Laurie, What you might want to discuss with your oncologist and chemo nurse is to slow down your herceptin infusion. Most want to give you your herceptin in 30 minutes. I know I had major headaches imediately & other minor side affects when I was given herceptin to quickly.
So I asked my chemo nurse if we could slow down my infusion to at least 45 minutes to a hr? Once we changed it to one hr I never had any more problems.
How long is your infusion time for just herceptin wkly ? When you get your full chemo with TCH all together your IV infusion of herceptin might me much slower therefore you don't have any problems? (Just thinking here.) So when you go in for just the herceptin alone they might be giving it to you to quickly. Its just one thing I can think of you can try that might be causing this problem your having? Talk to your onc & chemo nurse about this.
As to the benadryl the main side affect is sleepiness, fatigue, and dizziness. But everyone's body reacts differently so I am sure your team & you will figure this out. But I would be interested to know how long your herceptin infusion are when you go in for just herceptin? If your onc has ordered extra steroids when you do just your herceptin infusion that must be only to stop the side affects your having with the shakes. When you had the steriods along with herceptin did it stop your problem? I don't blame you for not wanting those darned steriods. But hopefully slowing down your herceptin infusion just might work? (Discuss that as a possiblity with your onc & chemo nurse.) Hang in there.
Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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