what side effects were you NOT told about...

Heatherbelle

JuJu54 said:

I have been reading this
I have been reading this message board since my diagnosis in April 2010. I have found so much information and support here! This string made me decide to post to try and help the newbies just like I found help here. I finished chemo on Oct. 7 and started rads last Monday. I have had many side effects that I found out about here! The dry/tearing eyes, constant runny nose (still have that with Herceptin - hoping it will go away!). I also had the Taxol rash on my hands and up my arms- which my onc told me was very rare, and "should" go away. My hands were very dry but the rash wasn't itchy, it just looked like I had gloves on. Now that chemo is over, the rash isn't red any more, but I have dark pigmentation where the rash was. Thank goodness it's cold enough now to wear long sleeves so it's not that noticeable! Hoping it fades by next spring/summer. (Did anyone else have this? Does it fade?). Didn't have neurapathy, but my fingernails lifted and HURT like crazy! They stopped hurting about 2 weeks after chemo stopped, and are growing out nicely now. Thank you for all the info and for starting this string!

Hi JuJu-
I also had the rash
Hi JuJu-
I also had the rash on my hands, got it from each of my 2 Taxotere infusions. First got red patches on the palms & tops of my hands, then it got painful, to where I could barely use my hands, Onc gave me steroids for it & i used Eucerin lotion on it. Then it got itchy, dried out, and my skin actually peeled off. I got it on my feet, too, but it wasn't painful, just my heels got red, dried out, and are just now (3 1/2 weeks after last chemo) starting to peel. The spots on the tops of my hands where I had the rash, you can't even tell anymore. The palms of my hands, though, still have a faint redness to them.
The dry/runny eyes has been one of the worst side effects for me. Either they would be so dry and itchy, or they would run non-stop & i could barely see!
Also, I never took into consideration that I might lose the hairs inside my nose. I did, and my nose has been running the entire time i was on chemo, and I still have to carry tissues with me wherever I go.
Just a little "ps" to anyone reading this thread & just starting chemo - God bless you. Chemo has been the hardest thing I've ever had to do. But, I did it, and the time went by really fast, and I was done with it before I knew it. It's do-able, and going through it, you will find a strength within yourself that you didn't know was there!
*hugs*
Heather

jendrey

would've not taken chemo if..
That as a result of chemotherapy I'd go into premature menopause.

I always sort of thought it was just crazy that a lot of women get pregnant and have a baby when they have no resources in place to support themselves, let alone a baby and all the costs that go with it for next 2 decades. (can we say octomom?!!) So, you know I thought I'd wait until I reached a time in my life when I could actually afford it.

My bad.

All my doctor said was that I might miss a couple of periods. Maybe.


Oh, and the weight gain. Went from always weighing about 110 pounds to 142 pounds THIS week.

JuJu54

Heatherbelle said:

Hi JuJu-
I also had the rash
Hi JuJu-
I also had the rash on my hands, got it from each of my 2 Taxotere infusions. First got red patches on the palms & tops of my hands, then it got painful, to where I could barely use my hands, Onc gave me steroids for it & i used Eucerin lotion on it. Then it got itchy, dried out, and my skin actually peeled off. I got it on my feet, too, but it wasn't painful, just my heels got red, dried out, and are just now (3 1/2 weeks after last chemo) starting to peel. The spots on the tops of my hands where I had the rash, you can't even tell anymore. The palms of my hands, though, still have a faint redness to them.
The dry/runny eyes has been one of the worst side effects for me. Either they would be so dry and itchy, or they would run non-stop & i could barely see!
Also, I never took into consideration that I might lose the hairs inside my nose. I did, and my nose has been running the entire time i was on chemo, and I still have to carry tissues with me wherever I go.
Just a little "ps" to anyone reading this thread & just starting chemo - God bless you. Chemo has been the hardest thing I've ever had to do. But, I did it, and the time went by really fast, and I was done with it before I knew it. It's do-able, and going through it, you will find a strength within yourself that you didn't know was there!
*hugs*
Heather

Thank you Heatherbelle. My
Thank you Heatherbelle. My rash never hurt or itched, just very unsightly, even now with the lingering brownish skin where the rash was. And it was just on my hands - my feet were spared. I, too, am a foodie so the loss of taste was very difficult - but that has pretty much come back thank goodness!

I couldn't agree more with you - it did go fast, and was definitely doable. Not pleasant, but doable. I read somewhere that you don't have to be brave to get through chemo, you just have to show up. That helped me on the more difficult days. As you said, you find the strength from somewhere!

fancy0416

fancy0416 said:

OMG...FINGERNAILS FALLING OFF!!!
Now there's a new one I didn't read about...all doable, all doable, all doable...and my onc just told that he'd heard of a just a few of his patients that had gotten stinging (they insist on calling it "tingling") feet. Prescribed otc glutamate...tingling, my keester. I got so ticked at having to alleviate the pain by sitting on my bottom, that I got on my treadmill and walked, very slooowly, for a half hour. Maybe that would make it just tingle:)

Follow up on the painful soles of my feet
Well, boggled a pharmacist with the glutamate request, made her remember her bio-chem classes...went to a natural food store and started looking up other sources and found it in the form of l-glutamine. Came in 500 mg tabs and is used for folks that work out too much. I've been trying to take the 3 gr daily, which is 6 tabs, between meals and day two of doing the best I could to down the 2-3 grams, my feet are feeling better! Not sure if it's just the chemo wearing off, as I am at the end of the week off in between A/C treatments, next one is Thursday, but it may be the l-glutamine, so I'm going to continue to take it and see if it hits me again. Also comes in powder form from supplement stores. Cheaper that way. No listed side effects I could find online, as it is a "non-essential" amino acid. Yeah!

And I love the notion that the Taxol might actually improve my vision! Can't wait to ask my onc about that one! May have to get some type of prescription glasses just for my computer as I am having a really bad time and need to see it for working, practically all day.

This is almost, I say almost, getting to be a weird sort of challenge to see what "side effect of the week" I can overcome. So many of you have already been there and done that...

sohardbnme

jendrey said:

would've not taken chemo if..
That as a result of chemotherapy I'd go into premature menopause.

I always sort of thought it was just crazy that a lot of women get pregnant and have a baby when they have no resources in place to support themselves, let alone a baby and all the costs that go with it for next 2 decades. (can we say octomom?!!) So, you know I thought I'd wait until I reached a time in my life when I could actually afford it.

My bad.

All my doctor said was that I might miss a couple of periods. Maybe.


Oh, and the weight gain. Went from always weighing about 110 pounds to 142 pounds THIS week.

eyes
My eyes twitch on TCH...

joannstar

jendrey said:

would've not taken chemo if..
That as a result of chemotherapy I'd go into premature menopause.

I always sort of thought it was just crazy that a lot of women get pregnant and have a baby when they have no resources in place to support themselves, let alone a baby and all the costs that go with it for next 2 decades. (can we say octomom?!!) So, you know I thought I'd wait until I reached a time in my life when I could actually afford it.

My bad.

All my doctor said was that I might miss a couple of periods. Maybe.


Oh, and the weight gain. Went from always weighing about 110 pounds to 142 pounds THIS week.

Chemo & weight gain
This is my first post. I've gotten a lot of strength from reading these threads. I have just completed my 3rd chemo treatment of 6 before 33 radiation treatments. I had 2 lumpectomies in August (because the margins weren't clean) after being diagnosed as Stage 1B Triple negative.
My side effects haven't been too bad--feeling a bit queasy but no real nausea. I did develop a rash week 2 of the 2nd treatment that required steroids. The rash was on my arms, chest and back of my knees. At the same time my left eye was bloodshot and twitching.
I started to lose my hair on day 17 of the first treatment.
But the most frustrating side effect is the weight gain. I'm not helping it by indulging myself in any food that seems like it will satisfy me. Some days I only want pasta with butter and garlic--nothing else appeals.
I'm a newlywed (married for the first time on 2/14/10 at age 57) and the loss of libido is also not a pleasant side effect, but at least I was warned and I have a loving partner who is very understanding.
I'm working through the treatment. I have chemo on Fridays (3 week interval) and then the Nulasta shot on Sundays which totally knocks me out for the day. I find Tuesday to be the roughest day and have had to stay home from work and rest in bed. But other than that, it has been ok. I am squinting at the computer monitor, but I can put up with that for a while.
I just want this phase to be over so that I can reclaim my life!

ShirleyCurls

My scalph did not hurt, but
My scalph did not hurt, but itched a lot.

Have perperial neuropathy.

I also have lymphdema, learned that there is no cure and its impact on your life from a phamplet, neither my oncologist nor my physical therapist covered this.

I have numbness in my chin and mouth. My oncologist blames the radition; my radiologist blames the chemo, but I have to live with it. Sigh.

Blurry vision must have been very scary.