HER2 Support Group Forums - View Single Post - Ideas? Put your propellers on

hutchibk · 09-03-2008, 03:47 PM

A very dear friend of mine is having progression. All of her mets are in the bones. They can't get anything to hold her for more than a few months at a time.

She has been on Abraxane/Avastin for the last 3 months. She has already been on Herceptin, Xeloda, Tykerb, and all the other normal regimines that we have all had.

(I don't know if they have tried zometa, navelbine or gemzar...)

Herceptin and Tykerb together gained her very little, and was hard on her heart.

Her doc decided today - no more Avastin. She is on oxycontin for bone pain (has been on it for over a year), she is in a wheelchair much of the time because some of her bone mets has been in hip bones, and caused hip breakage about 3-4 years ago. She had surgery/hip replacement w/ pins, but that hip has continued to be weak. She has constant and fairly debilitating fatigue and nausea.

Her hubby tells me that mentally she is exhausted... and not terribly inclined to keep looking for options, but when I saw her today, she was interested in me asking my friends here about ideas.

We are close enough that she can go to Houston - to MDA, which she has been to in the past; or to Baylor College Breast Center (Dr. Kent Osborne and associates).

Chrisy - based on your experience, could she possibly qualify for the trial you are on? Do you know where in Texas it is open? I forget what it's real name is - as I call it Run DMC...

Thanks everybody!

Brenda

09-03-2008, 03:47 PM	#1
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Ideas? Put your propellers on - (Chrisy I need you) A very dear friend of mine is having progression. All of her mets are in the bones. They can't get anything to hold her for more than a few months at a time. She has been on Abraxane/Avastin for the last 3 months. She has already been on Herceptin, Xeloda, Tykerb, and all the other normal regimines that we have all had. (I don't know if they have tried zometa, navelbine or gemzar...) Herceptin and Tykerb together gained her very little, and was hard on her heart. Her doc decided today - no more Avastin. She is on oxycontin for bone pain (has been on it for over a year), she is in a wheelchair much of the time because some of her bone mets has been in hip bones, and caused hip breakage about 3-4 years ago. She had surgery/hip replacement w/ pins, but that hip has continued to be weak. She has constant and fairly debilitating fatigue and nausea. Her hubby tells me that mentally she is exhausted... and not terribly inclined to keep looking for options, but when I saw her today, she was interested in me asking my friends here about ideas. We are close enough that she can go to Houston - to MDA, which she has been to in the past; or to Baylor College Breast Center (Dr. Kent Osborne and associates). Chrisy - based on your experience, could she possibly qualify for the trial you are on? Do you know where in Texas it is open? I forget what it's real name is - as I call it Run DMC... Thanks everybody! Brenda __________________ 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."