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

tousled1 · 12-06-2006, 08:19 AM

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.

tousled1 · 12-06-2006, 08:23 AM

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.

futurefocus · 12-06-2006, 09:21 PM

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!

tousled1 · 12-06-2006, 09:44 PM

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.

futurefocus · 12-06-2006, 09:50 PM

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

atdec05 · 12-07-2006, 04:13 PM

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

futurefocus · 12-07-2006, 04:19 PM

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.

futurefocus · 12-07-2006, 04:21 PM

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

gin-tx · 12-08-2006, 06:07 AM

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

myu2050 · 03-22-2007, 01:27 PM

It is the hereceptin, I had the exactly same experience as you do now. Hang on, it will get better.

Mary

gin-tx · 03-22-2007, 05:54 PM

Dear Mary,

Thanks for info. Since I've been losing weight the bone pain has gotten better except in back I have a malignant tumor on spine, have had radiation and it is staying same, not improving or getting worse. Just there. My biggest problem I had after last treatment was terrible stomach problems and fatigue, I was in week-end and did not work on Mon and should have stayed home Tues but pushed myself to go to work. Only work 6 hrs a day, so feel I should be there as much as I can.

Keep in touch and let me know how you are doing.

ginkott1@aol.com

misskuwait · 10-06-2007, 11:36 PM

HI I have been on Herceptin for a year for first stage Breast cancer. Had my last infusion in August 2007. My back pain and general all over aches and pains has got gradually worse over the year of treatment and seems now almost unbearable at times. My body aches constantly and when I sit now at the laptop I have to put cushions at my back.
Exercise seems to help when I swim the pain goes for a while. I am wondering how long these side effects will last. I have a "crunchy knee" when walking upstairs. Sometimes I fear the cancer has come back but I think that logically it has to be the Herceptin. I also take Tomaxifen and wonder is this a bad combination of drugs. When I tell my onc about the back pain she just brushes it off.
I am happy to know that I am not imagining things and unfortunately there are others out there who are suffering also.

gin-tx · 10-07-2007, 06:09 AM

I think everyone's pain level is different. I had joint and back pain before I started treatment for bc so can't be sure they are even related. Have you tried any over the counter items. You might ask your dr first to see what he recommends. I have had back and knee pain for so long, I think a lot of it is degeneration from age.

ginkott1@aol.com