new to this website with questions!!

[melaniefernandez]

Hello, fellow Her2's,

I too am on Herceptin and have developed moderate to severe joint pains. I skipped a dose in December to see if the symptons would improve and indeed the pain lessened significantly. To be sure that the Herceptin was the culprit, I opted to have another treatment Jan. 7th and sure enough, the joint has returned.
My question is , has anyone tried a reduced dose of Herceptin to see if the joint pain is more tolerable? I've been led to believe the joint pain is not dosage related. Is that what you've heard? Thanks for your input.melanie

[mts]

I went from weekly to every three weeks to every other week of Herceptin just to get some of the dizziness under control. I also had joint pain, and it came and went with no rhyme or reason.
There is a thread on the her2 board that addresses almost every side effect of herceptin.
I do think that although Herceptin claims to be a free of side effect drug, it is still manifests side effects that are very common.

Are you taking anything else?

Maria

[tousled1]

Malanie,

I too suffer from joint/bone pain with Herceptin. Herceptin is reconstituted with benzol alcohol. You can read the boxed warning. I now have my Herceptin reconstituted with sterile water which means I have to have it every three weeks instead of weekly since they would have to discard the remainder of the mixture.

Here is the portion that pertains to reconstitution of Herceptin from the Herceptin website. If need be take this to your doctor and ask that your Herceptin be reconstituted with sterile water and not benzol alcohol.

Preparation for Administration Reconstitution
Each vial of Herceptin should be reconstituted with 20 mL of BWFI, USP, 1.1% benzyl alcohol preserved, as supplied, to yield a multi‑dose solution containing 21 mg/mL Trastuzumab. The reconstituted preparation results in a colorless to pale yellow transparent solution. Parenteral drug products should be inspected visually for particulates and discoloration prior to administration. Reconstituted Herceptin must be discarded after 28 days.
Use of diluents other than BWFI should be avoided unless contraindicated. For patients with known hypersensitivity to benzyl alcohol, Herceptin must be reconstituted with Sterile Water for Injection; discard any unused portion.

Since I have my Herceptin reconstituted with the sterile water my bone/joint pain is minimal. Best of luck to you.

[melaniefernandez]

Maria,

Thank you for your reply. I was diagnosed in Feb.2007 with invasive lobular L breast, ER+,PR+,H2neu+, Stage1, lesion was 1.5 cm; setinel node bx was negative. I opted for bilateral mastectomies. My R breast did not have disease, but given my family his tory of a mother and older sister with breast cancer (both survivors), it just made sense to me to have them both removed and not have to deal with anymore anxiety-producing mammograms. Starting is April, I received 4 cycles of A/C, 4 cycles of Taxol, with weekly Herceptin for 12 weeks. Thereafter I recieved Herceptin every 3 weeks. The pain in my joints seemed to increase in Sept. after starting the full dose at 3 week intervals. My disablity has been very signifcant to the degree of having to take oxydcodone three times a day for some relief. It has not been fun, as many of you can testify. It's been very reassuring for me to hear that I'm not alone in this journey.

[suzan w]

Your diagnosis sounds similar to mine. I had severe joint pain with herceptin, also started taking arimidex at the same time...so never quite sure which was the culprit. I chose to stick it out and in 2-3 months it was quite tolerable. Also had swelling in ankles that I attributed to Herceptin, it finally went away too. I have been finished with herceptin for 16 months now, still on arimidex. Still have times of stiffness and sore joints (especially my thumbs...go figure!). I like to think of it that perhaps if there is some pain then the drug is doing its thing???!!! Good luck!!