HER2 Support Group Forums - View Single Post - MRI of brain-Results are back...

Chelee · 07-27-2006, 06:27 PM

penelope, I really believe 99.9% it HAS to be the herceptin causing these headaches. There are far too many of us women on herceptin with this same complaint. Plus almost every one of us Herceptin gals also has had problems with sinuses. If it causes so many sinus problems...then my thought it must be a herceptin headache. (Can I prove it...no.) lol

As to my last infusion of herceptin...that was 7-17-06. But I have had a "on-going" headache since June 23rd, which at that time was FIVE days AFTER my herceptin. (Strange?) I noticed you said yours was LAST week and your headache started THIS week. That sounds like me back on June 23rd? Hummm...we are on to something.

John, When I started Herceptin back with my chemo regimen...I got weak, shakey in the knees, and a bit of nausea. This would happen EVERY time with my WEEKLY Herceptin. One night I just felt awful...called the nurse advice line...they got a onc doc on the phone. I told him I didn't feel good and I only had herceptin that day. Told him my problems, and right away I might add...NOT very nice...he says "HERCEPTIN WOULD NOT DO THAT" in a very stern voice & he HUNG up on me. (Sure made me feel much better.) NOT!

I finally did a search on google...and I found out herceptin CAN cause nausea. It says so right on their page. You think these onc doc's would believe their patients when they hear the same side affects over and over again about the same drug? But MANY...not all....just don't.

I am with you John...I DO think they should ADD these to their list. Headache, sinus problems seems to be VERY common. I get tired of these doctors saying "That drug would NOT cause that". How would they know UNLESS they had a infusion themselves.

I can't believe your wifes onc said fatigue is NOT a side affect of herceptin. I can tell you first hand it DOES cause fatigue in some, and I am one of them.

When I get my herceptin...its usually the FIRST day I have EXTERME fatigue when I get home. I am SO TIRED its not funny. But I will admit...it gets much better about the 2nd day after a good nights sleep...then I feel pretty good considering.

Chelee

07-27-2006, 06:27 PM	#12
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	penelope, I really believe 99.9% it HAS to be the herceptin causing these headaches. There are far too many of us women on herceptin with this same complaint. Plus almost every one of us Herceptin gals also has had problems with sinuses. If it causes so many sinus problems...then my thought it must be a herceptin headache. (Can I prove it...no.) lol As to my last infusion of herceptin...that was 7-17-06. But I have had a "on-going" headache since June 23rd, which at that time was FIVE days AFTER my herceptin. (Strange?) I noticed you said yours was LAST week and your headache started THIS week. That sounds like me back on June 23rd? Hummm...we are on to something. John, When I started Herceptin back with my chemo regimen...I got weak, shakey in the knees, and a bit of nausea. This would happen EVERY time with my WEEKLY Herceptin. One night I just felt awful...called the nurse advice line...they got a onc doc on the phone. I told him I didn't feel good and I only had herceptin that day. Told him my problems, and right away I might add...NOT very nice...he says "HERCEPTIN WOULD NOT DO THAT" in a very stern voice & he HUNG up on me. (Sure made me feel much better.) NOT! I finally did a search on google...and I found out herceptin CAN cause nausea. It says so right on their page. You think these onc doc's would believe their patients when they hear the same side affects over and over again about the same drug? But MANY...not all....just don't. I am with you John...I DO think they should ADD these to their list. Headache, sinus problems seems to be VERY common. I get tired of these doctors saying "That drug would NOT cause that". How would they know UNLESS they had a infusion themselves. I can't believe your wifes onc said fatigue is NOT a side affect of herceptin. I can tell you first hand it DOES cause fatigue in some, and I am one of them. When I get my herceptin...its usually the FIRST day I have EXTERME fatigue when I get home. I am SO TIRED its not funny. But I will admit...it gets much better about the 2nd day after a good nights sleep...then I feel pretty good considering. Chelee __________________ 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.