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judy · 11-16-2005, 02:37 PM

Hello All:

I began receive bi-weekly Herceptin infusions in May after completing 4 rounds of AC and 12 rounds of Taxol. I had primary HER 2/neu 3+, ER-/PR- breast cancer with 3 positive nodes. I underwent double mastectomy in September.

I had some bone pain with Taxol, but began experiencing much more significant lower back pain after beginning Herceptin. The pain I've experienced seems to be lower than that reported by most of you. Mine is in my butt, similar to sciatic nerve pain. It becomes very intense, particularly when lying down. Sometimes I have difficulty moving from lying on my back. I have to draw my leg up to my chest and then slowly roll to one side. The strange thing about this pain is that is can continue unabated for many days or weeks, then very suddenly disappear for awhile. While it is generally on the left, it can also be on the right -- but not on both sides at the same time. My oncologist believes strongly that it is not a cancer recurrance. He has not had any other Herceptin patients who have exhibited bone pain of this intensity and, thus, thinks it could be a lowe back problem (i.e. disc or stenosis). I have the published results of the Herceptin trial and read through the adverse events. I also called Genentech and discussed the issue with their medical staff. As it turns out, of the women in their clinical trials, 22% of the group that received Herceptin alone (and a larger number -- I believe about 30% -- of the group that received Herceptin with chemo, experienced "lower back pain." Exactly what -- and where -- that pain was, I do not know.

However, my oncologist wanted me to have an MRI to learn if, in fact, there is a disc/vertebral issue. I was scheduled to have the MRI. Two weeks prior to the scheduled test, however, the pain suddenly disappeared and did not return for almost two weeks. Therefore, a couple of days before it was scheduled, I decided to cancel the test. Sure enough, three hours later the pain returned! It only lasted for a couple of days, however, so I have not, as yet, rescheduled. I just don't want to deal with any more medical issues right now. If we're sure it's not a recurrence, I don't really want to know what it is at this particular point in time. I'm very busy with my job. It's a bit difficult, because it entails a lot of travelling, which is hard when my back hurts. However, I'm pretty good with pain and think I can get by for a while.

I thought you all might be interested in my Genetech conversation and thought I would post this information.

I'm still not absolutely certain it's the Herceptin. I had an infusion yesterday, and the pain did not come roaring back. I guess I'll find out if, and when, I do the MRI.

Good luck to all.

Judy

11-16-2005, 02:37 PM	#29
judy Member Join Date: Nov 2005 Posts: 8	Hello All: I began receive bi-weekly Herceptin infusions in May after completing 4 rounds of AC and 12 rounds of Taxol. I had primary HER 2/neu 3+, ER-/PR- breast cancer with 3 positive nodes. I underwent double mastectomy in September. I had some bone pain with Taxol, but began experiencing much more significant lower back pain after beginning Herceptin. The pain I've experienced seems to be lower than that reported by most of you. Mine is in my butt, similar to sciatic nerve pain. It becomes very intense, particularly when lying down. Sometimes I have difficulty moving from lying on my back. I have to draw my leg up to my chest and then slowly roll to one side. The strange thing about this pain is that is can continue unabated for many days or weeks, then very suddenly disappear for awhile. While it is generally on the left, it can also be on the right -- but not on both sides at the same time. My oncologist believes strongly that it is not a cancer recurrance. He has not had any other Herceptin patients who have exhibited bone pain of this intensity and, thus, thinks it could be a lowe back problem (i.e. disc or stenosis). I have the published results of the Herceptin trial and read through the adverse events. I also called Genentech and discussed the issue with their medical staff. As it turns out, of the women in their clinical trials, 22% of the group that received Herceptin alone (and a larger number -- I believe about 30% -- of the group that received Herceptin with chemo, experienced "lower back pain." Exactly what -- and where -- that pain was, I do not know. However, my oncologist wanted me to have an MRI to learn if, in fact, there is a disc/vertebral issue. I was scheduled to have the MRI. Two weeks prior to the scheduled test, however, the pain suddenly disappeared and did not return for almost two weeks. Therefore, a couple of days before it was scheduled, I decided to cancel the test. Sure enough, three hours later the pain returned! It only lasted for a couple of days, however, so I have not, as yet, rescheduled. I just don't want to deal with any more medical issues right now. If we're sure it's not a recurrence, I don't really want to know what it is at this particular point in time. I'm very busy with my job. It's a bit difficult, because it entails a lot of travelling, which is hard when my back hurts. However, I'm pretty good with pain and think I can get by for a while. I thought you all might be interested in my Genetech conversation and thought I would post this information. I'm still not absolutely certain it's the Herceptin. I had an infusion yesterday, and the pain did not come roaring back. I guess I'll find out if, and when, I do the MRI. Good luck to all. Judy