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Body and joint pains from taxol/carboplatin-did many experience these and how were these handled

hopeful girl 1
Posts: 454
Joined: May 2010

I get the taxol/carboplatin every three weeks. Had first chemo two weeks ago and a few days afterwards and pretty bad joint and body pains for several days. Still get but not as badly as the first several days. (Plus I still get all kinds of odd pains post surgery-alot of the same pains others have mentioned, rib cage, back, right side etc). I see on on some of the various postings that others experienced the taxol pains and were given steroids. Some stated had the first time but got better later. Can anyone who has had this post their experiences? It scares me that it could affect the heart muscle???

For those that had steroids were they given in a bag drip pre-chemo? Were the steroids pills to take afterwards? Were they given by doctor after letting them know about these symptoms after the first chemo?

When I called the cancer center and spoke to the nurse initially when I first experienced, I was told that you can take your pain pills or tylenol to help. But to be honest, it scares me taking much more, when they are pumping the chemo chemicals into our bodies and we have to process that. It worries me all we are giving are livers and kidneys to process. Am I over-worrying on that?

I would like to know how many experienced these pains, did they get worse each treatment, did they last longer, or same each time? What did you do for these?

Thank you so much.

Peace, and healing to all!

SI
Posts: 21
Joined: Jan 2010

I had horrible body pain with taxol. It seemed to get worse with each infusion, but that may have been psychological as I was soooo dreading those 4 or 5 days of intense shooting pain. Steroids and tylenol did not help and I did not want to take the pain medication due to problems already with constipation. After the third treatment the oncologist switched to Taxotere which really made a difference...actually had no pain with Taxotere. Taxotere had its own side effects, but for me the relief from the pain was definitely worth the switch. The oncologist said that Taxotere and Pacitaxol would provide equally effective treatment since they were very similar, but made by different manufacturers. If your pain is really severe, as was mine, you might wish to explore Taxotere with your doctor to see if that might work out better for you.
Best wishes!!

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Know what you mean about the pains. I had pain in my rib cage. Since I am a professional worrier, I had it all built up to be something dire. Asked the doctor who did the surgery. He said they had me spread open to make sure the debulking got all the cancer they could see. It takes a while for the body to heal and everything to go back into place after such an extensive surgery. Now 8 mos post surgery the pains are just twinges now and then.

Pain post chemo has lingered a little longer. My hands and feet feel like they are tingling. Happens mostly in the evening when I am tired. During the chemo I got the leg pains on the 4th and 5th day. It had a regular cycle to it. By the 8th day it would wear off. I think you are right to have concern about the pain meds. However, if they help you to move so you can get some exercise then go for it. Drink lots of water and keep hydrated to flush all these chemicals out of your system.

Hugs and may you have few problems. Norma

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I was on same protocol you are on now. I will say the pains were more extreme 1 week after chemo and subsided as time went on. You know chemo is cummulative too. The steriod was given in drip before the chemo drugs were administered. I found to have started to gain more fluids and more hungry from steriods (which is how they work).

With pains, I'd take tylenol or aleve...both work great! I'm into exercising, and found myself moving with lots of walking and think that might have forced much of the toxins thru my body faster. Think?

I know what you mean about what we're doing to our bodies. You can't tell me these drugs aren't potent and loaded with toxins, but what they're doing is killing cells...have to be potent! The alternative is worse (death), so I just took it in stride and resolved to the fact that this protocol must be done to rid myself of cancer.

Since my last treatment Sept '09, I'm trying to eat better, take my vitamins and keep my immune system very strong. Now this is another battle hoping to never hear my doc tell me about cancer recurrence.

Best of luck and keep plugging you're doing a great job!!
Jan

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I had terrible pains from taxol; it really is a reaction of a type. I took oral steroids the day before chemo, IV, and a small dose of dexamethasone (4 mg) daily for a week. My pain would realy hit 48 hours after chemo. I had to to take oxycodone. I followed the directions closely and came through safely; my kidney and liver function tests are fine. Some of us have a reaction to taxol; this can be mild and so severe that you cannot take it. Sometimes my face also swelled up. Once my knees hurt so bad I couldn't go up and down stairs. It lasted one week. The steroids and pain pills really helped; you have to do whatever it takes to get through this. We cannot control our bodies reactions to these drugs. One oncologist told me once your bodies reaction to chemo has nothing to do with efficacy. So if you get really sick it does not mean it is working better; if you don't get sick it doesn't mean it's not working.

I am sorry you have to go through this. Don't be afraid to ask your Doc for help. I kept a pain diary and wrote down my pain and medicine I took. This helped us to control it so I could get through chemo.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

hi sisters,

i still have pains, mainly around my rib cage after the radical hysterectomy nearly a year ago! also, some twinges, prickly feeling, and neuropathy in my toes, both feet, and fingers, both hands. the neuropathy is mild, but definitely there, though i do think the fingers are getting better. my chemo doc said that with this kind of surgery, it can take a couple of years to fully recover. she thinks some of the pains i'm now feeling are nerves recharging, plus scar tissue, etc. my acupuncturist definitely agrees with how long the pains can continue. i posted a month or so ago about roving pains--those that seem to come and go, and they still do. some around my rib cage stay. i don't think i had any problem with pain during chemo, and i'm sorry that's happening to any of you. i do still take some pain meds around every 6 hours or so, but keep cutting back. i imagine i'll be off them in another 6 months, at least that's the plan. i would definitely keep talking to the doctor until you feel you've got the pain under control.
sisterhood,
maggie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I had bone pain 4 or 5 days after each of my first 3 carbo/taxol infusions, and then never had that bone pain again for the final 3 infusions or for ANY of the 10 weekly taxol infusions I had for my recurrence. I didn't get ANY bone pain from the single Nuelasta shot I needed after my 6th carbo/taxol infusion; and never had any pain from the 30 Nuepogen shots I got once I started getting weekly taxol. So it shows how different we all are. I know for many people that Nuelasta causes HORRIBLE pain, but didn't give me any.

I never took any pain meds after my hysterectomy either, but I DID have incredible pain with that at first! (I remember that I was offered an epidural for the day AFTER my hyterectomy, but I turned that down since I thought it might make it hard to get up and walk.) But the Percocets they gave me at the hospital caused projectile vomiting. (Decades ago I was in a car accident and was put on a morphine drip at the hospital the 1st night that ALSO caused projectile vomiting, so I guess I just can't take narcotic pain killers.)

I had some tingling pain in my toes during my carbo/taxol days that has since gone away; and I had a dull ache in my torso for some time after chemo/radiation that I was told was very common as your digestive system has many fast-growing cells that chemo plays havoc with.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'll just 'edit' away my duplicate post & wish everyone Good Bye as I leave early tomorrow morning for my cruise and won't be back online until June 6th! BE WELL while I am gone!

I have a June 8th appointment for a sonogram-guided needle biopsy of that lymph node in my arm pit that lit up so brightly on my last CT/PET. They called today for my fax number so I could sign and fax back a Medical Records release and have my last 3 mammograms sent to them.

But I'm not going to give any of this another thought until I get back! BYE-EEEEEEE!

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Don't think about cancer....enjoy your wonderful cruise!

We'll look forward to hearing all the stories when you return.

Enjoy...
Jan

RGW
Posts: 59
Joined: Mar 2010

I also had post Taxol/Carboplatin pain & mentioned it to my rheumatologist. She wanted to try me on Lyrica, a medication used for diabetic neuropathy and fibromyalgia. I decided not to because my pain wasn't intolerable, but you might want to ask your oncologist. Another reason to not take a lot of Tylenol is that it can mask fever, especially if you are neutropenic.

Always Hopeful
Posts: 234
Joined: May 2010

H)i,
I'm on a slightly different regimin...6 cycles over 18 weeks: taxol every week, carbo every third week. Wednesday was just taxol (Cycle 2 week 2). Thankfully, I have not experienced any joint pain to this date. Don't know if the cumulative effect will catch up to me. Overall, except for one day of total and complete exhaustion and terrible heartburn after the combo of Carbo and Taxol, I have been pretty symptom free.

It does "pain" me to hear how much pain and discomfort others are in though.

Peace and Hope,

JJ

Derek_Beaucage's picture
Derek_Beaucage
Posts: 2
Joined: Mar 2012

This is a test, want to see how this works before posting my first response. Thanks.

Derek_Beaucage's picture
Derek_Beaucage
Posts: 2
Joined: Mar 2012

I know your post is old, but I wanted to post a reply for anyone about to get Carboplatin looking for information. Everyone reacts differently to chemo, but this has been my experience. I was diagnosed w/ testicular cancer stage I seminoma. I had surgery (orchiectomy) and have received 1 round of Carboplatin. Pain isn't one of the more common side-effects of Carboplatin, or so I believe, and my doctor never even told me it was a possibility. I received 7 AUC's of the stuff.

Before the nurse began my Carboplatin drip, she first gave me steroids and anti-nausea medicine via my IV. I was not sent home w/ steroids, that was the only time they gave it to me. Also, after the Carboplatin drip was finished, they flushed regular saline solution through my IV which I was told was to help clean out my veins. (You don't want chemo just sitting in there). So ask that your nurse do this! 1 to 1.5 hours after I was finished chemo, at home, I started feeling a weird, painful sensation all over my body. It got increasingly worse. The pain was deep in my bones, from the middle of my back down to lower back and hips, and above my knees and all the way down to my feet. Nothing in arms or neck. It felt almost like growing pains, but much more intense, coupled w/ a type of "restless-leg" sensation, which I believe is a nerve thing, so maybe chemo also affects the nerves as well as bones? Thank God my mother takes Vicodin, and she gave me one that first night, other wise I know I never would have slept and would have gone crazy! So with that said, if when you go home after treatment and begin feeling similar pain, don't hesitate and call your doctor right away! Even if the pain isn't unbearable at that point, you don't want to let it get that bad! Plus if it's too late and the pharmacy is closed you'll have to spend the night suffering. You might even want to ask if they will call you in some pain medicine so you can have it on hand in case this happens.

I think all of the posts I've read about people having pain from chemo have said that the pain begins a few days after, mine started the day of treatment. It was quite intense for a few days, maybe even 4 or 5, but even now, 10 days later I'm still having pains and still taking Vicodin which my doctor has been prescribing to me. The type of pain I've been experiencing has shifted a bit. The "growing-pains" and deep-bone aches all over my body has kind of changed to where I now experience sharper, more "stabbing" like pains in my neck, shoulders, elbows, mid-back, lower back, and knees, and I still wake up feeling very sore and stiff, and still experience the weird nerve "restless-leg" type of sensation, which I have not only in legs but really all over my body.

I've heard chemo is cumulative, and that each treatment your symptoms can be worse each time. Hope this info helps someone out, and don't hesitate to email me with any questions! Cheers

Mdotsie47
Posts: 28
Joined: Dec 2011

I had my first treatment March 6 -3 days ago. I was given lots of steroids the day before and during the treatment. I did not feel bad at all the day of the treatment or the day after, but the third and fourth days are incredibly painful. My whole body hurts intensely and none of my pain killers are helping. The norco has constipated me so now I have that too. This is not fun. It's like being poisoned, which I guess is what's happening. I was at the end of my rope as far as other treatments that had not worked to shrink my uterine metastasis lung tumor, so I will stick with this. I' m keeping a journal to see if the symptom pattern stays the same.
Has anyone else with this pain found relief?

JoAnnDK
Posts: 276
Joined: Jun 2011

My joint and muscle pain has become much more pronounced in the last three months, a year after finishing chemo and radiation. I saw my primary care doc yesterday and she warned me about how hard Advil is on our livers. Just what we need, right?

She gave me a script for Tramadol. Has anyone taken it? It has a zillion awful side effects. Grrr

JoAnn

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

My dogs both have prescriptions and I've been tempted to raid their stash.

Liz in Dallas, where desperate times call for desperate measures

Mdotsie47
Posts: 28
Joined: Dec 2011

I am in a cancer support group at the medical center where I am being treated. People talk a little about their chemo reactions, but not much. The woman who usually sits next to me told me she went through nine rounds of chemo and never missed a day of work.

My experience is different and I feel a little like a wimp for giving in to it.

The first two days weren't bad but the next three were awful. The body pan and headache were unrelenting.

Today I am weak and dizzy but determined to get out and walk. I can't let myself turn into a vegetable.

I drnk a lot of water but my urine is brown, so I guess I should be drinking more?

The steroids have not increased my appetite, so weight so far is not a problem.

I would like to hear from more taxol body pain sufferers about how you are coping. Do you force yourself out of bed even when you're curled up in agony? I have really limited my pain pill intake because of constipation and liver/kidney damage, but it doesn't seem to help that much anyway. Soaking in a warm bath helps more than anything.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I have been taking tramadol the last week, due to pain in my lower back.
I finished chemo last July. Right after, I developed joint pain every here, and the lower back pain is new.

I am having an MRI next week, just to make sure there is nothing else.

Tresia23's picture
Tresia23
Posts: 73
Joined: Dec 2010

You are right JoAnn. Tramadol has some very unpleasant side effects. I have not taken it but have administered it to patients. Not everyone experiences the side effects but those who do usually stop taking it immediately. Take a look at some of the chronic pain websites or even fibromyalgia sites. They have lots of good suggestions for pain managment. Georgia

therevslittlegirl's picture
therevslittlegirl
Posts: 29
Joined: Mar 2009

It probably won't work as well as the Vicodin but when I was going through this I used Benadryl. It does seem to help ease a few of the "restless" leg side effects. I'm almost 3 years out and even now I still experience some of the pain I did after going through chemo and radiation.

How are you feeling after your first round of chemo? Yes, sometimes one chemo treatment can be worse than others and it differs from person to person.

jeanne23
Posts: 1
Joined: Mar 2012

I started taxol/carboplatin treatments in January, for recurrent endometrial ca. The first treatment was the worse for me:the day after the chemo was fine, then it hit, bone pain, muscle aches, restless legs and exhaustion for three days. Then it left just as fast as it came in and I was fine. The next two treatments were more tolerable, probably because I knew what to expect. I don't fight it when the symptoms hit, I do take norco and go to bed. Don't fight it!I am given a pre chemo steroid IV, followed by nausea meds, benadryl and then they start the chemo. It seems to be a workable combination for me. You really need to drink alot of fluids, rest. It does differ from person to person

Mdotsie47
Posts: 28
Joined: Dec 2011

I am getting exactly the same regimen as you. I had no problem the day of the infusion. The leg pains were worst the 3rd to 6th days. I am still in some pain, mostly at night, so I take a norco then.

I have had the problem of my knees folding under me suddenly, so I have started walking on the treadmill instead of outside. Sometimes the pain is bad enough that I just give up and go to bed, but I have a fear of getting weak. My mother died of a pulmonary embolism brought on by staying in bed from weakness so I guess that put this fear into me.

I think you are smart to say "don't fight it", I am trying to find a balance.

I would like to know what any of you has been told about the nadir for carbo/taxol. My chemo nurse said it starts around the seventh day and usually is worst from the tenth to fourteenth day. She told me not to eat out, not to eat raw or undercooked food, not to expose myself to people with infectious illness, to stay home and take it easy if the low blood counts are making me tired. Does this advice sound like what you have been told?

Karenhopeful
Posts: 38
Joined: Jan 2012

Your last paragraph sounds lilke my cancer information book. Personally, I'm not forcing myself to do anything. If I want to sleep I do.Though I get up and come downstairs every day. Up until last week, my back would really hurt and I'd be short of breath if doing anything. My back pains have eased up since my second chemo. No other problems after the second chemo. I'm trying not to worry about things that may happen, but I do worry that my blood counts will go too low soon and I'll need to get Nupigen shots. My main reason for "worrying" is that we are going to try to plan a couple week vacation between treatments. But who knows if I'll feel this good after the 3rd chemo treatment. I hate the thought of being far from home and developing a problem and my insurance will not cover me while away.

Tresia23's picture
Tresia23
Posts: 73
Joined: Dec 2010

Hi Derek,
I have been reading all these posts and cannot help thinking that it would be useful to share some resources in dealing with chronic pain which is what the post chemo experience seems to be. I have had fibromyalgia for a long time and have been down the road of pain meds, yoga, tai chi, acupuncture and the rest. There are some things I do know which I think are helpful in reducing pain intensity. I take fish oil, magnesium and try to have a low protein alkaline diet. I exercise even when it hurts. I say to myself 'that hurts' but I keep going. Sleep is sometimes a problem but since I have started practising mindfulness I am having some improvement there too. I try to go to bed at the same time and keep my room dark at night (helps with melatonin secretion). It might be worthwhile for you to have a look at some fibro websites. There are some great links on this one if you go to their recources in side column and click on that. It will drop down with lots of good sites. Their advisory board is full of experts in pain management expecially Daniel Clauw who has written some great papers on this subject http://www.afsafund.org/fibromyalgia.html
Take good care of yourself,

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