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Hi, Bonnie,
You did not mention if you were getting the Herceptin with Navelbine. I have run into folks on this combo who are experiencing the dry cough more frequently than on the Herceptin alone. I have been taking Herceptin alone for many years and I have not experienced either of these symptoms...but it is also important to note that I do not take any pre-meds either, and for what it is worth, I --personally avoid Benadryl for ANY reason -- like the plague...it is a strong immuno - suppressant that to my mind, anyway, is counter - productive to the way the Herceptin works.
This topic of to take or not to take the pre-meds with Herceptin comes up frequently. As far as I can tell, though we could ask Dr. Slamon, the original researchers did not start out recommending the Benadryl be given with the Herceptin. It and the Tylenol were add -ons first suggested by--guess who?? -- an oncologist, Melody Cobleigh, early on when she presented the results of the early 649 trial. Or at least this is the account given in Robert Bazell's book, The Making of Herceptin, a Revolutionary Treatment for Breast Cancer (HER-2). I was not at that historic LA conference, but according to Bazell's account, here is how the Benadryl and Tylenol came to be associated with taking Herceptin.
Apparently Melody had a lot of clinical experience and was closely involved with the folks getting the Herceptin in the 649 trial (some folks on this site may have been in that trial and can give us first hand accounts...). Anyway, she noticed that it was easy to pick out the folks really getting the Herceptin as they would start reacting right away..., sometimes getting running eyes and noses and sometimes even having pain at the site of the injection or worse...in the liver or other places where the cancer had metasticized. Sometimes they would also start running rather serious fevers...To Dr. Cobleigh's credit, she NEVER intended for the Benadryl and Tylenol to become standard pre-meds for every single dose of Herceptin, athough apparently, that is what has happened. Here is the direct quote taken from page 184 of Bazell's book: "As Cobleigh continued her talk, there was a subtle but noticeable change in mood. When she began, she was like many investigators at this meeting, factually and simply detailing the results of a study. But after ten minutes or so, it was resoundingly evident that she was going further, filling in her colleagues on the clinical features of a new treatment they all soon would be offering. She addressed the matter of the fever and flulike symptoms that struck about 40 percent of the patients after they received their first infusion. 'Let me talk heart to heart to the clinicians,' she said. 'Your nurse is going to come running and say to you that this patient looks lousy. And you will go see the patient and you will agree. But relax.' Cobleigh explained that in most cases a dose of the painkiller Tylenol and the antihistamine Benadryl would quickly solve the problem, WHICH ALMOST NEVER OCCURS AFTER THE FIRST INFUSION. She pointed out, to the continuing amazement of even the most experienced of these cancer specialists, that often the positive responses 'occurred VERY RAPIDLY.' "
All I can say is that I after the first couple of times, I have never taken any pre-meds with Herceptin. Nor do I take anything else (as in chemo) with it and well, I am still here--not nine months later as the study seemed to suggest, but many years later. Food for thought anyway. Each person must decide for him or herself, of course. Just try to get the data. It would be interesting to know what Dr. Slamon's take is on the immuno-suppressant hypothesis. I know at first, they were concerned that the body might reject the monoclonal antibody which was originally taken from rats. But in actual practice, it seems that in a way, it is good that the body "sees" the Herceptin tagged cells. Otherwise, the immune system just passes the cancer in those same cells right on by...fascinating, utterly fascinating. Highest regards to all, Gina
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