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

[tousled1]

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]

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]

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]

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

[atdec05]

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]

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]

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

[tousled1]

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