[Lani]

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Please post your two cents on Herceptin "side effects" real or perceived!

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Please also note my previous posts/reposts--about once ever year or two, about asking your infusion nurse to mix your herceptin with saline only, skipping the benzyl alcohol as a trial to see if that avoids your post infusion pains. This has been tried by quite a few on these boards , apparently with good effect.

Skipping mixing with the benzyl alcohol can only be done with the herceptin vial you alone get ie if your weight is such that you need more than one vial, say 1.25 vials, they will only be able to do it with the 1 vial and not the .25 vial as herceptin is too expensive to waste the other .74 (benoyl alcohol is a preservative and necessary if they are not giving the other .75 to someone else right away).

Again, it seems not to have been published but has been noted by quite a few who frequent these boards, that skipping the benzoyl alcohol avoids many of the musculoskeletal aches and pains that some experience.

I am in no position to and am not qualified to make any recommendations--am just reporting what others have found.

Others have asked their oncologist and infusion nurse--to my knowledge noone has reported that either their oncologist or nurse could fathom any harm in skipping mixing the preservative in as long as the infusion will be given upon mixture of the herceptin and saline.

Good luck and please post your experience on theHER2 Support Group Forums > Herceptin / Tykerb

Please post your two cents on Herceptin "side effects" real or perceived!

thread so others can benefit from your experience. I am hoping someday someone will "do something" with the experiences described as pharmaceutical companies seem not to complete their required post-marketing analysis though promised when FDA approval received (there doesn't seem to be as great a motivator as $$$$--once approved, there seems to be much less passion to ensure it is safe, help find ways to avoid side effects in the much larger ** group of people taking the drug)

** compared with those in the original trials which gained drug approval