CSN Login
Members Online: 13

Joint aches ... is this common after chemo?

hippiechicks's picture
hippiechicks
Posts: 312
Joined: Sep 2012

I was just wondering if anyone else suffers from horrible joint aches and bone pain after chemo.  I thought it was the nulasta shot that was doing it.  I do think it contributed.  But, I am still suffering daily from this continued pain after treatments have ended. I also continue to have weak muscles and everything seems hard to do.  I am frustrated and was curious if others go through this and if it is something that will get better over time or a permanent side effect such as the neuropathy has been.

annalexandria's picture
annalexandria
Posts: 2194
Joined: Oct 2011

ever since doing my second type of chemo.  I hate to say it, but that was in early 2011, and I'm still dealing with it.  That's what I take the pain meds for.  One theory for the cause of this kind of pain that my naturopath suggested is "leaky gut syndrome".  Basically the idea is that chemo damages the lining of the gut so much that tiny particles of food escape into your system, into parts of the body where they are not supposed to be.  She felt that they tended to "pool" in the extremities, which is why many cancer folk complain about pain in the hands and feet.

She had me do food allergy testing, and I have to admit that certain things that I'm allergic to (like eggs...sob.  I love a good egg salad) do seem to up the pain for a few days after eating.  Other things that I didn't get tested for also seem to trigger the pain, including aspartame (good-bye, Diet Coke) and red dye #40 (I CANNOT LIVE WITHOUT HOT TAMALES AND CINNAMON BEARS).

I have a feeling that a radical dietary change might really help, and I may get up the will power to do it one of these days.  I also tested as allergic to wheat, whey, and a bunch of other stuff, so life as I know it would essentiallly be over.*

*Overly dramatic, but I do love to cook and eat, and the idea of living off vegetables and meat alone doesn't thrill me.

Have you talked to your doc about the pain?  Any suggestion?

Trubrit's picture
Trubrit
Posts: 1411
Joined: Jan 2013

My joint pain came on weeks after I had finished chemo.  When I first wake up I can't bend my fingers, and my hips, shoulders and knees are so stiff. Same when I've been sitting down, even for a short period of time. 

I confess I hate this worse than the neuropathy. I'm an active person, well I was, and to be hobbled by joint pain is tough. 

I am hoping that it is temporary, just like I am hopng that the neuropathy is temporary. 

Still, if I was given a choice, joint pain or cancer, you know what it would be.

 

mukamom's picture
mukamom
Posts: 357
Joined: Oct 2010

year since Robert has had any "chemo". He was treated with FOLFRI and Erbitux. both with and without avastin for 3 and a half years.  He is currently under tx with avastin and a trial drug, which is in the same class as avastin, but works in a different way.

Joint pain, neuropathy, and muscle pain are a given every day.  It had become so bad;  his PCP  Rx'd him gabapentin and MS contin daily and oxycodone for break-thru pain. He also takes a muscle relaxer and dilaudid at times.  It's a wonder he even functions as well as he does. (he does sleep A LOT, though).

But, as trubit said....given the choice...

 

Hope you can find relief!

 

Angela

 

 

 

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

From Xeloda and Folfox I have joint a muscle pain. Interestingly mine is concentrated on the upper back and the ribcage, making it hard to breath. I have some pain in my hips, maybe from the radiation. Nothing in the extremities though.

Problem with these aches and pains is that they cause anxiety about possible metastases.

Cancer and chemo cause a variety of sneaky symptoms.

Laz

hippiechicks's picture
hippiechicks
Posts: 312
Joined: Sep 2012

Well THANK YOU all ... I love reading this forum.  I  don't post much about myself .. I usually think I am being overly sensitive ... and a little impatient.  It is so reassuring to hear I am not the only one out there with this.  As stated ... given the choices ... certainly we will take this .. but to know it is something that goes with the territory is a relief. 

Ann .. I have mentioned this to my Doc .. ummm... every other week to be exact ... lol, and he just types it in the computer and doesn't say anything about it. I will be seeking some more natural diet/herb remedies real soon. 

I must say ... I was getting a bit nervous with the not being able to stand up after sitting for some time .. not being able to drive my standard car from the continued hip pain .. and of course ... the biggie "Recurrence".  Also, I have been working with PT and after my last appointment I have not even been able to raise my arms .. urrrggghhh... heating pads and message I guess!

((((HUGS)))) to you guys!! Cool

annalexandria's picture
annalexandria
Posts: 2194
Joined: Oct 2011

Will they be checking things soon?  For what it's worth, it sounds like what I have, super stiff, hard to do basic tasks, etc, and I've been scanned to pieces...no mets.  I'm betting your pains are something similar...seems like this is a common problem.

Have to say I don't care for doctors who just nod their heads and put something in the computer when you talk about having major pain!  My onc suggested that I move to Hawaii when I mentioned that my pains got a lot better when the weather was hot.  Felt like asking him if he was willing to cough up some of the 500K he makes a year to help finance my move (he hates me-he might have been happy to pay to get rid of me).

Has he at least given you pain meds?

hippiechicks's picture
hippiechicks
Posts: 312
Joined: Sep 2012

Yea.. that is the pain .. very very stiff. 

I am due for my next CT in Nov.  I just had a clean one in Aug. .. but I am sceptical of them.  I have had several neg. scans when I was clearly packing some tumors.  CEA is always 1 or below. So, that marker is out for me.  Nov. will be my first one while off chemo since last Jan .. so we shall see!

My doctors have offered me every med in the book I think.  I am not a fan of drugs that make me loopy .. so I try other remedies.  This is what prompted my question, as I am not going to be able to continue this way without something if it is going to be permanent such as the neuropathy.  Now that you mention it, I also felt better while vacationing in the warm temps.  I have another apt soon and will have to open the med discussion I guess. Some days are just unbearable. 

 

saussureainvolucrata
Posts: 52
Joined: May 2013

Laz's comment about these pains causing anxiety about possible metastasis is so true. My mom has been having pain in her lungs (especially when she takes deep breaths or coughs) from Folfiri+Avastin. Previously, she was on Folfox+Avastin, which made her entire body sore for 3-4 days after each treatment. 

jen2012
Posts: 1195
Joined: Aug 2012

Well I kinda glad to read all this...not really because I'm sorry you all have to suffer.  But my husband has been having horrible hip pain for about 3 weeks now.  Actually since his last dilation procedure.  His 3rd dilation, hopefully leading up to a successful ileostomy reversal...    He's been taking leftover vicodin from back pain several years ago - pills are expired but said they were somewhat working.   It's been a bit nervewracking wondering about all those bone spots that came back negative after biopsy..but what if.  Or what if it's a lymph node pressing on something...  Ugh.   Went to the onc's thursday and the APRN thought it was probably just a back issue - maybe the positioning at the last procedure threw something out of whack.   Or maybe just an "old age" type of thing.   I know it was horrible to see him with his 80 something dad yesterday, not sure which of them looked worse trying to get around. 

Oh the aprn gave him a prescription for tramadol - which I believe is non-narcotic??  and he says it's helping and not making him loopy...

annalexandria's picture
annalexandria
Posts: 2194
Joined: Oct 2011

In both hips?  My doc said that this is a sign that it's not mets, that it would be highly unlikely to develop bone mets in the same spot on both sides of the body.

I may have to look into the tramadol...maybe it would be an option for me.  I seem to be stuck at 4 pills (down from 6), having trouble going further.

hippiechicks's picture
hippiechicks
Posts: 312
Joined: Sep 2012

I am so sorry to hear of your husbands pain!  I know the anxiety you are feeling, and yes .. I have heard the same thing about the chair positioning.  Nah.. this is real joint pain, stiff when trying to stand, pain in shoulders if I do even simple tasks.  It is just aweful .. I look silly .. just silly trying to get up out of a chair or the car at times. 

Thank you for the tramadol referral. 

I hope your husband finds some relief soon .... I would be very leary of the "it's an old age type thing" response ... not when we are cancer patients. 

My best to you and your husband!!

jen2012
Posts: 1195
Joined: Aug 2012

Thanks AA & HC!  Actually the tramadol didn't help for long, so now he's been using the vicodin and they gave him a prescription for percocet but we haven't filled it yet.  I may try to get him to do acupuncture again as it has seemed to help in the past.  

The pain moves - it was both hips, but now it's more the left knee.  Strange that it really started up after the dilation procedure the beginning of Sept - following a fever and chills right after the procedure.  He mentioned it to the anesthesiologist, surgeon, nurses..anyone who would listen yesterday, but they dont' think it's related to the procedure.  He had another dilation yesterday and ended up with a fever and chills again - they say from the anesthesia.  He has had disc issues in the past, so he's thinking that is what this is again, but I don't know. 

Same as you HC - he has a hard time getting up off of a chair or out of the car and looks like a 90 yr old.  

Hoping for pain relief for all...

annalexandria's picture
annalexandria
Posts: 2194
Joined: Oct 2011

I don't know what dosage he's at, but for me, I didn't get much pain relief with vicodin until I started taking one and a half 7.5/325 mg pills, 3x per day.  This isn't exactly a low dose, but it just wasn't very effective prior to that.

I also took percocet/oxycodone a couple of years ago, when the growing cancer was causing pretty intense pain...got physically dependent in about two minutes. so I'm very leery of that stuff now.   However, if that's what it takes to help the pain, then I think he should take it.  It is stronger than vicodin.  There's always time to get off the stuff later, once he's in better health.  I'll give him tips!

LindaK.
Posts: 312
Joined: Apr 2013

This is pretty much my husband's only complaint toward the end of his 12 treatments and the 2.5 months since they ended.  We are flying next week and I'm worried about him being comfortable on the plane, but we have two not so long flights, so hopefully it won't be too bad for him.  It's hard to even take a short walk because he hurts so much.  They said this could last 6-12 months or forever.  We're also planning a trip to Vegas (from NY) but I found a few places where you can rent scooters and they will deliver them to your hotel for free!  He only takes Ibuprofen occasionally when he overdoes it.

He'll be glad to hear he's not alone!

Trubrit's picture
Trubrit
Posts: 1411
Joined: Jan 2013

I have a friend who has RA.  We sat next to each other at a meeting yesterday and when we both got up to leave, Rita, a young  70's and me a young 50's both looked like we were as old as the hills. 

I do so hope that this goes away for me, though I know my dear friend will live with hers forever, and if she can, well, if I have to then I can too. 

Life sure deals us all some lousy cards at times. 

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network