HER2 Support Group Forums - View Single Post

08-11-2005, 10:52 AM

Lisa,

Thanks for sharing your adorable pictures with us!

Would you say that as a Stage 1 "NED" HER2+++ and almost 3 years out who is now being blocked from receiving Herceptin, it would be a good idea for me to have a brain MRI?

I've had a bone scan at time of diagnosis, and a chest CT and breast MRI since then along with mammograms, and my markers have stayed well in the normal range... but I don't believe in the "wait for symptoms" theory, partly because it is so hard to judge whether a symptom is meaningful or not. Right now I have a "symptom" I am watching, a sore left lateral rib area (I am a left lumpectomee)... and over time I have had brief pressure-like pains just inside the skull that I never had before diagnosis. I truly don't know whether to blame those pains on the sudden huge lack of estrogen to the brain due to past chemotherapy or not.

My personal theory on recurrence for HER2+++'s is that most of us eventually do recur. I believe Barbara is living evidence. Data on HER2+++'s hasn't been collected ,long enough and what they do have hasn't been accurate enough. And since I am now stuck in the group who can't have Herceptin until I do recur, I would like to have your opinion.

Thanks

A.A.

08-11-2005, 10:52 AM	#12
AlaskaAngel Guest Posts: n/a	Lisa, Thanks for sharing your adorable pictures with us! Would you say that as a Stage 1 "NED" HER2+++ and almost 3 years out who is now being blocked from receiving Herceptin, it would be a good idea for me to have a brain MRI? I've had a bone scan at time of diagnosis, and a chest CT and breast MRI since then along with mammograms, and my markers have stayed well in the normal range... but I don't believe in the "wait for symptoms" theory, partly because it is so hard to judge whether a symptom is meaningful or not. Right now I have a "symptom" I am watching, a sore left lateral rib area (I am a left lumpectomee)... and over time I have had brief pressure-like pains just inside the skull that I never had before diagnosis. I truly don't know whether to blame those pains on the sudden huge lack of estrogen to the brain due to past chemotherapy or not. My personal theory on recurrence for HER2+++'s is that most of us eventually do recur. I believe Barbara is living evidence. Data on HER2+++'s hasn't been collected ,long enough and what they do have hasn't been accurate enough. And since I am now stuck in the group who can't have Herceptin until I do recur, I would like to have your opinion. Thanks A.A.