HER2 Support Group Forums - View Single Post - looking for Gamma, Cyber or Proton propeller-heads

hutchibk · 07-17-2008, 06:38 AM

Hi all - I know this was a cryptic post, just doing my research in advance of an appt with my rads onc yesterday.

We saw some activity on my recent MRI, but it turns out that it is not new activity at all. Or at least not new spots. This is awesome news. We have seen a tiny bit of increased enhancement of my original brain spots, and one increase by 1mm, but then when he and I sat with the actual scans on the computer and went back through and compared 5 different MRIs over the year starting last April to last week, we noticed that they phase in and out of a little more enhanced, a little less enhanced, a touch more enhanced, a bit less enhanced, etc, etc... (like they wake up and go back to sleep a little every few months but remain stable) and armed with that comparison information, we are not at all worried like we were when we thought they might be new spots. It seems that the Tykerb/Xeloda is still doing it's job keeping them stable. Just to be prudent, though, we are going to do a CT of the torso and MRI of my rt illiac wing bone spot on Friday just to be sure that nothing new is showing up in the body, and we will MRI my melon every 6 weeks for a few cycles just to be sure that our theory holds true. If anything changes or increases at all, then we will do 5 fractions of SRT on each spot and zap them away...

07-17-2008, 06:38 AM	#5
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Hi all - I know this was a cryptic post, just doing my research in advance of an appt with my rads onc yesterday. We saw some activity on my recent MRI, but it turns out that it is not new activity at all. Or at least not new spots. This is awesome news. We have seen a tiny bit of increased enhancement of my original brain spots, and one increase by 1mm, but then when he and I sat with the actual scans on the computer and went back through and compared 5 different MRIs over the year starting last April to last week, we noticed that they phase in and out of a little more enhanced, a little less enhanced, a touch more enhanced, a bit less enhanced, etc, etc... (like they wake up and go back to sleep a little every few months but remain stable) and armed with that comparison information, we are not at all worried like we were when we thought they might be new spots. It seems that the Tykerb/Xeloda is still doing it's job keeping them stable. Just to be prudent, though, we are going to do a CT of the torso and MRI of my rt illiac wing bone spot on Friday just to be sure that nothing new is showing up in the body, and we will MRI my melon every 6 weeks for a few cycles just to be sure that our theory holds true. If anything changes or increases at all, then we will do 5 fractions of SRT on each spot and zap them away... __________________ Brenda NOV 2012 - 9 yr anniversary JULY 2012 - 7 yr anniversary stage IV (of 50...) Nov'03~ dX stage 2B Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo. Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin Feb'07~ Genetic testing, BRCA 1&2 neg Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin May'07~ Started Tykerb/Xeloda, no WBR for now June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic! Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2 Oct'07~ PET/CT & MRI show NED Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone) Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors. Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen. Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen. June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen. Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice. Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots. Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011. Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah. "I would rather be anecdotally alive than statistically dead." Last edited by hutchibk; 07-17-2008 at 02:33 PM..