Odd Side Effects Survey
Hope you are all doing well today. I was interested in starting a list of odd side effects that your oncologist is seemingly unable to explain. I know that over the year and a half that I have been going through the treatment process that I have brought a myriad of questions about the way I feel, aches and pains etc... that the oncologist can't easily explain or attribute to either surgery or chemo. I know all about the standard issues like fatigue, hand & foot numbness, nausea and so on but I don't know about you, but as I said a I seem to experience a wide range of weird symptoms. For me I have had stuff, like breathing problems during chemo, incredible muscle aches (in the back) abdominal discomfort, unusual amount of gas and so on. Fortunately most of these things are subsiding but every once in a while another one pops up. The thing is when I talk to the oncologist about this, he says the it is not due to recurrence or anything else related to treatment or the colon cancer. All I know is that I did not have these symptoms before my treatment. So I put it out to you: What is your most troublesome symptom, that no one seems to have an answer for. Thought it might be interesting.
Cheers, Lance
Comments
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Lance, this one should be an interesting thread! There are SO many side effects we get the (dis)pleasure to experience during and after chemo. My fave that hasn't been explained yet is what I call the chemical bubble. It arrives pretty much 6 days after initial treatment (not counting the 48 hour pump). I feel like i am encased in a suit of bubble wrap, just inside my skin, from toes to head. My brain pretty much shuts down and i am very hungry, but can't actually get food for myself, nor would i be able to eat anything brought to me. Once it sets in, I pretty much have no choice but to lay in bed (if i have had the presence of mind to make it to the bed instead of staying on the couch) for 3 or 4 hours. If it's early in the day, i usually sleep through it. But i have had it set in later in the day and i don't sleep ... i just lay and think! I seem to have weird food cravings, with the emphasis on weird! But as I said, i wouldn't actually be able to eat anything. I don't seem to have enough energy to do anything more than roll about from time to time. I am able to watch tv and change the channel with the remote assuming it's within reach. As the chemical bubble begins to wear off, my thinking clears and slowly I regain energy to do normal things. Then, it just disappears as fast as it came, and I get up, get something to eat and can pretty much go on about my day. In fact, I am usually pretty energized afterwards; if i sleep through it i feel like i have gotten a full night's sleep; if i didn't sleep through it, i just feel very clear headed and not tired at all. Weird. I'm thinking that since it happens EVERY treatment, i must not be the first one to experience it, so i asked both my onc nurse and my onc... neither had heard of it before. Of course, I tend to describe things a bit differently than the average folk so maybe this is a common side effect just known by something other than chemical bubble? Any one else out there? My chemo conconction was CPT-11, 5FU, Leucovorin and Avastin. I am now just on Avastin so none of that now, thank God! Also, I took the Emend-Decadron combo to control vomiting.0
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Hi Lance,
My fingernails grew.
Like MScolon above, I had weird food gravings.
When I brushed my teeth, my mouth stayed in that "smile" position for a few seconds as well as when I was using the computer and took my hand off of the mouse, my hand stayed "cupped" for a few seconds (that was probably the muscle spasms).
Will be interesting to read others.
Claudia0 -
For my father it's been a cough.
Seems to be allergy AND related to emotions in that he REALLY coughs when he get's emotionaly distressed (I think it changes his breathing somehow)0 -
Hi I am on my last treatment of 5fu (I've had 12 treatments)
My weird symptoms are bad gum bleeding when I brush my teeth, nose bleeds, medal tasting in my mouth,and I look like I'm 5 months pregnant!!!
I can't complain but these are my symptoms!
Oh and also while I have chemo my left leg shakes constantly even a few days after treatment!
I'm glad you wrote about this, it's interesting to see how everyone is doing!
God Bless
Karyn0 -
I have had gums bleeding,nose bleeds, metal taste in mouth,muscle spasm in hands and face,sharp shooting pains in feet,legs, arms, hands,sore spots on scalp with no lesions,the worst is I have gained alot of weight 30lbs or so.butterfly23 said:Hi I am on my last treatment of 5fu (I've had 12 treatments)
My weird symptoms are bad gum bleeding when I brush my teeth, nose bleeds, medal tasting in my mouth,and I look like I'm 5 months pregnant!!!
I can't complain but these are my symptoms!
Oh and also while I have chemo my left leg shakes constantly even a few days after treatment!
I'm glad you wrote about this, it's interesting to see how everyone is doing!
God Bless
Karyn0 -
Hi, Valerie here. What a wonderful post. I have been complaining to my onc. about the whites of my eyes being "red" all the time. So I'm finding myself wondering if people are viewing me as some drunk. Plus, I have all of the above mentioned side effects.0
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I put on 20 lbs the 1st 12 treatments following my second surgery and another 20 the second round of treatments. Currently trying to get at least SOME of it off! Funny, you either lose a lot of weight cause you can't eat, or the steroids and the metabolism change cause you to gain weight... bummer! I had put on 20 lbs the first round of chemo after my first surgery, but during the time the tumor was growing before my second surgery i lost the extra weight and some. It's a catch 22, i need to get this extra weight off, but i remember what caused my last weight loss...tlsart said:I have had gums bleeding,nose bleeds, metal taste in mouth,muscle spasm in hands and face,sharp shooting pains in feet,legs, arms, hands,sore spots on scalp with no lesions,the worst is I have gained alot of weight 30lbs or so.
Mary0 -
I finished my chemo regime (FLOFOX)in Nov 06, but the two side effects that cannot be explained for me are eye sight issues and teeth issues.msccolon said:Lance, this one should be an interesting thread! There are SO many side effects we get the (dis)pleasure to experience during and after chemo. My fave that hasn't been explained yet is what I call the chemical bubble. It arrives pretty much 6 days after initial treatment (not counting the 48 hour pump). I feel like i am encased in a suit of bubble wrap, just inside my skin, from toes to head. My brain pretty much shuts down and i am very hungry, but can't actually get food for myself, nor would i be able to eat anything brought to me. Once it sets in, I pretty much have no choice but to lay in bed (if i have had the presence of mind to make it to the bed instead of staying on the couch) for 3 or 4 hours. If it's early in the day, i usually sleep through it. But i have had it set in later in the day and i don't sleep ... i just lay and think! I seem to have weird food cravings, with the emphasis on weird! But as I said, i wouldn't actually be able to eat anything. I don't seem to have enough energy to do anything more than roll about from time to time. I am able to watch tv and change the channel with the remote assuming it's within reach. As the chemical bubble begins to wear off, my thinking clears and slowly I regain energy to do normal things. Then, it just disappears as fast as it came, and I get up, get something to eat and can pretty much go on about my day. In fact, I am usually pretty energized afterwards; if i sleep through it i feel like i have gotten a full night's sleep; if i didn't sleep through it, i just feel very clear headed and not tired at all. Weird. I'm thinking that since it happens EVERY treatment, i must not be the first one to experience it, so i asked both my onc nurse and my onc... neither had heard of it before. Of course, I tend to describe things a bit differently than the average folk so maybe this is a common side effect just known by something other than chemical bubble? Any one else out there? My chemo conconction was CPT-11, 5FU, Leucovorin and Avastin. I am now just on Avastin so none of that now, thank God! Also, I took the Emend-Decadron combo to control vomiting.
I had the normal side effects while on chemo.0 -
Keep the stories coming gang. This is quite interesting. The bubble story from MSColon is very interesting. Almost otherworldly. Yes weight gain is a problem of mine as well, but since I finished chemo. I lost about 15 lbs. during it and wished I could have kept it off. I was so tired all the time, I figured eating more might perk me up. What can I say, I over compensated!! I have had muscle spasms also. My biggest beef at this moment is a hernia I got after the surgery. That was done via a laparoscope too. It kinda bulges out when I stand for a while. Looks like their is an alien implant in there? Alien implant, hmmmm...:-) Cheers, Lance0
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About four or five days out from chemo I can get painful spasms in my back. I wonder now if it is due to magnesium depletion from the chemo. My onc didn't know. Also, sometimes a weakness, not necessarily a fatigue, would make it difficult for me to lift my legs to walk. My legs would get to a point after which they just couldn't move without a lot of effort. Sometimes I would think I was lifting my foot enough to walk, but I would trip instead. Walking upstairs is a real challenge when I am like that.0
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I wonder if your problems with lifting your legs is related to my chemical bubble. Do you feel numb at all? But it's not really numb, which is why i refer to it as a chemical bubble, and for me, it's my entire body, including my brain!cjf2006 said:About four or five days out from chemo I can get painful spasms in my back. I wonder now if it is due to magnesium depletion from the chemo. My onc didn't know. Also, sometimes a weakness, not necessarily a fatigue, would make it difficult for me to lift my legs to walk. My legs would get to a point after which they just couldn't move without a lot of effort. Sometimes I would think I was lifting my foot enough to walk, but I would trip instead. Walking upstairs is a real challenge when I am like that.
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Oooh - good topic. When I was on FOLFOX, I got laryngitis each cycle, for a couple of days (oxaliplatin). My oncologist had never heard of this as a side effect, but several others on this board had!
The most puzzling to me was when I had radiation (for rectal cancer) and ended up with very sore muscles in my um bottom. Quite mystifying until I realized that I was unconsciously clenching my muscles during the radiation. ha ha.
Tara0 -
I still have numbness from neuropathy even up my legs to my knees, though it is not as bad as it used to be. Sometimes it's just a "fuzzy" feeling. Until recently (and I don't know what has changed) chemo would put me in a depression. Then,after I was more than a week away from it, it was like I was waking up with a clear mind. I really liken chemo to being poisoned, although I have never experienced any other kind of poison. There is just an overall sense that something is draining you of your life, and then it goes away. I wonder if it has something to do with being dehydrated and also of being depleted of minerals, which chemo does to us. No matter, it is simply a fact that chemo (and radiation) is down right nasty stuff.msccolon said:I wonder if your problems with lifting your legs is related to my chemical bubble. Do you feel numb at all? But it's not really numb, which is why i refer to it as a chemical bubble, and for me, it's my entire body, including my brain!
By the way , I also experienced "chemo brain". I had the slurred speech, confused speech (the wrong words would come out), and bad memory when I had oxaliplatin.0 -
Tara, I got laryngitis each cycle as well, but it was due to the decadron i was taking in combo with Emend to manage the nausea (which it did an excellent job of). I had to laugh about the sore muscles in your bottom and the realization of what was causing it!taraHK said:Oooh - good topic. When I was on FOLFOX, I got laryngitis each cycle, for a couple of days (oxaliplatin). My oncologist had never heard of this as a side effect, but several others on this board had!
The most puzzling to me was when I had radiation (for rectal cancer) and ended up with very sore muscles in my um bottom. Quite mystifying until I realized that I was unconsciously clenching my muscles during the radiation. ha ha.
Tara
Mary0 -
I used to have crying jags each cycle until they began giving me shots of Sandostatin for the extreme diarrhea. I started calling it magic juice! Not only did it give me better control of the diarrhea, but it counteracted the depression (I hate that word), and i wasn't nearly as tired on days 2 and 3. Unfortunately it's a once a month kind of injection so it worked great on the treatment i received it with, but not so good with the one 2 weeks later; but still better than nothing! I don't think it was necessarily dehydration cause i wouldn't actually start diarrhea until after the pump was removed on day 3, but it may have been whatever was rumbling about preparing for the diarrhea.cjf2006 said:I still have numbness from neuropathy even up my legs to my knees, though it is not as bad as it used to be. Sometimes it's just a "fuzzy" feeling. Until recently (and I don't know what has changed) chemo would put me in a depression. Then,after I was more than a week away from it, it was like I was waking up with a clear mind. I really liken chemo to being poisoned, although I have never experienced any other kind of poison. There is just an overall sense that something is draining you of your life, and then it goes away. I wonder if it has something to do with being dehydrated and also of being depleted of minerals, which chemo does to us. No matter, it is simply a fact that chemo (and radiation) is down right nasty stuff.
By the way , I also experienced "chemo brain". I had the slurred speech, confused speech (the wrong words would come out), and bad memory when I had oxaliplatin.
Mary0 -
Such a cornucopia of side effects. No wonder the oncologists have no real idea of how one person might be effected by their treatment. Everyone is different, but there does seem to be a common thread with a lot of people. Chemo brain I can relate too. It's bad enough having the age related version. I also find that as it gets closer to my 3 month checkups, I seem to start having a lot of different aches and pains, hopefully caused only by stress and anxiety. Keep your spirits up people and thanks for participating. Cheers, Lance0
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Could be causing dry eye. Try Systane or one of the other artificial tear products.vchildbeloved said:Hi, Valerie here. What a wonderful post. I have been complaining to my onc. about the whites of my eyes being "red" all the time. So I'm finding myself wondering if people are viewing me as some drunk. Plus, I have all of the above mentioned side effects.
Jo Ann0 -
Well, had chemo yesterday and these side effects "flashed back" to memory. I get severe tear duct pain if I cry the first 5 days, and my salivary glands kill me if I eat something tart or tangy. Heartburn like you can't believe - new meds for that tho. I get the same as the others neuopathy cold thing on hands and feet, sweating, tired, low energy. Thanks for bringing this survey to light.msccolon said:Lance, this one should be an interesting thread! There are SO many side effects we get the (dis)pleasure to experience during and after chemo. My fave that hasn't been explained yet is what I call the chemical bubble. It arrives pretty much 6 days after initial treatment (not counting the 48 hour pump). I feel like i am encased in a suit of bubble wrap, just inside my skin, from toes to head. My brain pretty much shuts down and i am very hungry, but can't actually get food for myself, nor would i be able to eat anything brought to me. Once it sets in, I pretty much have no choice but to lay in bed (if i have had the presence of mind to make it to the bed instead of staying on the couch) for 3 or 4 hours. If it's early in the day, i usually sleep through it. But i have had it set in later in the day and i don't sleep ... i just lay and think! I seem to have weird food cravings, with the emphasis on weird! But as I said, i wouldn't actually be able to eat anything. I don't seem to have enough energy to do anything more than roll about from time to time. I am able to watch tv and change the channel with the remote assuming it's within reach. As the chemical bubble begins to wear off, my thinking clears and slowly I regain energy to do normal things. Then, it just disappears as fast as it came, and I get up, get something to eat and can pretty much go on about my day. In fact, I am usually pretty energized afterwards; if i sleep through it i feel like i have gotten a full night's sleep; if i didn't sleep through it, i just feel very clear headed and not tired at all. Weird. I'm thinking that since it happens EVERY treatment, i must not be the first one to experience it, so i asked both my onc nurse and my onc... neither had heard of it before. Of course, I tend to describe things a bit differently than the average folk so maybe this is a common side effect just known by something other than chemical bubble? Any one else out there? My chemo conconction was CPT-11, 5FU, Leucovorin and Avastin. I am now just on Avastin so none of that now, thank God! Also, I took the Emend-Decadron combo to control vomiting.
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I am now 4 years out from chemo: 5FU and leuco only. It's amazing how this post takes me back. The "chemo bubble" feeling for me was very pronounced. I felt like I was "velcro'd" to my bed, admiring the dots on the ceiling for long periods. Gradually evolved into a serious potassium depletion, which I could self diagnose when my muscles felt too tired to move. I required IV potassium at times, then large doses of oral potassium. I also lost body hair, but the hair on my head just thinned. I had no eyelashes for a while, and my eyes felt constantly irritated. I developed a fungal infection in the cracks in the corner of my mouth, so painful that they bled often when I opened my mouth; my onc and the nurses missed that one, til a friend/dermatologist figured it out. Wierd food cravings accompanied by serious loss of appetite; at one point I felt like I was living on pumpkin pie filling and boiled shrimp! I also still get occasional very sharp twisting pains in my upper abdomen, that we think are possible adhesions from surgery.
Wishing you all a serious decrease in any and all side effects, Judy0 -
Other than the ones they
Other than the ones they normally list, weird things I have had on Folfox. Itching of my palms, then back of hands, then up the arms, inside the legs with no rash at all. Also, my vision is covered in a halo, like you get around your vision before a migraine, for the first day or 2 after steriods and Oxliplatin together, then I have trouble focusing for a couple of days. Just have to look at anything at a new distance for 3-5 seconds to focus in on it.
I think all the other crap is "normal". I am so glad to be halfway through.
Oh yea, I should have added. My loop illeostomy grew shut. Completely. No crap, really did. My surgeon has never seen it happen or heard of it before. I still have to have reversal surgery after chemo though. He said it will be more like a hernia type thing. That or he has no idea what to do with it since he's not seen it before.0
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