crushing sternal pain from Neulasta...I believe Brian referred to it as some sort of bird ripping through your chest. Not an exact quote, sorry.

3. The back of my legs hurt (hamstring area) from all the sitting on the toilet I do. You think my quads would be huge by now from all the sitting down and standing up I do. Ok, so not really a side effect, but fun none-the-less.

4. In reference to item 3, lots of toilet sitting, whether it be the days after chemo when I've had an ocean of water in my body and I pee every half hour...or...even better that feeling that you think your going to go poo (thats right I said it), but then the sad realization that it ain't gonna happen after 3 days of nothin. FUN stuff.

5. My thumbs hurt. Yes, my thumbs, or more specifically my thumbnails. They've started hurting lately at the slightest touch and they get really hot sometimes (weird I know). I think this may be in relation to the other "nail" posts lately...meaning they're getting really sensitive, before the big fall off or splitting or whatever our nails will do.

ok, thats my start...I'm sure there are many more that I can't think of right now (thank you chemo brain), so I may add on later.

sooo, now its your turn. chip in and enjoy recalling those wonderous side effects that they don't tell us about

[attackmonkey]

- My finger and toenails started to come unstuck towards the end of chemo, made it impossible to use nails as leverage, if I'd have gone to 8 cycles, I suspect I'd have been billy no nails.......

- Ondansetron (no idea of the US name, it's an antiemtic) gave me intractible hiccups, I kid ye not, for the 48 hours I had to take it after chemo, I was like the guy from the simpsons going 'hic, kill, hic me', it was a nightmare.

- The chemo made my dreams REALLY vivid. Great for the dreams about Christina Ricci and the hot tub, not so good for the nightmares. I spent almost an hour trying to explain to my girlfriend that the reason I was tired was that I'd been fighting zombies all night. I believed it too. Strangeness.

I'll add more if I can think of any other really odd side effects I got.

[heatherjb]

1. I have really weird lines all over my arms and back. Apparently caused by the Bleomycin. The doctors swear that they are from scratching during chemo, but some of the lines are in places where I cant even reach. Still have them over 4 years later.

2. I had horrible (and I mean horrible) leg cramps and charlie horses during chemo. I'm not talking bone pain (I didn't have Neupogen or Neulasta). They were terrible and made it really hard to sleep, even with muscle relaxers and pain killers.

3. I had bad stomach cramping and pains during chemo. Had to start seeing a GI doc and get medication to help.

[jess_march]

Hey Mel,

1. Yup. Scalp hurt forever it seemed. Didn't stop until a few weeks after my last chemo (around the time I started growing hair again)

2.Didn't have this but I did have crushing pains in my center spine and neck and jaw. They came in waves and were so painful I used to have to do lamaze breathing to get through them. Doc said it was Vinblastine wreaking havoc on my nerves. After 7 chemos, I finally figured out that advil was the trick. Even 3 months after chemo, I still occasionally get these pains. I call them chemo flashbacks.

4. Yawp, not a fun one. I got through with stool softener (starting the night before chemo) and strong coffee. That combination was essential for me!

5. Ohh I relate SO MUCH to this one!!! I could cry a river for you. I had the worst time with my nails. Thumbs were worst and forefingers next. I couldn't open a jar or peel off a label for months and months. Eventually one of my thumbnails partly detached. It's still struggling along now and I'm waiting for a healthy nail to finally grow in. One of my big toenails also tanked. Now it's growing crooked. Sigh. Oh the joys.

On the flipside I had almost no mouth soreness minus the very first chemo. I used Rembrandts toothpaste for Canker Sores (recommended to me by Anne Marie) and maybe that was the trick because I never had another problem once I started it.

All I can say is that it does end eventually!!!

Jess

[Susie9552]

The Neulasta is killer for me, too - worse than the chemo. I have black, vertical lines on my fingernails and dark toenails.

Mel, as far as that elimination problem, my onc told me to use MiraLax or its generic, Glycolax. It's no longer a prescription, so you can get it anywhere. I mix it with juice everyday, and there are no problems. Without it, I was a mess.

Let's see what else - sleep problems, mood swings, weird taste in my mouth, hot flashes. I could go on and on! Actually, every "common" side effect that was on the drug printouts that I was given, I was fortunate enough to get.

We just have to keep the goal in mind. There are so many wonderful people on this forum that have made it through. We will, too!

[jenb]

I think I have had a lot of what everyone else has mentioned so far. The constipation was one of the worst. I am now a BIG fan of Phillips and Senna for this issue.

The one that's been bothering me lately has been neuropathy (spelling). It started just with one hand tingling and then just 3 toes on one foot (wierd huh). Now after 3 treatments both of my hands are tingling and both feet. It makes it wierd to go to work.

For those that haven't experienced this, think of what it feels like when something falls asleep on you like your arm or leg..but then the tingling is 24x7..ughh.

Jen

[Chemopalooza]

My scalp hurts often as well... what a crappy side effect

Also, now that you mention the nails detaching, I think that's happening right now with my thumb, glad you mentioned it!

My eyebrows stopped growing - I got them waxed a month into chemo and they stayed that way until a few weeks ago.

Teeth sensitivity - I think I'll be fighting it until I'm done with chemo...I now use dentist prescribed toothpaste, but I started using it only a month ago and I think I'm too late

Going with the constipation --- I have figured out that you have to have a running start before chemo otherwise nothing works, I now take senna the night before and morning of chemo to make sure things keep working...

On the same topic - hemroids...yep I got them! I had never even been constipated before chemo, then I got roids...I'm such an old lady!

Heartburn...I have to take prilosec 2x a day to fight it

Super dry finger tips and face for about 3 days after chemo

I'm sure there are more I'll think of, but that's a start!

[julieannie]

I had the scalp tinglies too.

1. The scratch marks that will never leave.

2. I had blue spots show up on my hands. It looked like they were in my veins and the onc said he'd never heard of it.

3. Crushing back pain. I couldn't sit up straight or lie flat or it would kill my lower back. Even a year post-tx I still have awful back pain. I walk a mile each day and can't do any more due to my back and yoga hasn't helped either.

4. Starting about 13 months post-tx I started getting bone pain flashbacks, radiating outwards from my bone marrow biopsy site.

5. Not just chemo brain but spoonerisms too. It's like I lost the ability to speak some days.

6. hiccups! they attacked me during chemo

[jam]

One of my favorite was the "head racing". It usually happened at night when I was acting like I was sleeping. My brain would get cranked up and just RACE. One night, I folded my pool cover in my head for almost 2 hours. I now know every possible way to fold my pool cover, both by myself, and with help - maybe I can use that one on Jeopardy some day. "Give me Pool Cover Folding for $500, Alex."

2 hours. *whew*

[laurie210]

lol john u made me laugh, its funny cuz last night i couldnt fall asleep for the life of me! i even took a bendrell, but it was no help. but its odd how you think of the most randomist ( is that a word? lol) things.... well if i need help figuring out how to fold up my cover by myself i know who to contact