Herceptin Joint Pain - Does it last the whole year??
 

Hi there ,
Only had 2/17 herceptin treatments and was wondering if the stiff sore joints every morning and after sitting for a while is very common and will likely last the whole year. This is my first post so hopefully I'll figure out how to read and respond to anyone who kindly offers info.
Thanks a lot,
Christine

Hi Christine,

I started Herceptin in June and am plagued with bone/muscle/joint pain. Since I am only on Herceptin, I know that it is the culprit. I have talked to my oncologist about it but she seems to disagree with me that it's the Herceptin. I'm going to a pain management doctor wnad receiving pain medication from him which really helps. According to the pain management doctor muscle/bone/joint pain is a huge side effect of Herceptin. I know that with each infusion I get the pain gets worse. I have tried getting the Herceptin every week and then switched to every three weeks to see if the pain would be less. No difference in pain level whether I get the infusion every week or every three weeks. So I have opted to go the every three weeks. Matter of fact, I go this Friday for my Herceptin. I have been complaining since day number one that Herceptin and I just do not get along very well. At least all my scans and markers are good so the Herceptin must be doing it's job. Hang in there as I understand that once you stop the Herceptin the side effects slowly diminish. There was a post entitled "Herceptin side effects - real or perceived" on the board. You may want to do a search and find the thread. I'll look for it and post it if I find it.

Christine,

I found the link for the thread dealing with side effects of Herceptin. You may want to read it. It will at least put your mind at ease.

Please post your two cents on Herceptin "side effects" real or perceived!

You may also want to post on the HER2 board as that is read more frequently.

herceptin Side Effects
 

My first response but I am so thankful that this site is available. I have been suffering side effects since day one ( I have 6 months behind me now). I was told that this would be the easy part....but not for me. I have had all the above...especially joint, muscle , nerve pain. It is very painful...in fact so much at one point I could barely get out of bed. Just so you know during the regular chemo I was walking 9-12 miles a week on my off weeks....I can't even walk a couple of blocks on Herceptin. I feel like my muscleoskeletal system is as brittle as my nails...dry and ready to crumble. I did ask after 3 months of treatment (so late 'cause I thought side effects were residual) that they remove the perservative from the Herceptin ( which is benzole alcohol...a very nasty chemical). This seemed to help a little ...decreased the accumulation affect so that I could continue my TX. My onc contacted the original 3 drs. of the longtitudinal study in which the FDA approved it and they all said that these side effects I was having were very rare and unheard of. One did say that he knew only one pt. that went into renal failure due to the autoimmune system esponse on itself. A little scarey but I feel better that others have similar concerns and many have done well after it. I have been on a Herceptin vacation for 4 weeks as my Onc couldn't tell me if all my side effects would be permanent or not. May run some more blood tests for things like Lupus or other autoimmune issues to rule out that my joints are not being damaged in the long or short run. During the break the nerve pain is gone, rib pain more prominant, weight gain decreasing consistantly, nails not so brittle, joint pain better but still not normal, nausea more noticeable and even noticed some eye lashes have fallen out, stiffening when sedentary still present and fatigue is still pretty bad. Hope this helps. Thank you everyone for sharing. Here's to our future!

futurefocus,

I'm sorry to hear you are suffering so much with the Herceptin but at the same time thankful that I'm not the only one. I am just about at the six month mark with my Herceptin and believe me I can't wait until my year is up. My oncologist says the same thing -- never heard of bone/muscle/joint pain being a side effect. I'm not mistaken they mix the Herceptin with benzole alcohol. I believe that Lani posted something to that effect. In her post it also stated that the Herceptin could be mixed with saline water. I think that I will ask my oncologist about that -- at this point anything is worth a try. I do fully understand how your musceleosketal system feels. Some days I get up and it just feels like my feet are just going to snap! I guess all we can do in hang in there. Thanks for sharing. At least now I know I'm not alone.

Yes they reconstitute it with saline water....much better. The perservative is for the Herceprin shelve life not our lives!

Hi all,

I've been experiencing joint & muscle pain as well. I had some blood work done and they ruled out thyroid, rheumatoid arthritis, and autoimmunite problems.

The rheumatologist could only diagnose me with creptitus. Do your knees make a crunching sound when you go up & down stairs?

I am taking Glutamine, but so far no difference. Can you point me to the thread that talked about mixing Herceptin with saline.

My last treatment is Jan. 31, so I'm hoping I will make it through with no permanent damage to my cartiledge.

- Anna

I don't know where the thread is but I can tell you I read it on the official website for the herceptin drug. It suggests that if there is a reaction try and remove the perservative and reconstitute it with sterile H2O. Hope this helps. I am new so not so familiar with the threads yet..sorry.

Glad to hear your are almost done...Hang in there...it can only get better!

Here is what you are looking for and it was posted by Lolly.

It's possible you're having an allergic reaction to the dilutant being used, which is normally benzyl alcohol. Here's a quote from the Genentech web page regarding dosage instructions for Herceptin, along with a link to the page:

"...If the patient has known hypersensitivity to benzyl alcohol, HERCEPTIN must be reconstituted with Sterile Water for Injection (see PRECAUTIONS). HERCEPTIN WHICH HAS BEEN RECONSTITUTED WITH SWFI MUST BE USED IMMEDIATELY AND ANY UNUSED PORTION DISCARDED. USE OF OTHER RECONSTITUTION DILUENTS SHOULD BE AVOIDED..."

Genentech/Herceptin Page
http://www.gene.com/gene/products/i...#administration
<!-- / message --><!-- / message --><!-- sig -->

thanks for the info, but would joint pain be considered an allergic reaction? I guess I'm wondering what the connection is between mixing Herceptin with alcohol and joint pain.

- Anna

Anna,

I don't know what the connection would be. I called my oncologist today and discussed having the Herceptin reconstituted with saline water for my infusion tomorrow. I'm thinking in terms of alchol dries things out and perhaps that is what is happening when it's mixed with the Herceptin -- it dries out the cartledge or something in the joints. At any rate, I'm hoping that tomorrow when I get my infusion the Herceptin will be reconstituted with saline water. The point I'm at now with the muscle/joint/bone pain I'm willing to try anything if it might help.

Bone pain from Herceptin
 

Dear Christine,

I have been on Herceptin with Aridia since June, I think the aridia causes more side effects for me. I had arthritis and bone pain before I began treatment so can't tell if it's more or the same. I do feel stiff some mornings when I wake up. I find I have more pain in feet than anywhere else, figured it was just getting older. I'll ask the onc when I go back on Dec. 22 for a treatment and also see the dr. Last time I received treatment only, doc was on vacation.

Good luck with your treatments. I wish I only had 17 to do, don't know how much longer I'll be going, I tried to get an answer and he wouldn't comment. My surgeon said he had a patient that just got off Herceptin after 3 yrs. Oh well, if I have to I'll continue.

hugs,

ginkott1@aol.com

I was on Herceptin for a total of 1 year. 3 months with Taxol. My last treatment was March 2006. I am still experiencing painful feet and joints. Some days it takes a lot of effort to walk or work out. Once I am up and moving, they get a little better until I sit down again. I am having a hard time finding shoes that are comfortable. I don't know if something else is going on, I will be seeing my onocologist next week. I was diagnosed with Stage III unusually aggressive breast cancer in Oct. 2004. I have had left mastectomy with reconstruction. Now if I can get my feet and legs to stop hurting, I certainly would feel better.

I feel better knowing that I am not the only one with feet pain.

I enjoy reading everyone stories.

Cammie

Hello everyone,

Well, I had my Herceptin treatment today and they reconstituted the Herceptin with Saline water per my request. So far so good. Guess I'll know in a day or two whether it makes a difference in the bone/muscle/joint pain. If it does then I will have my remaining Herceptin treatments reconstituted with saline water. Will keep you posted.

Pain from herceptin
 

Dear Cammie,

I have not been on Taxol so don't know what the side effects can be, maybe with it combined with Herceptin it makes for more body aches. I don't know. I have noticed I have pain in my left foot on the top of foot and where the instep is (I think that's the top of foot). I thought it's just me, I have arthritis in various parts of body, lower back, knees, and maybe even feet, I don't know. Don't want to go to a podiatrist, they like to operate. And I'm not doing that. Had foot surgery once, it was awful, never again as the pain was so bad. I may ask my onc when I see him next week if this pain could be from Herceptin. I find my biggest problem is being unable to sleep the night after I have treatment. I'm wide eyed all night long. Maybe because I sat all day and did not exert myself. Who knows. I have sleeping pills, anti depressants, pain meds (2 kinds) and am hesitant to mix too much as I take about 10 RX on a daily basis. Keep me informed what your dr has to say. I'm interested.

hugs,

ginger

I was on Herceptin/Taxotere wkly for 11 treatments March-June couldn't do last treatment because it dmg my lung(taxotere). Back on Herceptin July - Current to end 3/29/07. Then I understand I won't do anything else unless there is reoccurrence. Mamo on both was clean Nov. 2006. So I am glad to hear other people having problems with side effects and this is not in my head. I have joint pain in knee's, shoulder and hands, horrible neuropathy in hands and feet and fatique so bad sometimes I can't do anything but sleep. My disability carrier is on my back about returning to work but I don't see how I can work particularly with this horrible fatique although I know some do. I fear cancer has come back because fatique seems to be getting worse. I just don't know what to do, but my next appt is 12/27 so will discuss all with onc and see if he can advise and maybe alleviate some of my fears.

Thanks for listening
DX 10/11/05
Lumpectomy 11/22/05; DX IDC; Stg IIA;1 Sent Node Pos.; Grade III; HR/PR -; HER2 +++
AC - 12/29-2/28/05
TX/HERC 3/7-3/29 Wkly; Taxol discontinued 3/29/06 Alergic Reaction
Taxotere/Herc 4/7-6/14/06 8 Wkly
Herceptin E/3 Wks 8/06 - 3/29/07
33 Rads 8-9/19/06
Clear Mamo Nov 2006

Joint Pain
 

I have not have joint pain that you describe so maybe it was the combination of Herceptin and Taxotore mixed together. I get Aridia and have some knee pain but had that before I started treatment 6 months ago. You mentioned neuropathy, I always thought that was associated with other conditions such as Diabetes but maybe I am incorrect.

This is my second episode of BC, first 11 yrs ago. I was rediagnosed in April 2006, much more aggressive than first suspected. My biggest complaint is with the area that had a malignant tumor on spine and I had 18 radiation treatments to get rid of that. I cannot lie flat on my back, pain is terrible, I take pain pills and try to function each day. Still work part time but don't know for how much longer I'll be ble to manage that. At this point have no idea how many more Herceptin treatments I will be getting, I suspect I'll be doing this a yr from now. Keep me informed of your progress and how you are doing.

hugs,

ginkott1@aol.com

Guys I've been on Herceptin and Arimidex since Jan 2005. Stiffness all the time after sitting etc. Joint pain went after about 6 months. But thankfully, I'm still here!!
Cheers and best wishes, Roz

Joint Pain
 

Dear Roz,

I think your pain is from the Arimidex. I had talked with people when I was taking radiation for my spine, one of the ladies said her mother had terrible joint pain from the Arimidex. I don't think it's from the Herceptin unless it's from taking the two close together. Ask your onc what he thinks. I think in time they are going to put me on Arimidex, hope I won't have such side effects. As far as the Herceptin I have no pain, the only pain I have is in my spine and it's from the location of the malignant tumor that was radiated.

Keep me informed of your progress. And a healthy and happy new year to you.

hugs,

ginkott1@aol.com