what side effects were you NOT told about...

CarrWilson

linpsu said:

side effects they don't tell you about
I've learned more from all of you on this site than from my oncologist or her physician's assistant whose speficic job was to teach me about chemo and its side effects. They give you a print-out from the drug company with a list of some side effects, but not ALL of them. Of course, the side effects I've gotten, in addition to the regular ones that everyone has, haven't been on any of those lists. When my feet and hands were bright red, blistered, peeling, and burning like crazy, my oncologist said "I've never had a patient with this - I don't know what it is". I could barely walk and I couldn't hold a fork to eat or hold a pen to write. This showed up after 2 of 4 rounds of A/C. Now I'm on my 2nd round of Taxol, and still have this, although not as bad. I had to do research on the ACS site and find out info about this and I printed it out and gave it to my oncologist - she seemed surprised to hear about it. Then I saw on this site some other ladies who had similar side effects.
Another much less serious side effect that they didn't tell me about was the eye thing. The 4th day after my first A/C, I woke up with my eyes glued shut. As I am a preschool teacher, I assumed one of my little darlings passed on pink-eye to me. My P.A. assured my prior to chemo that I wouldn't have issues with my eyes - seemed surprised that I even asked - but I do have seasonal allergies that affect my eyes and I asked her if she thought I could still wear my contacts after chemo started. My eyes have been glued shut every morning since. Again, after reseaching side effects on the ACS site and hearing from some of you, conjunctivitis is indeed a side effect. I am just so disturbed and surprised that the doctors don't seem to be aware of these things. And thanks for telling me about the dripping nose - it never even occurred to me why that was happening.
Thanks for letting me vent - sorry if I sound like I'm complaining. It's just been frustrating that the medical professionals can't be upfront about all of the side effects.

Rash
I am so glad that this thread was started. I loved the Nurse Practitioner at my Onc's office, she really explained a lot, gave me the print out of side effects, and a big book of possible SE. She also came to check on me every treatment, as well as the Onc's nurse. They also told me to call if I had any problems. Everything was breezing right along until the third treatment---and I got the "RASH". I called and told the NP about a bright red rash on both of my hands, arms and up past my elbows. It looked like I was wearing long lipstick red evening gloves. When I finally went in they said, "Hmmmm, never saw this before" and called in several other staff to "look". I had a family function and it was very hot, so I wore a short sleeve shirt and my family kept asking "what the heck was wrong with my arms". I guess any conversation to overlook my bald head. hee hee.

They sent me to a dermatologist, and she actually "GOOGLED", the SE of my chemo drugs right in front of me. I was very surprised. She told me that the chemo was working on my skin cancers. (very reassuring right???) and gave me a super strong steriod cream with extreme SE on the tube that scared me even more. I asked if I had skin cancer should I be trying to clear it up with steriod cream? She said "yes", I am not sure I buy her diagnosis. Just another lovely unknown.... and don't get me started on the diarrhea and constipation, will I ever be normal again?

Caution to any newbies: Even with all this it was still very doable and I am glad to fight this beast with whatever they have in their arsonal.

carkris

CypressCynthia said:

This sounds stupid and
This sounds stupid and trivial compared to many of the side effects, but, when I was first diagnosed I was 33, and no one ever mentioned that tamoxifen would obliterate my libido. That was very hard on me and my husband--especially being that young. But we survived it, and 23 years later, are still going strong.

i also got the taxol rash,
i also got the taxol rash, tamoxifen hasnt decreased my libido, but thehealing rectal fissure has LOL!!!!
Cypress glad you and hubby have done well.

waffle8

carkris said:

i also got the taxol rash,
i also got the taxol rash, tamoxifen hasnt decreased my libido, but thehealing rectal fissure has LOL!!!!
Cypress glad you and hubby have done well.

These side effects are
These side effects are something else...I am in a study so the nurse gives me a printout calendar to keep track of my symptoms..Seems like everyday I am a writing new one...But I have to say that the worse for me is a toss up either the Nausea or yeast inf.. Can you itch yourself to death?lol But I think I will change my mind the worse one is I can't seem to spell any more....

cahjah75

If
I'm having simple mastectomies with no lymph node involvement why would it be necessary to have a drain and not be able to raise my arms? I can't wear button front shirts because of shoulder surgery. I also wear a CPAP to bed that I have to put on my head. Does everyone have trouble raising their arms????

Also, I'm 11 yrs postmenopause and I'm still having hot flashes and always warmer than most. I usually wear stretchy sleeveless tops. Do you think this arm issue is going to prevent me from getting this kind of shirt on???

I'm starting to panic, Char

New Flower

cahjah75 said:

If
I'm having simple mastectomies with no lymph node involvement why would it be necessary to have a drain and not be able to raise my arms? I can't wear button front shirts because of shoulder surgery. I also wear a CPAP to bed that I have to put on my head. Does everyone have trouble raising their arms????

Also, I'm 11 yrs postmenopause and I'm still having hot flashes and always warmer than most. I usually wear stretchy sleeveless tops. Do you think this arm issue is going to prevent me from getting this kind of shirt on???

I'm starting to panic, Char

Char
yes, after mastectomy you need a loose button or zipper shirt. do not panic you have enough time. I used my old shirts and my husband's too.
Good luck

MOrtiz0810

Thank you!
Thank you for bringing this topic up! It has been extremely useful to me, as I will be starting Chemo probably within the next few weeks.
My Oncologist explained to me the common SE's during my first consultation with him, but what I have read from the BC family is that there are a lot more SE's that might occur, so I'm glad that I'm preparing myself with this knowledge beforehand!

One of my major concerns, and maybe I should post this separately, to get everyones feedback, is how are you able to deal with full-time career and these SE's ? My problem is that I'm not sure whether I should even work during Chemo, because my understanding is that the immune can be very low, and I have to take trains and taxi's in NYC, and I also have to conduct meetings in a room that usually has anywhere from 20 to 100 people in attendance.

I have a lot of family members that are telling me that I should continue on disability during the Chemo, so to prevent from getting even worse. Any feedback on this is greatly appreciated!

jo jo

MOrtiz0810 said:

Thank you!
Thank you for bringing this topic up! It has been extremely useful to me, as I will be starting Chemo probably within the next few weeks.
My Oncologist explained to me the common SE's during my first consultation with him, but what I have read from the BC family is that there are a lot more SE's that might occur, so I'm glad that I'm preparing myself with this knowledge beforehand!

One of my major concerns, and maybe I should post this separately, to get everyones feedback, is how are you able to deal with full-time career and these SE's ? My problem is that I'm not sure whether I should even work during Chemo, because my understanding is that the immune can be very low, and I have to take trains and taxi's in NYC, and I also have to conduct meetings in a room that usually has anywhere from 20 to 100 people in attendance.

I have a lot of family members that are telling me that I should continue on disability during the Chemo, so to prevent from getting even worse. Any feedback on this is greatly appreciated!

MOrtiz
I took my disability while going through chemo and im thankful i did. My job was very pysical and i was around sick and healthy patients for i worked in the medical field. It turned out chemo made me very sick...im one of the lucky ones that way! Yet you kind of have an idea of when your counts will be down...but lucky me if someone came around me during that time with the sniffles i got bronchitis, but not everyone is like that. I also refused to live in a bubble but i wasnt stupid about it either. But later i did find out that my counts were going lower than they should with the chemo. Again not everybody has these problems...some do better than others with chemo and hopefully you will be one of those people.
I would still take your familys advice...cuz chemo does take a toll on ya and youll need the rest!

cavediver

MOrtiz0810 said:

Thank you!
Thank you for bringing this topic up! It has been extremely useful to me, as I will be starting Chemo probably within the next few weeks.
My Oncologist explained to me the common SE's during my first consultation with him, but what I have read from the BC family is that there are a lot more SE's that might occur, so I'm glad that I'm preparing myself with this knowledge beforehand!

One of my major concerns, and maybe I should post this separately, to get everyones feedback, is how are you able to deal with full-time career and these SE's ? My problem is that I'm not sure whether I should even work during Chemo, because my understanding is that the immune can be very low, and I have to take trains and taxi's in NYC, and I also have to conduct meetings in a room that usually has anywhere from 20 to 100 people in attendance.

I have a lot of family members that are telling me that I should continue on disability during the Chemo, so to prevent from getting even worse. Any feedback on this is greatly appreciated!

disability available...go for it
As you have read here....the severity or SE's is different for all of us. My job Oct-March was travelling out of country leading extreme sport adventure tours (cave diving)...but my Chemo started when I returned mid March. However, I work at home during the summer and even find that hard to concentrate and be accurate (chemo brain has set in on occassion)...So, I for one would not be able to go out to an office and work each day.
My hat is off to those that are able to work during this time! My counts are always low, and even after the day after shot, I get another one on week #2...so I have not gone anywhere where there are crowds of people, other than food shopping.
Good luck with your Chemo.....remember, you may not have many side effects......it is so very different for all of us....just take good care of yourself, and let us know how you are doing. I started this thread so we would not be afraid of reactions we were not told about.,,the unknown is more frightening than anything.

fancy0416

cavediver said:

disability available...go for it
As you have read here....the severity or SE's is different for all of us. My job Oct-March was travelling out of country leading extreme sport adventure tours (cave diving)...but my Chemo started when I returned mid March. However, I work at home during the summer and even find that hard to concentrate and be accurate (chemo brain has set in on occassion)...So, I for one would not be able to go out to an office and work each day.
My hat is off to those that are able to work during this time! My counts are always low, and even after the day after shot, I get another one on week #2...so I have not gone anywhere where there are crowds of people, other than food shopping.
Good luck with your Chemo.....remember, you may not have many side effects......it is so very different for all of us....just take good care of yourself, and let us know how you are doing. I started this thread so we would not be afraid of reactions we were not told about.,,the unknown is more frightening than anything.

What a relief...of sorts
Reading about what I'm going through (had second A/C treatment last week) does actually make me feel less like a nut case and more like trooper. Thank you all. My vision has just started to blur regularly, most especially when working on the computer (huge part of my job). That and the feet that have just started to feel like I'm walking on glass. I went through the bowel issues after my first treatment and determined, after talking to others, that I would make every possible effort to drink more water, sought out the recommendations of a naturopath involved with the cancer center, and these efforts made treatment two go so much better.

Now I see I may have to get my glasses changed while in chemo. The blurriness is almost too much to be able to work, though I've always had bad eyes, so outside the computer, it doesnt' matter as much. I seem to compensate for that.

If I could only get my stomach/esophagus related discomfort (Reflux) managed, then the tiredness and chemo brain might be endurable. Any personal techniques for the stomach gnawing? And the soles of the feet hurting?

I'm glad I found this site and appreciate your input, as it seems difficult to get this info out of the onco. I hadn't tried the infusion nurses yet, that is a good lead, too.

Gabe N Abby Mom

I had a chemo class...and
I had a chemo class...and got great information, it was very thorough. But they tend to stick to the major side effects that most people experience. Anything outside of that I was instructed to call, and the chemo advice nurse has been great with information.

There is one thing I'll add...I do neupogen shots (7 consecutive days after chemo,I do it myself) instead of neulasta to get my blood counts back up. It causes the bone pain too. When I called about it they prescribed vicodin, which made me throw up. At my next treatment I asked the onc nurse, she knew that claritin helps with the neulasta bone pain. So she asked the onc pharmacist about the neulasta, and sure enough claratin is recommended by the manufacturer for neupogen bone pain as well. I've been taking it ever since and no more bone pain. (It doesn't help the runny nose and watery eyes though.)

I told the advice nurse and the onc about the claritin, and they are now suggesting it for other patients. So, add the pharmacist to your list of people to ask.

Heartburn is the other side effect I wasn't ready for. A daily pepcid now takes care of that.

I have two rounds of TAC left. So hopefully, nothing new shows up. But with the support of the onc staff and everyone here, it is doable. Not fun, but doable.

Linda

cavediver

Gabe N Abby Mom said:

I had a chemo class...and
I had a chemo class...and got great information, it was very thorough. But they tend to stick to the major side effects that most people experience. Anything outside of that I was instructed to call, and the chemo advice nurse has been great with information.

There is one thing I'll add...I do neupogen shots (7 consecutive days after chemo,I do it myself) instead of neulasta to get my blood counts back up. It causes the bone pain too. When I called about it they prescribed vicodin, which made me throw up. At my next treatment I asked the onc nurse, she knew that claritin helps with the neulasta bone pain. So she asked the onc pharmacist about the neulasta, and sure enough claratin is recommended by the manufacturer for neupogen bone pain as well. I've been taking it ever since and no more bone pain. (It doesn't help the runny nose and watery eyes though.)

I told the advice nurse and the onc about the claritin, and they are now suggesting it for other patients. So, add the pharmacist to your list of people to ask.

Heartburn is the other side effect I wasn't ready for. A daily pepcid now takes care of that.

I have two rounds of TAC left. So hopefully, nothing new shows up. But with the support of the onc staff and everyone here, it is doable. Not fun, but doable.

Linda

you are almost there!!!!
Two rounds of TAC to go and you will be out of the tunnel....yeah!!!! I know it is a hard and difficult journey..... I finished my 8th TAC in September and I am so glad but remember the SE's ... You have endured so much and will be done with this phase soon....and the side effects do pass rather quickly after completion of cycles.......Hugs

Lighthouse_7

cavediver said:

you are almost there!!!!
Two rounds of TAC to go and you will be out of the tunnel....yeah!!!! I know it is a hard and difficult journey..... I finished my 8th TAC in September and I am so glad but remember the SE's ... You have endured so much and will be done with this phase soon....and the side effects do pass rather quickly after completion of cycles.......Hugs

I would have loved to know
I would have loved to know about the scalp hurting. I thought I was going crazy.
I chose to shave it myself and found that it immediately felt better.

mellk

I wasn't told
As soon as I was diagnosed I got on the ACS and National Cancer Institute websites and ordered every booklet they had. One that I got from NCI was called Chemotheray and You and that booklet was pretty good and covered just about all the side-effects but if I didn't have that booklet I would have been freaked because I was not told about a lot of
the side effects from my medical team.

My oncologist mentioned the fatigue, nausea, that I would become infertile and hair loss.
The nurses told me about the super sensitivity to smells.

What I was not told about:
-watery eyes / waking up to eyes crusted shut
-what I now know is "chemo-brain"
-mouth sores and bleeding
-dry skin that is terribly itchy
-how bad my scalp would hurt (even after I shaved my head)
-how nothing tastes the same
-not being able to make it the restroom in time (on ocassion)
-Diarrhea AND Constipation (either one or the other the whole time)

My oncologist also talked like you bounce right back once the chemo is over but I had chemo before my surgery so I have had about 6 weeks off before I go back for the post-op chemo and I still have chemo brain, super dry skin, over sensitivity to smells, and my eyebrows are just now falling out.

iowasignterp

CypressCynthia said:

This sounds stupid and
This sounds stupid and trivial compared to many of the side effects, but, when I was first diagnosed I was 33, and no one ever mentioned that tamoxifen would obliterate my libido. That was very hard on me and my husband--especially being that young. But we survived it, and 23 years later, are still going strong.

sexual side effects
I was premenstrual at the time and did not realize how very painful and dry my vaginal area would become. Sex became painful but the doctors pooh poohed it and said try new mositurizers. NOthing really worked for us at that time. Didn't pursue it too much but wished other people had warned me about that side effect. Managed to do a few other things but that was tough on my husband. It seemed unfair to him since he was such a huge supporter in my breast cancer battle.

cookie97

mellk said:

I wasn't told
As soon as I was diagnosed I got on the ACS and National Cancer Institute websites and ordered every booklet they had. One that I got from NCI was called Chemotheray and You and that booklet was pretty good and covered just about all the side-effects but if I didn't have that booklet I would have been freaked because I was not told about a lot of
the side effects from my medical team.

My oncologist mentioned the fatigue, nausea, that I would become infertile and hair loss.
The nurses told me about the super sensitivity to smells.

What I was not told about:
-watery eyes / waking up to eyes crusted shut
-what I now know is "chemo-brain"
-mouth sores and bleeding
-dry skin that is terribly itchy
-how bad my scalp would hurt (even after I shaved my head)
-how nothing tastes the same
-not being able to make it the restroom in time (on ocassion)
-Diarrhea AND Constipation (either one or the other the whole time)

My oncologist also talked like you bounce right back once the chemo is over but I had chemo before my surgery so I have had about 6 weeks off before I go back for the post-op chemo and I still have chemo brain, super dry skin, over sensitivity to smells, and my eyebrows are just now falling out.

I learned
I learned from Cavediver about the blurry vision, I didn't know about scalp pain till i read it here, and never knew until it was too late that you can put an ice pack on your fingernails during chemo to keep them from falling off. Oh yeah and the "will you make it to the outhouse syndrome?" didn't know about that either. One more round of Taxotere and Cytoxan and I should be on dry land for awhile.
Hope all this info will be helpful to the unfortunate new members of this club.

Peace and Love ,
Edie

cookie97

cookie97 said:

I learned
I learned from Cavediver about the blurry vision, I didn't know about scalp pain till i read it here, and never knew until it was too late that you can put an ice pack on your fingernails during chemo to keep them from falling off. Oh yeah and the "will you make it to the outhouse syndrome?" didn't know about that either. One more round of Taxotere and Cytoxan and I should be on dry land for awhile.
Hope all this info will be helpful to the unfortunate new members of this club.

Peace and Love ,
Edie

Oh I forgot
Oh yeah and I forgot about not having any nose hair! That has been really weird. Learned about that here too.

fancy0416

cookie97 said:

I learned
I learned from Cavediver about the blurry vision, I didn't know about scalp pain till i read it here, and never knew until it was too late that you can put an ice pack on your fingernails during chemo to keep them from falling off. Oh yeah and the "will you make it to the outhouse syndrome?" didn't know about that either. One more round of Taxotere and Cytoxan and I should be on dry land for awhile.
Hope all this info will be helpful to the unfortunate new members of this club.

Peace and Love ,
Edie

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:)

TP123

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:)

blurred vision
My onc told me that I should wait to get my eyes checked until after chemo because he has had some pts. tell him that Taxol actually IMPROVED their vision. So blurred vision could actually be caused from improvement. (I won't know for at least another month, I finish chemo at the end of November.) I had the wierdest side effects from A & C: I didn't get bad mouth sores, I got horrible perineal area sores. It was so bad, the NP that subbed for my gyne about passed out when she looked. I had calloused blisters, bleeding, a fissure, extreme pain releasing any waste (#1 or 2!). I had to use lidocaine jelly just to pee or poo. This was not in their side effect book either! When I was done with A & C chemo (after a month off to heal before finishing) the infection disappeared. Also, my hair is growing back in while taking Taxol. Oh, and I get nosebleeds daily with Taxol, even though they don't think it's the Taxol. But if you can get bleeding gums, why not nosebleeds. Both are mucus membranes.

JuJu54

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!

Curlz

A few others
I only figured out in the last couple of weeks that the crazy foot cramps are likely being caused by Tamoxifen, not because I finally put my sandals away and started wearing closed shoes (UGH)... I suspect my general hand/body aches are also tied to this, but will ask my onc at the end of the month when I see him.

The other thing I can honestly say I didn't expect was depression during radiation. The act of going every day for the almost the entire summer AND losing my regular (off-the-charts-compared-to-most-people) energy really got me down. I knew it was temporary, but it was still really hard, and I'm only finally shaking it in the last month or so. Tied to that: loss of appetite, which was also depressing for someone who loves to cook/eat/talk food the way I do. Again, it was all temporary and I knew why it was happening, but I felt like it came out of nowhere. When I asked my radiation onc when I was going to feel like me again, he said "Hey--you're being assaulted here every day, even if we're not hurting you--of course you feel it." I thought that was a truly kind way of telling me that it was normal and fine, and one of my techs told me I'd start feeling better about 3 weeks after I was done--and she was right on target with that!

Still coming to terms with the 'new' version of me post-treatment, but I know that part is very normal.