HER2 Support Group Forums - View Single Post - Brain mets discussion- Please share your thoughts

NEDenise · 12-30-2012, 08:03 AM

Jessica,
My f/u MRI is on Jan 8th too! I think that's a good luck omen for both of us! I'm 4 months out from GammaKnife, and they do an MRI every other month still. Eventually, it will go to every 3 months, but my regular onc also orders CTs of the rest of me every 4 months. Lots of scans, but so far so good.

As for when and whether we HER2 warriors need MRIs...I was completely asymptomatic, but on the day of my last Herceptin infusion, I asked for a brain MRI. I told my onc that I wouldn't sleep at night unless I was sure my brain was clear before I went off into the world thinking I was NED. The MRI was scheduled for a few days later, and that evening I got the dreaded call. Not one, but TWO lesions in my brain...and not little tiny ones either...1 cm and 3cm...the larger of which was so close to my brain stem that the neurologist couldn't believe I had no symptoms. Evidently, I should have had both vision and balance symptoms related to the size and position of that lesion. It's very scary to consider what may have happened to me, if I had not insisted on that "end of treatment" MRI.

In hindsight, I wish I had insisted on being treated with Tykerb/lapatnib during the Herceptin only portion of my treatment. I wonder if that would not have protected my brain. As it is, when the cancer had nowhere else to go...it hid in my brain...which, according to two of my docs is not nearly as uncommon as insurance companies would like us to believe. The problem is...Tykerb is pricey...so they don't want to pay for it before disease is evident in the brain. I wonder how they'd feel if it were their mom, sister, wife...?

Anyway...I too digress...down from my soapbox. Jessica, I'll be thinking of you and sending prayers and love on the 8th.

Yanyan...thanks for starting this thread...knowledge is power!
Denise

12-30-2012, 08:03 AM	#8
NEDenise Senior Member Join Date: Aug 2011 Location: Philly Suburbs Posts: 1,709	Re: Brain mets discussion- Please share your thoughts Jessica, My f/u MRI is on Jan 8th too! I think that's a good luck omen for both of us! I'm 4 months out from GammaKnife, and they do an MRI every other month still. Eventually, it will go to every 3 months, but my regular onc also orders CTs of the rest of me every 4 months. Lots of scans, but so far so good. As for when and whether we HER2 warriors need MRIs...I was completely asymptomatic, but on the day of my last Herceptin infusion, I asked for a brain MRI. I told my onc that I wouldn't sleep at night unless I was sure my brain was clear before I went off into the world thinking I was NED. The MRI was scheduled for a few days later, and that evening I got the dreaded call. Not one, but TWO lesions in my brain...and not little tiny ones either...1 cm and 3cm...the larger of which was so close to my brain stem that the neurologist couldn't believe I had no symptoms. Evidently, I should have had both vision and balance symptoms related to the size and position of that lesion. It's very scary to consider what may have happened to me, if I had not insisted on that "end of treatment" MRI. In hindsight, I wish I had insisted on being treated with Tykerb/lapatnib during the Herceptin only portion of my treatment. I wonder if that would not have protected my brain. As it is, when the cancer had nowhere else to go...it hid in my brain...which, according to two of my docs is not nearly as uncommon as insurance companies would like us to believe. The problem is...Tykerb is pricey...so they don't want to pay for it before disease is evident in the brain. I wonder how they'd feel if it were their mom, sister, wife...? Anyway...I too digress...down from my soapbox. Jessica, I'll be thinking of you and sending prayers and love on the 8th. Yanyan...thanks for starting this thread...knowledge is power! Denise __________________ 1/11-needle biopsy 2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes 3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH! 4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks 8/26/11 finished Taxol!!! 10/7/11 mastectomy/DIEP recon 11/11 radiation x28 1/12/12 1st CANCER-VERSARY! 1/12 Low EF/Herceptin "Holiday" :( 2/12 EF up - Back on Herceptin, heart meds 4/2/1212 surgery to repair separated incision from DIEP recon 6/8/12 Return to work :) 6/17/12 Fall, shatter wrist,surgery to repair/insert plate :( 7/10/12 last Herceptin 7/23/12 Brain Mets %$&#! 3cm and 1cm 8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb 8/23/12 Back to work 12/20/12 Injure back-3 weeks in wheel chair 1/12/13 2nd CANCER-VERSARY! 1/14/13 herniate disk in back - surgery to repair 1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm 5/3/13 Start Avastin to shrink necrosis 5/10/13 begin weaning steroids 6/18/13 Brain MRI - Avastin seems to be working! 6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear! 7/5/13 finally off steroids!! 7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin! 7/13/13 Symptoms return - back on steroids 7/26/13 Back on Avastin - try again! 8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :) 9/9/13 Brain MRI - fingers crossed “ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert