HER2 Support Group Forums - View Single Post - How Are You Doing On T-DM1?

hutchibk · 04-25-2011, 09:06 AM

I have had two treatments. So far, so good. The things to keep an eye on are 1. LVEF 2. Liver enzymes 3. platelets. Those are the areas of the body that it can really ping on. I know my platelets are taking a hit, I suddenly experience bruising if the wind blows too hard ; ). My liver enzymes are good currently. I do have to exercise, take lisinopril, coQ10, and omega 3s diligently to keep my LVEF/heart strong... as I have been on Herceptin for 5 years leading up to this.

Other than that, so far I just get REALLY fatigued, really easy. But I can tolerate that. The key is recognizing your "down days" (feel achy and fluey) and respect them. Stay in bed and REST. The remaining days in the cycle are much easier if you respect those initial down days. Mine seem to be on day 4 and day 7, so far.

Are you trying to access it through Emilia or Marianne trial? Or compassionate use/EAP? Here's the link to the EAP and locations... http://www.clinicaltrials.gov/ct2/show/NCT01120561

I travel to Denver (from Texas) every 3 weeks to get treatment. I fly in and out the same day. My pretesting was brain MRI, CT, Muga/ECHO. Read the link above to see if you meet the enrollment qualifications. The trial enrollment qualifications for Emilia and Marianne are different from the EAP link that I posted above.

04-25-2011, 09:06 AM	#3
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Re: How Are You Doing On T-DM1? I have had two treatments. So far, so good. The things to keep an eye on are 1. LVEF 2. Liver enzymes 3. platelets. Those are the areas of the body that it can really ping on. I know my platelets are taking a hit, I suddenly experience bruising if the wind blows too hard ; ). My liver enzymes are good currently. I do have to exercise, take lisinopril, coQ10, and omega 3s diligently to keep my LVEF/heart strong... as I have been on Herceptin for 5 years leading up to this. Other than that, so far I just get REALLY fatigued, really easy. But I can tolerate that. The key is recognizing your "down days" (feel achy and fluey) and respect them. Stay in bed and REST. The remaining days in the cycle are much easier if you respect those initial down days. Mine seem to be on day 4 and day 7, so far. Are you trying to access it through Emilia or Marianne trial? Or compassionate use/EAP? Here's the link to the EAP and locations... http://www.clinicaltrials.gov/ct2/show/NCT01120561 I travel to Denver (from Texas) every 3 weeks to get treatment. I fly in and out the same day. My pretesting was brain MRI, CT, Muga/ECHO. Read the link above to see if you meet the enrollment qualifications. The trial enrollment qualifications for Emilia and Marianne are different from the EAP link that I posted above. __________________ 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; 04-25-2011 at 09:10 AM..