HER2 Support Group Forums - View Single Post - Herceptin Joint Pain

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!

12-06-2006, 09:21 PM	#4
futurefocus Member Join Date: Sep 2006 Location: Pleasant Hill, CA Posts: 11	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!