what side effects were you NOT told about...
Comments
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My experience
I have to suggest that doctors often don't tell us or minimize the risks that occur because often the chances of getting such things is so very low in 1% CHANCE. I started having side effects immediately and were ignored because their main goal is to get the treatments done, aren't interested in side effects because they know them though we often don't know what is happening to us. We don't know the symptoms of such things and often the pain associated with some of them. Treatment phase is most important to them to get us through knowing all that can happen and also they don't want to scare us either. My advice is read the paper work on the drugs given and you can learn so very much.
Tara0 -
paperwork read, but does not include all24242 said:My experience
I have to suggest that doctors often don't tell us or minimize the risks that occur because often the chances of getting such things is so very low in 1% CHANCE. I started having side effects immediately and were ignored because their main goal is to get the treatments done, aren't interested in side effects because they know them though we often don't know what is happening to us. We don't know the symptoms of such things and often the pain associated with some of them. Treatment phase is most important to them to get us through knowing all that can happen and also they don't want to scare us either. My advice is read the paper work on the drugs given and you can learn so very much.
Tara
no mention in any of the paperwork about blurred vision... I can assure this that is extremely scarey when you think you are losing your sight rather than just a side effect due to bone dry eyes from chemo. Agree treatment is important, but being scared does not make us strong or help us fight for our lives during treatment0 -
some samelaurissa said:Hi
My skin was so dry like crepe paper, eyes watered, nose dripped like a faucet from no nose hairs, became lactose intolerant, became incontinant and couldn't make it to the bathroom.
thanks.... my skin also became very thin...cuts easy on legs...and nose dripped..but I was thinking I was getting sick at first,,,did not realize just one more possible side effect! Had a few runs to bano just in time also............. I really think it helps us to all know of possible side effects we may encounter so we are less afraid when they occur...regardless of percentage0 -
Side effects? What's That????? LOL
Side effects? According to my Dr, SE's were just about non-existant, and if/when I mentioned anything, I was summarily dismissed as a whiner. And I had some doozies!
Seriously, though I knew I would loose my hair, I would have appreciated knowing that my head would probably ache, and that signaled the time to shave my head! My Dr never told me that losing hair meant that ANYWHERE I had hair I would lose it...I was so shocked to lose my brows/lashes, not to mention pubic hair. OMG!
My eyes watered, as did my nose, and my vision was affected adversely. If I tried to "feminise" myself, eye-make up ran down my face and I looked like a very sad rac.c.oon!
Neulasta shots...within 36 hours, all 206 bones in my body ached so severely that I needed assistance to even get out of bed. Again, my Dr said that "most people" have mild pain, and he offered no remedy for the 5 days of severe pain I experienced.
Peripheral neuropathy, especially in my feet and ankles was a problem, as well.
I won't even go into the early Alzheimers known as Chemo-Brain!LOL The only good that came from that was being able to say, as I live on an Indian Reservation with a Tribal Elder, is that I suffered from Kemo-Sabe Brain! I did, afterall, have a "Faithful Indian Companion", and I still do! :-)
So, aside from that...I looked gorgeous, felt marvelous, and carried on as if nothing bad was happening to me or my perfect body! Sheesh! I think I need to add delusional to that list, huh? LOL LOL
Hugs,
Chen♥0 -
My Experience
Although I didn't have a "team" like many of the sisters, my onc did have one of the nurses provide training prior to starting chemo about the side effects and they gave me pretty extensive literature about the potentail side effects of each drug. The nurses were always great about reiterating "if you're not sure, call me" and the onc goes over each new finding at each office visit. I have been fortunate so far and haven't had anything bad enough that I would want to slow down or interfere with the chemo and the docs were pretty honest that "unless something is really bad, we're going to ask you to power through..." We are at least all on the same page.
After the first round of CT, I had several bouts with the big "D" and had to get fluids twice. I haven't really gotten nauseated but have had some bloating, loss of appetite, etc. I get very tired and mentally foggy for a couple of days, particularly after the Neulasta. I get headaches while I am on the prednisone. The last two rounds, I have had the watery eyes which for some reason seems to get worse in the evenings. I do get neuropathies in the arms and legs and just fatigue in my extremities. Most of this comes and goes but I have noticed that the side effects tend to last longer as I go through more cycles. I do think that getting on my stationary bicyle helps with the neuropathy and the weakness but as work has gotten busier, I haven't done it as much - by 5:00, I'm ready to relax.
In all, it hasn't been nearly as bad as I thought it would be and since my side effects tend to come and go over the three week cycle, there hasn't been anything that I would want to interfere with just getting this done....0 -
They underestimated it all!chenheart said:Side effects? What's That????? LOL
Side effects? According to my Dr, SE's were just about non-existant, and if/when I mentioned anything, I was summarily dismissed as a whiner. And I had some doozies!
Seriously, though I knew I would loose my hair, I would have appreciated knowing that my head would probably ache, and that signaled the time to shave my head! My Dr never told me that losing hair meant that ANYWHERE I had hair I would lose it...I was so shocked to lose my brows/lashes, not to mention pubic hair. OMG!
My eyes watered, as did my nose, and my vision was affected adversely. If I tried to "feminise" myself, eye-make up ran down my face and I looked like a very sad rac.c.oon!
Neulasta shots...within 36 hours, all 206 bones in my body ached so severely that I needed assistance to even get out of bed. Again, my Dr said that "most people" have mild pain, and he offered no remedy for the 5 days of severe pain I experienced.
Peripheral neuropathy, especially in my feet and ankles was a problem, as well.
I won't even go into the early Alzheimers known as Chemo-Brain!LOL The only good that came from that was being able to say, as I live on an Indian Reservation with a Tribal Elder, is that I suffered from Kemo-Sabe Brain! I did, afterall, have a "Faithful Indian Companion", and I still do! :-)
So, aside from that...I looked gorgeous, felt marvelous, and carried on as if nothing bad was happening to me or my perfect body! Sheesh! I think I need to add delusional to that list, huh? LOL LOL
Hugs,
Chen♥
They gave me a huge notebook of information about nearly every conceivable side effect which was completely overwhelming! My problem with it was that even with all that information, my oncologist minimized all of it. She kept saying "most" people just fly through chemo with no problems. She made it sound like it would be nothing and I wouldn't really notice.
Really!?? After Taxol she told me that the peripheral neuropathy I might get would be just a little tingling in my hands and feet. So when I couldn't feel my right foot and the ends of my fingers that must have been her idea of "a little tingling." And they never mentioned it would get worse!
They also tended to overestimate how fast the side effects went away. Your sense of taste and smell will be back to normal in a week or two. Hummm? Eight months later and my sense of smell is still messed up and I still can't taste everything.
When I asked her about some of this stuff at my follow up appoitnment in March I was also treated like a wimp that had strayed from the regular patient handbook.
My advice to the people just starting chemo is to ask your Oncologist's nurse or staff and especially the infusion/oncology nurses. They knew everything and gave me better side effect advice than my doctor ever did. They actually had advice about what to do about some of it too!0 -
acking head pre-hair losschenheart said:Side effects? What's That????? LOL
Side effects? According to my Dr, SE's were just about non-existant, and if/when I mentioned anything, I was summarily dismissed as a whiner. And I had some doozies!
Seriously, though I knew I would loose my hair, I would have appreciated knowing that my head would probably ache, and that signaled the time to shave my head! My Dr never told me that losing hair meant that ANYWHERE I had hair I would lose it...I was so shocked to lose my brows/lashes, not to mention pubic hair. OMG!
My eyes watered, as did my nose, and my vision was affected adversely. If I tried to "feminise" myself, eye-make up ran down my face and I looked like a very sad rac.c.oon!
Neulasta shots...within 36 hours, all 206 bones in my body ached so severely that I needed assistance to even get out of bed. Again, my Dr said that "most people" have mild pain, and he offered no remedy for the 5 days of severe pain I experienced.
Peripheral neuropathy, especially in my feet and ankles was a problem, as well.
I won't even go into the early Alzheimers known as Chemo-Brain!LOL The only good that came from that was being able to say, as I live on an Indian Reservation with a Tribal Elder, is that I suffered from Kemo-Sabe Brain! I did, afterall, have a "Faithful Indian Companion", and I still do! :-)
So, aside from that...I looked gorgeous, felt marvelous, and carried on as if nothing bad was happening to me or my perfect body! Sheesh! I think I need to add delusional to that list, huh? LOL LOL
Hugs,
Chen♥
wow....seems so long ago....but I remember the hurting head.....like just touching my hair felt like putting spikes into my scalp. I had never heard of that nor read it on a post prior to it happening to me, so I was surprised. Decided to shave the head and that was that! I just think it would have been nice to have known these things in advance.
Chen, your posts always are to the point, and make me feel better! Thanks0 -
The only thing I can think
The only thing I can think of that wasn't at least mentioned at my education and in the book they gave me, was going to sleep 2 hours (almost to the minute) after getting Neulasta. Would sleep a bit wake up and was fine. I'm still having problems with appetite (taste came back) - I still never get hungry or think about wanting to eat. (Last Taxol was Jan 28, 10 and last rads was March 4, 10) This is a real problem for Hubby as he lived through the last few years of my Mother's aneroexia (SP?) and he doesn't want that for me. (Her AN was long standing and back then (30 years ago), the Dr.s weren't too knowledgeable in treating/managing it.)
Forgot to add - I'm still running below 'normal' temps. Never above 98.0F - usually between 97.4 and 97.6F.0 -
i sooo agreecavediver said:acking head pre-hair loss
wow....seems so long ago....but I remember the hurting head.....like just touching my hair felt like putting spikes into my scalp. I had never heard of that nor read it on a post prior to it happening to me, so I was surprised. Decided to shave the head and that was that! I just think it would have been nice to have known these things in advance.
Chen, your posts always are to the point, and make me feel better! Thanks
the looks you get when you say your head hurts from the few straggler hairs is unbelievable! my doctor told me they would eventually fall out. i asked a friend to shave my head as close as she could and wow! what a difference!
it's the little things like this that make such a difference!0 -
Side effects are different
Side effects are different for each person. And I like Chen had some doozies. The doc didn't tell me I would feel like I had been beaten with a ballbat after the neulasta shot.0 -
Side Effects
Glad to hear about the runny nose...I asked the doctor about it yesterday before my third treatment..She looked at me like I was crazy....I never connected it to the chemo until it happened after each one..But it is awful my poor nose has been sore for 9 weeks...But praise God I have one treatment left...Also does the neuropathy go away after you are done with chemo?? Blessings to you all.0 -
some people do breezewaffle8 said:Side Effects
Glad to hear about the runny nose...I asked the doctor about it yesterday before my third treatment..She looked at me like I was crazy....I never connected it to the chemo until it happened after each one..But it is awful my poor nose has been sore for 9 weeks...But praise God I have one treatment left...Also does the neuropathy go away after you are done with chemo?? Blessings to you all.
some people do breeze through chemo.I did not, I had constipation from the zofran (which they did not tell me) then diahrea which they told me was not the chemo. amazingly it stopped after chemo was done. nothing seemed to regulate me, and trying to stool, made a rectal fissure the biggest my colon rectal surgeon had seen.( had surgery after chemo was done) and she is the chief. I was in so much pain. that I lost a ton of weight and although food taste is better, I dont eat as much and have the same appetite (which can be good) I did regain my taste for sweets. I also had alot of the same s/e as Chen.
I feel arthritic and the doc just shrugs. I am glad you said that because I have alot of anger over feeling not listened to. I did not follow the usual path and felt so alone until the social worker at the hospital helped me, and you guys. I felt like I was insulting them by not following the ususal path.
This all sounds negative, but nobody told me how proud I would be of myself for getting through something so difficult, or how assertive for myself I would become. Or how so many people would help me and how humbled I felt to have to accept it but came out feeling that maybe, perhaps I deserved it. I know now I deserve a piece of the pie, not the whole one, but that I am important too. so these are good side effects.0 -
my neuropathy has not gonecarkris said:some people do breeze
some people do breeze through chemo.I did not, I had constipation from the zofran (which they did not tell me) then diahrea which they told me was not the chemo. amazingly it stopped after chemo was done. nothing seemed to regulate me, and trying to stool, made a rectal fissure the biggest my colon rectal surgeon had seen.( had surgery after chemo was done) and she is the chief. I was in so much pain. that I lost a ton of weight and although food taste is better, I dont eat as much and have the same appetite (which can be good) I did regain my taste for sweets. I also had alot of the same s/e as Chen.
I feel arthritic and the doc just shrugs. I am glad you said that because I have alot of anger over feeling not listened to. I did not follow the usual path and felt so alone until the social worker at the hospital helped me, and you guys. I felt like I was insulting them by not following the ususal path.
This all sounds negative, but nobody told me how proud I would be of myself for getting through something so difficult, or how assertive for myself I would become. Or how so many people would help me and how humbled I felt to have to accept it but came out feeling that maybe, perhaps I deserved it. I know now I deserve a piece of the pie, not the whole one, but that I am important too. so these are good side effects.
my neuropathy has not gone away it is slowly lessening though.0 -
My eyes! My eyes!
I'm so glad you are talking about the eye issues. I thought it might be allergies, too much computer work, poor sleep. All that may make it worse, but now I know it definitely could be the chemo. Hope it gets better. I'm 3-weeks post-chemo and it's still disturbing.
The drippy nose alternates with the stuffy nose. Blah.
The side effect I really wish I'd understood was the compromised immune system. Yeah, they told me my blood counts were low. But, the groceries had to be bought, the prescriptions filled, etc. I caught the worst cold of my life. Won't go into the gross details, but when they say low blood counts, it's time to be a hermit and stay away from crowds as much as possible! (How do the school teachers do chemo and keep working?!)0 -
twitchy eye lidsChristine Louise said:My eyes! My eyes!
I'm so glad you are talking about the eye issues. I thought it might be allergies, too much computer work, poor sleep. All that may make it worse, but now I know it definitely could be the chemo. Hope it gets better. I'm 3-weeks post-chemo and it's still disturbing.
The drippy nose alternates with the stuffy nose. Blah.
The side effect I really wish I'd understood was the compromised immune system. Yeah, they told me my blood counts were low. But, the groceries had to be bought, the prescriptions filled, etc. I caught the worst cold of my life. Won't go into the gross details, but when they say low blood counts, it's time to be a hermit and stay away from crowds as much as possible! (How do the school teachers do chemo and keep working?!)
Several weeks after my last Chemo I was getting Herceptin and I was talking to another patient and I mentioned my eyelid was twitching a lot. She said the same thing was happening to her. My onocologist was in the room and said that is a chemo side affect. I just thought it was because I was tired. I also thought the chemo side effects would disappear sooner than they have. Foggy brain seems to have lasted longer than a lot of my other side effects. Several times I just mentioned something I was feeling that I did not think it was anything unusual and the dr said it was from chemo.
rm221110 -
induced menopausecarkris said:my neuropathy has not gone
my neuropathy has not gone away it is slowly lessening though.
and everything which associated with it: horrible hot flashes, insomnia, fatigue, 0 tolerance to even minimal stress.
Vision - started to wear glasses after finished 6 cycles, then changed prescription twice within 12 months0 -
side effects they don't tell you aboutrm22111 said:twitchy eye lids
Several weeks after my last Chemo I was getting Herceptin and I was talking to another patient and I mentioned my eyelid was twitching a lot. She said the same thing was happening to her. My onocologist was in the room and said that is a chemo side affect. I just thought it was because I was tired. I also thought the chemo side effects would disappear sooner than they have. Foggy brain seems to have lasted longer than a lot of my other side effects. Several times I just mentioned something I was feeling that I did not think it was anything unusual and the dr said it was from chemo.
rm22111
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.0 -
OMG
After reading all of your comments about side effects - I can't imagine what I will be like once treatment is started. I'm 61 and having bilateral mastectomies June 22. I was diagnosed with osteoarthritis 10 years ago and my joints are sore often. I have screws in both shoulders and my neck. I also have lumbar spinal stenosis. Last August I was diagnosed with Lyme disease for which I took antibiotics for 3 months. I had brain fog, achy body, dizziness, shooting pain in my legs along with numbness and tingling, and most of all floaters in my eyes. What all of you are describing seems so much worse even though I know everyone does not respond to meds the same way. It's a real eye opener and I will definitely be forewarned about the possible side effects. Thanks!!!
I just remembered, I also already have overactive bladder......0 -
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.0
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