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Especially To Linda BL,
If it is any consolation to you, as I take the higher 6mg dose that is the norm for the every 3-week protocol though I take it only every 6 weeks, I just wanted you to know that STILL, after 8 years of this illness, and after 6 years on some dosing or another of Herceptin, I many times get sick like you with fever and chills and horrible bone pain and sometimes stomach upset for 2 to 3 days following my herceptin infusion... I will just share with you what I have discovered about this...just my opinion.... What you are experiencing is a healthy and strong and to be desired immune response to Herceptin. Many times, over the long haul, folks who continue to respond like this live on for years and years. You probably have a healthy immune system since in my mind you made the RIGHT decision of discontinuing the chemo. Sounds like you are not taking the pre-meds either which again, to my mind is the RIGHT and only way to take Herceptin WITHOUT the pre-meds. Now, here is what my take on it all means....If you knew your tumor markers...you could see graphically so easily what I am going to convey. If you are still having pains like this...it means your her-2 is continuing to come right back up over the 3 weeks in-between infusions. This is a bit scary as it means your particular case is rather agressive but certainly managable with the Herceptin. As a general rule of thumb, the worse you feel after a dosing, the more tumor/lesion debris has been targeted by the Herceptin and the more the body has to clean up. The thing to be certain of, though, is that after each cycle, your markers are not rising, over time, slightly higher, slightly higher...as I have tried so many dosings over the years..I have lots of experience with this...the numbers gradually ease up over time and then you blink and suddenly they are doubling every week and you are becoming symptomatic again and kicking yourself for not doing this or that...blah, blah, blah... Take a deep breath, get an extra dose, get the numbers back into range and start taking as much or as little Herceptin as you need to be keeping them there...CA 27/29 around 10/ Serum her-2 less than 12...and guess what...with less tumor burden, less herceptin will "HIT" and so there will be less tumor debris to clean as less and less lesions are forming and guess what??? pretty soon, you'll be bouncing back from your treatments in as little as the next day. For Herceptin alone folks, remember diet, walking outside in the sunshine, certain supplements really can MAKE a big difference not only to energy levels but also in being NED and happy for years to come. Wish lots of good luck to us all, Gina
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