HER2 Support Group Forums - View Single Post - TDM-1 side effects

hutchibk · 07-28-2011, 05:13 PM

As Lani said, Traztuzumab (Herceptin) is not known to cross the BBB because of the size of molecule that it is, but theories suggest that it might once the BBB has been rendered "leaky or compromised" either by tumor or other treatments. TDM1 is Herceptin that incorporates a chemo into the molecule, that's what the T is in the name, Traztuzumab.

I am doing really well on TDM1 as well, but I also get 3 mo. brain MRIs along w/ 3 mo CT scans, and when called for, PET scans, so that I know what is going on in my whole body. My imaging center follows all new guidelines that have recently recommended significant radiation reduction of CTs. Whole body MRI is not known to reveal tumors in the torso as CT or PET/CT do. MRI's strength is in revealing (and providing measurement of) tumors in specific areas such as the brain, a breast, an organ, etc. It is not a whole body tool.

Currently, our brains are "unprotected" from getting brains mets. There are treatments that treat brain mets (targeted radiation methods, whole brain radiation methods. or chemos that cross the BBB... such as Tykerb, carboplatin, etc) but no protection from getting mets in our brains. The best protection is thorough and regular scanning to catch anything that shows up when it is early and small.

07-28-2011, 05:13 PM	#12
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Re: TDM-1 side effects As Lani said, Traztuzumab (Herceptin) is not known to cross the BBB because of the size of molecule that it is, but theories suggest that it might once the BBB has been rendered "leaky or compromised" either by tumor or other treatments. TDM1 is Herceptin that incorporates a chemo into the molecule, that's what the T is in the name, Traztuzumab. I am doing really well on TDM1 as well, but I also get 3 mo. brain MRIs along w/ 3 mo CT scans, and when called for, PET scans, so that I know what is going on in my whole body. My imaging center follows all new guidelines that have recently recommended significant radiation reduction of CTs. Whole body MRI is not known to reveal tumors in the torso as CT or PET/CT do. MRI's strength is in revealing (and providing measurement of) tumors in specific areas such as the brain, a breast, an organ, etc. It is not a whole body tool. Currently, our brains are "unprotected" from getting brains mets. There are treatments that treat brain mets (targeted radiation methods, whole brain radiation methods. or chemos that cross the BBB... such as Tykerb, carboplatin, etc) but no protection from getting mets in our brains. The best protection is thorough and regular scanning to catch anything that shows up when it is early and small. __________________ 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."