Herceptin and joint and muscle pain

julieho

I finished chemo in late December.  I was having weekly herceptin treatments along with two different chemo drugs every three weeks.  Since then I have had only herceptin infusions every three weeks.  I have been experiencing painful joint pain, particularily in my knees and stiffness and pain in some other joints.  If I sit for long periods my knees are so painful and stiff it is hard to walk at first.

Has anyone else experienced these side effects with Herceptin?  If so, what treatments or medications worked?  I have to be on Herceptin until September and don't want to have this pain for that long.

SpecialK

I had problems with Herceptin the first time I had it after I was done with chemo.  I had been receiving it over 90 minutes when combined with chemo, but they ran it in 30 minutes that first time alone.  OMG lots of joint pain and aching.  I requested that they run it slower the next time - back to 90 minutes and I had far fewer problems.  How fast are they running your infusion, and also are you taking any hormonal therapy?

julieho

They run my infusion in a half an hour every three weeks now.  I was hormone negative so I am not having any other therapy now.  

They ran my herceptin over 30 minutes during my chemo also, I also had carboplatin and taxotere - in total my infusion was around 2 hrs when I had all three.  During my chemo I would go every week for the 30 minute dose of herceptin but I had a lot of joint and bone pain from treatment and from the nulasta (not sure of spelling).  Used to keep your white counts up.  

After I was done chemo I had reconstruction on my left breast.  I had originally had a double mastectomy with reconstruction but had a post operative infection in the breast expander on my left side so they had to remove that prior to my starting chemo.  I had that replaced 4 weeks after I finished chemo and after a couple of weeks of recovery I began noticing the joint and knee pain.  I was on pain killers for the surgery so they may have been masking this pain.

I am curious if other people are having this and what works for them.  I will ask about slowing the herceptin infusion down and see what my oncologist says.

Thanks.

SpecialK

If you were getting weekly Herceptin during chemo and switched to Herceptin every three weeks, you are now getting a triple dose each infusion.  It may be that this is causing you some pain, and maybe more so because they are infusing quickly.  You may also be experiencing residual joint/bone pain from Taxotere.  Muscle pain is listed as a potential side effect of Herceptin when used for those with breast cancer.  This may resolve on its own - but in the mean time, some people have gotten relief from Aleve. 

Here is some info on post-surgical pain, as this is possibly not Herceptin related:

What type of post surgical pain will I have?
Post surgical pain may not always be located where you expect. During surgery tissues and nerve endings are traumatized, which can cause pain in many different areas. Types of post surgical pain you may experience include:

• Muscle pain
• Throat pain
• Pain when moving
• Bone pain
• Joint pain
• Incisional pain

Toastiecat

Hi Julie,

Wow, we have a lot of over lapping details! I also started finished chemo is december after bilaterial mx, and then had an infection in my left expander and surgery on that side. And now like you I'm experiencing pretty annoying joint pain and stiffness. It's not an official side effect of herceptin, but I do wonder if that's the cause. I have the stiffness mostly in my hips, and if I get up from sitting for more than 20 minutes or so, I hobble around. My onc said it may be from menopause, but I recently got my period back, and I'm still having the issue.

I don't have a solution unfortunately, I just wanted to say that you're not alone!

xo

JoyE1947

I am getting Herceptin every three weeks and Xeloda two weeks on followed by one week off.  I am not sure if one, or both, are causing my joints to be sore and stiff.  I too hobble around when I first get up from a chair but then the pain goes away.  I also experience pain in my shoulders but this too comes and goes.  A couple of times I had to take an OTC pain medication but usually it goes completely away after getting up and moving around.

Hope you can find a remedy for your aching joints.

Joy

BarbieQ

hi julieho

I am also getting the same side effects as you!! Its really is very painful I was diognosed last May and had Feck and Dositaxil which i finished in october and am due to finish the Herceptin in june.

All i can say is i am taking 500/30 co-codomal X 2 three times a day and are still in pain esp on standind up and also horrible nigley pains in fingers and joints and also pins n needles in hands and arms at night when trying to sleep this wakes me up!!! and i have to change my possition.

          Hope this is of some help to you, i was pleased to see your posting it helps to know your not alone with this awful illness!!

          Good luck and get well soon,  love Barbie Q X 

KarenZ0305

I finished my chemo last July and have been doing herceptin every three weeks since until June. I thought after I finished getting the neulasta shots the pain would go away and I could walk without pain. It subsided the smallest bit but my knees and hips are so bad at the end of the night my DH has to push me up the stairs! I also have pain in my right shoulder which didn't concern me as much since that is my surgical side but now I have pain in my left shoulder! What a sight to see me get out of bed in the morning!

preciouslittleflower

Since finishing an aggressive chemo + Herceptin treatment at the beginning of 2010 I have continued to have severe muscle pain issues. Muscles around my hip, neck,knee and arm are extremely tight often in spasm and ache continually. I had no or little problems at the time of taking Herceptin but am convinced that these issues are effects of the drug. I am 62 too now and so also find it hard to not put these issues down to aging. Doctors say that this post- effect is quite likely but of course will not definitely say it is.  I am extremely interested to know if others are finding the same problem? 

MSSWISS

Hallo, I'm on Herceptin number 10 now and have another 8 (every 3 weeks) to go. The first few were OK but now I have really bad lower back pain when I start to walk and dreadful pins and needles in both arms but pretty much only at night which wake me up so I'm always knackered the next day. I was going to see my doc about this as I don't know what it is attributed to. My nodes were removed a year ago from my left armpit although no lumps anywhere else (I had what is classed as occult breast cancer) where cancer had spread to nodes (6 out of 36) but was not found anywhere else. I have complete numbness on the top of my arm and also underneath armpit so spraying antiperspirent is hit and miss! Does the feeling ever return and what could be causing the pins and needles in my arms? I can't sleep with my arm in the air!!!! My last chemo was end August 2013 (Taxol).

KarenZ0305

I have the numbness still in my arm it's from the surgery. It could take a few years for the numbness to go away because the nerves need to regenerate. I had the pins and needles too but that is gone. I used to be a solid deodorant girl but switched to spray because it felt too creepy. 

lovelikecrazy

I am getting Herceptin every three weeks as well.  I too have the pins and needles and the very slow start after sitting for periods of time.  Once I get moving I am fine.  I am hoping that goes away once I am done with Herceptin.  The numbness in the armpit and back of upper arm is freaky.  Seems like my husband rubs up and down that arm more now than ever before.  Finally had to tell him to stop it, it feels weird and actually hurts a little.  Poor guy, just trying to find some way to touch me.  Ha!  Hang in there ladies.

CameraKim

Hi ladies,

Wanted to chime in! I finished my Herceptin about 6 weeks ago, and I'm already feeling noticeably better. I had back, hip and joint pain, especially at night and first thing in the morning while on Herceptin….happy to say that there is a noticeable difference now. Feeling back to my old self. Any aches and pains now are from lack of exercise and a 15 pound weight gain during the last year….argh!

I have also noticed that my nose isn't as drippy and I seem to be able to smell things again.

Now if I could just blame this tummy on Herceptin……Wish it would just magically go away, too!

Good luck to all of you!

DizzyBird

Hi all, I've just joined the forum and am struggling with finishing my chemo and the Herceptin.  I have two rounds left of the Taxotere, and just completed my fourth round of Herceptin (every 3 weeks for 18 treatments).  I'm seeing my oncologist on Friday and will ask about slowing down the Herceptin drip and hope that may make a difference.  I am having pins and needles in my legs and can't turn over in bed at night without waking up from the pain.  I'm on Warfarin for blood clots so need to find out what pain medication I can take.  It is taking me a while to get going, although once I am going it does not seem to make the pain go away, it just drops to a dull roar for a while!  I'm sorry we are all going through this, but relieved that my problems don't seem out of the ordinary.  CameraKim, your comments give me hope!

KarenZ0305

DizzyBird I felt your pain. I'm a year and a half out from treatment and I thought it would never end. Last summer (and after I finished herceptin) I started B complex and the aches went away. What you are dealing with now is awful terrible should only be done to psychotic criminals but it will be over soon and you won't look back and say "it wasn't sooo bad" (because you won't, it's not like childbirth!) you'll say "I was strong enough". 

Anonymous

I am having severe hip pain on the left side at night, along with my ribs on the left side. Seems to be fine during the day. It's difficult to get moving after sitting for awhile. I will be on Herceptin until August. I've gained 15 pounds and can't seem to get a handle on it.

DizzyBird

Thanks, KarenZ035 - your comments about giving this to psychotic criminals made me laugh!  I have found out I'm ok with codeine based pain tablets with the warfarin, and will pick up some over the counter.  SlowDeepBreaths, I wish I had gained only 15 pounds.  Six months before being diagnosed with breast cancer I broke my foot and was effectively house bound.  I had surgery in March 2013, was discharged by my surgeon at the end of April 2013, and back in the hospital with my bc diagnosis on 7 May! My weight gain has been one of the most depressing aspects of all this for me.   It's hard to deal with everything, so one step at a time and be kind to yourself (I am trying very hard to take my own advice!), we will get there.

Anonymous

DizzyBird, Sorry to hear about your foot. I know those are slow to heal and can be painful for quite some time - even when healed. I'm usually pretty good about keeping my weight stable, but after chemo weight gain, it doesn't want to budge. As you say, we will get there.

DizzyBird

I saw my oncologist today and told him about the pain I have been having.  He's very concerned and is arranging an MRI next week as soon as possible.  Apparently my pain is not the normal myalgia associated with Herceptin so the fun and games begin again.  I had one more round of chemo next week, but this has now been cancelled, so I am done with the chemo.  It seems a bit of a damp squib after the last six months - I feel cheated out on my last day!  Still, I can put that behind me.  On the downside, I failed in my last attempt at an MRI because I am so claustrophobic.  This time I will be sedated.  I'm feeling pretty low - does this ever end?

KarenZ0305

DizzyBird - so sorry you are struggling. I too am claustrophobic so I can sympathize. This will all end soon and then you can move on and get back to your life the way it should be lived. 

DizzyBird

Thanks, KarenZ0305.  I have my MRI booked for Wednesday morning and have been given diazepam to take about an hour before the scan.  I hope it works!  I've also been given prescriptions for a high dose codeine tablet for pain relief.  I'm doing my best not to try and 'self diagnose' but the temptation is there.  I hope it is just a reaction to the Taxol and I will feel better once this is worked out of my system.

SpecialK

Dizzy - if your onc approves you might try a combo of Vitamin B6, 1500mg of Acetyl L-Carnitine and 30g of powdered L-Glutamine, daily.  It may improve your pins and needles and/or pain, which also sounds like it might be a bit of chemo-induced neuropathy.

annika12

never thought my arm pain could be from herceptin will talk to my mo next time. Did fine all through taxol hercptin combo but I got a good dose of Steroids then !! Hmm got me thinking  

Debdawn64

So good to hear your news, thanks for sharing! I too have had joint and muscle pain and it is great to hear it goes away after the herceptin is over! It's also great to know I will be able to smell again! Thanks so much for your post!

Kristinpiet

I finished 17 rounds of herceptin (first six included tc) in October 2011 and I am still miserable.  Have been to orthopedic, endochronologist, rheumatologist, chiropractor and general practitioner...only relief I have gotten is from steroids but I refuse to stay on them long term

I have migraines, joint pain and swelling, muscle stiffness, short temper, insomnia, fatigue and more 

I wear gym shoes just about every day, no more heals for me

I had to stop taking the chemo pills after trying three different versions...side effects were even worse

Yes I am going on four yrs of cancer free but my quality of life is suffering and I am  47 yrs old

Some relief from turmeric but nothing miraculous -b12 helps with fatigue just started a new joint relief med...only day three...too soon to tell

Anti- inflammatory and pain drugs make headaches worse 

Any ideas???

Girlstrong

Hi  Kristen......I have been on Herceptin since November 2013 and over the last 6 weeks I have developed joint pain and swelling in my hands and joint aches in my feet.  My whole body feels achy..like I need a really good massage or something.  My MO thought that this could be residual effects from the Taxotere.  Keep us posted on the new med your doing; wish you the best of luck. 

premmie1

I am so glad I found this post.  I was going crazy.  My doctor told me I would feel better after my last chemo treatment and herceptin I would have barely any symptoms.  After the 1st round (which was 30 mins) of hercptin without Chemo I had the worst muscle aches.  I would sit down and could hardly get up and walk.  I was thinking something really bad was happening until I found that other people are having the same side effects...Thank      you Thank you

April8

hi all: I had my first Herceptin yesterday and have had terrible lower back and leg pain. The nurse thinks it is from the flu shot they gave me but after reading these posts I'm thinking it's Herceptin. I will see how it goes next week. Has anyone tried acupuncture for the pain? I've never tried it but hear it may help.

KarenZ0305

April I finished herceptin May 2013 and still have aches. I just started acupuncture and it seems to be helping. I think my aches now are from tamoxi

Pipandor

After reading this thread, I'm pretty sure the growing pain I am feeling my feet and hands, especially in the morning and after sitting must be due to Herceptin. I started getting it weekly with taxol in March and have been receiving it alone every three weeks since June. Sure hope the pain will resolve when treatment ends in March because it is becoming difficult to walk at times.

srichards

I too am experiencing pain after having herceptin and perjeta infusions. My knees and other joints ache and when I'm immobile for awhile and I get up to move around it's worse. I would love to hear about anyone finding ways to manage this.