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Chemo Side Effects - How Long Do They Last?

mgm42
Posts: 494
Joined: Nov 2007

I've heard about the metallic taste, nausea, vomitting, exhaustion, joint pain, and neuropathy. How long do these side effects last? Are you nauseated for the entire twelve weeks or for a few days after the infusion? Does the metallic taste last the entire time? Is this why people lose weight while on chemo? I know the PA will answer my questions tomorrow when I meet with her, but somehow, hearing the answers from people who've been through it, is always a bit more realistic. There are text book answers and real life answers. I tend to trust the real life answers. Any light you can shed will be greatly appreciatd. Marilynn

Skybuf's picture
Skybuf
Posts: 144
Joined: Mar 2007

Hi Marilynn, I've been thru what your going thru now, everyone is different and they will tell you that....as for me I didn't have any nausea at all, I followed the oncologists regimine....took my antenausea drugs (Zofran) and that eliminated that, I didn't really get a metallic taste either, but they have a mouth wash for it and drink lots of water and juices. I rinsed with salt water too. I never vomit either, had no need to really...now for the others, I did experience..like exhaustion, I felt like someone drilled holes in my feet and pulled ALL the energy from my body....but it does come back. Joint pain, yes but it could be from meds and lack of exercise since you have no energy. Neuropathy was my worst nightmare since I had to take Taxol and it affected my feet bad, BUT not everyone experiences that as many in radiation were able to walk and had NO pain....I am now recovering from that after 2 yrs...can walk much better now and even do some shopping....with rest periods. So Gods speed my friend, may your journey be a healthy one, remember that chemo is your friend, it will kill all those BAD cells for you, I thought of it as pac man in there, gobbling up all those ca cells and killing them, May the good Lord watch over you and give you peace and comfort you hon.....love and Hugs

Anonymous

I don't think anyone can answer your questions, because your experience will be unique. I will tell you a little about mine. No nausea what so ever - they gave me drugs for that. Gained a little wieght because eating was fun (and chemo isn't) and maybe the anti nausea steriods reved up my appetite. But, only a couple of pounds..don't get scared. The equation still holds - calories in, fat on. Eat healthy. I had the metalic taste bad the first infusion and felt like I had bad breath (so I took a toothbrush to work and snuck off to brush my teeth a lot). I also ate Skittles candy to freshen my mouth. I did get a temperature the first time I took a/c and the first time I took taxol. With the a/c (I will try to spell these out...adromyiacin and cytasin, cyt-something) I got the effects two days after infusion for about three days. It was like a flu. Some hours were like a bad flu. But I never had to take a day off from work even though I crashed on the weekends and stayed in bed sometimes. I did get constipated. I am doing taxol now and I thought I would breeze through but I have a lot of bone pain or muscle pain. I do take the neulasta shots that give bone pain. Here is the important part. I am able to get through this. The side effects come one by one and I dealt with each one. Seriously, the worse thing for me was the mood swings. I cried for no reason and I also cried because I wanted my life back. Which, if you think about it, is what chemo is trying to do for us. I will not tell you it has been easy, but it has been possible and the experience for me was not as bad as I imagined when I read down the list of side effects. I take my infusions every two weeks. The second of the two weeks I feel like normal (almost).

Now to get personal. If you are like me, then you are searching for an understanding of what you will go through so you can rally your forces and stay in control. Looking back, I must say that attack plan didn't work for me. I was forced to take it one day at a time. It has been a discovery journey for me. I have had to release the control I have battled my whole life to maintain. It is an old wisdom that we should live in the moment..but that is hard to do. Getting through chemo is (at times) suffering in the moment, healing in the moment, surviving in the moment. I hope and believe that when I am done I will have learned something so valuable - how to live in the moment, be happy in the moment, love now. Control over our lives can become a stranglehold. Next time, I would rather learn life lessons from a self help book while sipping coffee instead of through this BC experience. But, while looking down the list of side effects, even if the doc's don't write them in, there are others. Wisdom, self knowledge, inner strength, and, at times, incredible feelings of love. (like for fellow journeyers, like for you)

RE's picture
RE
Posts: 4606
Joined: Feb 2004

My experience with side effects were a follows: The metallic taste lasted the entire time I was on chemo, using plastic utensils helped a great deal. Neuropathy has been a problem and will continue to be a problem for me. I too had it in my feet, however that passed. I also have neuropathy in the hand and arm of the side with the cancer. Just a heads up that breast cancer patients can get lymphedema which can cause swelling and neuropathy in the arm on the side with the breast that had cancer. I ended up with it and as a result I wear a pressure sleeve. It's a very small price to pay to be able to say I survived! I didn't have any vomiting, the meds prevented that. I did have the nausea which for me was strong the first three days then slowly went away as the week went by. By the second week I was quite a bit better and on the third week I was doing fine. I also had the joint pain, a warm bath and rest helped me with this. I was quite tired while on chemo. As the weeks went by and the infusions continued I would become more tired. It took about three months after th chemo to get my energy back up to a decent level. Oh, and of course my hair fell out. I got a wig pretty quickly so I would be comfortable going out. I also wore a lot of hats and scarfs. Here is a website where if you can go fill in a request and they will send you several free hats according to your needs. www.heavenlyhats.com I always wore a night cap to bed to help keep me warm while sleeping. I gained a lot of weight the second time I was diagnosed because I was on chemo with steroids and radiation for a little more than 11 months. Once it was all over i was able to exercise and eat better which resulted in losing most of the weight. Your experience will be uniquely yours. Remember to be kind to yourself, rest when needed and let others do things for you. That part was really hard for me because I was used to being the one doing things for the family not the other way around. I wish the best for you and will keep you in my prayers!

Rena

seof
Posts: 826
Joined: Jun 2007

It is a very individual thing. I had a weekly infusion herceptin and Taxol for 24 weeks before surgery. Side effects were gradual, but complete hairloss (uderarm, pubic hair, eyelashes....all of it) and "chemo brain" (trouble focusing and remembering daily tasks/schedules) and my toenails became discolored and partially loosened from the beds. I had slight tingling in the toes and fingertips and started taking afternoon naps after work. No pain or nausea. since surgery I have had one of 4 infusions (once every 3 weeks) of adriamycin and Cytoxan. My hair is starting to fall out again, and I have to be careful what I eat (Mexican food gives me diarhea, some smells are unappetising) but I have had very little nausea and no pain. Side effects can be cumulative, so I may have more trouble after the other 3 treatments, but I seem to be able to tolerate chemo whithout as much trouble as some people have.

You will just have to learn as you go how it will affect you, but it might not be as bad as you think. The main thing to remember is that it is getting rid of the cancer, and it is temporary.

Best wishes, seof

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

Hey, Marilynn....just as the others said, everyone is different. I only had 2.5 days of trouble with my chemo....I was infused on a Wednesday, worked on Thursday (my hampster-in-a-wheel day...high from the steroids on Wed to stop nausea...lol), half day Friday...napped Friday afternoon and evening...Saturday (the 'day 3' blues) I relaxed and did nothing (this was the least kind of the days), Sunday I was back to 'normal' (altho, for ME to be normal...well, that's a whole OTHER book...lol!).

BUT, this was probably intensified cause 6 months earlier I had been thru Oxylaplatin and 5FU pump for rectal cancer....

Here's hoping you just sail through it all!!!! One secret I share with everyone: water, water, water....I drank 4 quarts (!) the day before, day of, and day after infusion....kept me hydrated AND flushed the chemo thru my system faster...long term effect? no tingles or numbness...

Hugs, Kathi

phoenixrising's picture
phoenixrising
Posts: 1509
Joined: Feb 2007

Hi Marilyn, I didn't have a metallic taste but food definitely tasted different. Mostly I found it to taste too salty. I craved foods that I normally don't eat. Junk food mostly and esp. ice cream. I was really bad!! I did have nausea but never vomited. The meds helped with that. I had 5-fu,epirubicin (which is a relative of adriamycin) and cyclophosphamide (cytoxin) cocktail 3x and taxotere (taxol) 3x.

What I found with the first three was a foul smell that seemed to come from my scalp. My husband couldn't smell it but it tormented me.
I was also very spacey and my balance was off. I took chemo through winter and at times needed a cane to avoid falling. My stool was a chalky colour at first and I had an achy pain in my left side under the ribs. They couldn't find anything though, but these strange effects had me worried. I was always much better the week before my next shot. Lots of exhaustion, I slept alot. Couldn't imagine working through it. I gained weight. I've never had a problem with my weight and even now I am carrying around a little extra, but I think that has to do with the tamoxifen and water retention.

The taxol did a number on me that I was not prepared for. Day 3 and my bones were literally on fire. If I had known this frequently happened I wouldn't have been so concerned, but according to the info I had it could be controlled with acetaminophen. Mine required morphine. My nail beds started to die but didn't and remained a normal colour. I also developed thrush in the mouth very bad from the taxol which I had no previously problems with. Again there are meds for that. I developed a mood disorder during the taxol. A very dark black mood that comes and goes.

It's been 9 mos since my last shot and I am finding strange things continue to happen. My vision is much worse. My feet are a little swollen in the morning...no one knows why. I go from not being able to sleep or waking during the night to sleeping day and night. Back and forth. My mood disorder is diminishing and I am grateful for that. I can still feel a buzz in my shins but it's not bad and I do have some neuropathy in my feet. I find stretching and exercise help. My energy level is not consistant. Good for awhile then not. Like my sleep.

Marilyn you may not get any of these effects or they might be very slight. It's good to go in optomistic but don't be afraid of calling your nurses if you are concerned about something, sometimes it is serious and should be looked after. My thoughts and prayers go with you Marilyn that it be an easy and successful journey.
jan

survivor51
Posts: 282
Joined: Jan 2008

Marilyn,
Yes all the side effects are hard but count your days. Remember that the side effects only last a certain number of days and then you have "good days". I learned to count my days so I would know the when I would have the good, the bad, and the ugly. It does get better. Not all people lose weight. I suggest getting life savers because that helped with the metallic taste. As to the other symptoms, talk to your oncologist because they have great drugs that can help with nausea, vomitting, exhausting, joint pain, etc. Drink plenty of water and stay away from caffine....unfortunately. More water, less carb. drinks...even diet onces. Yogurt helps with the metallic taste. All of this is definitely doable notice I didn't say free of discomfort and that is why I say...count your days. I found that I had treatment on Thursday..make sure to tell them to drip it slowly. It takes more time but no headache. On Friday, I'd go for the shot, and Sat. and Sun, just layed around. I could not read a book because I could not concentrate very well. Magazines were good and funny movies. I slept as much as I could and took the meds. I did not wait to get sick and took them for 3 days. The nausea one makes you sleepy...I just finished chemo and to be honest, it is all in the past. It is doable and we are all here for you. Angela

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