HER2 Support Group Forums - View Single Post - Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

dchips1 · 06-10-2012, 06:10 PM

my 6 week thoracic mri after 20 rounds of rads, showed slight reduction to my lesions. hurry up and wait for 7 more weeks for next Mri. Still on Tykerb 750mg and weekly Herceptin, tumor markers are good. i have never had any CSF samples for cells? These 2 different lesions are pretty much inoperable.It is kinda crazy that her2 + can wiggle around inside the spinal cord so crazy.

Very interested in possible treatment using Intrathecal herceptin if the radiation doesn't kill it all the way to NED!!

Barrows neurosurgeon will place omaya, but not to sure about the Herceptin use? is it the same Herceptin vials that you get IV, but use different diluent?

Can you still wear an ATV Helmet with the omaya reservoir in place? My anniversay present

Prayers and Love To all Of our warriors and Cargivers

Darita
Arizona

06-10-2012, 06:10 PM	#20
dchips1 Senior Member Join Date: May 2006 Location: Mesa, Az Posts: 219	Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease my 6 week thoracic mri after 20 rounds of rads, showed slight reduction to my lesions. hurry up and wait for 7 more weeks for next Mri. Still on Tykerb 750mg and weekly Herceptin, tumor markers are good. i have never had any CSF samples for cells? These 2 different lesions are pretty much inoperable.It is kinda crazy that her2 + can wiggle around inside the spinal cord so crazy. Very interested in possible treatment using Intrathecal herceptin if the radiation doesn't kill it all the way to NED!! Barrows neurosurgeon will place omaya, but not to sure about the Herceptin use? is it the same Herceptin vials that you get IV, but use different diluent? Can you still wear an ATV Helmet with the omaya reservoir in place? My anniversay present Prayers and Love To all Of our warriors and Cargivers Darita Arizona __________________ dx 1/06 IDC 2cm 38 at dx 2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis 3/06-9/06Taxol/Carbo/zometa/Herceptin 3/07 6 brain mets WBR down to c-2 4/07 osteonecrosis jaw 1/08 mri new 9mm lesion right lower side 2/08 gamma knife 1 lesion 11/08 regamma 10/09 latent rad necrosis to brain met, 1/20/10 crani: lesion necrosis w active cells continue her add tykerb 1/11 NED just Ingrown toenail! YEAH GOD 8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans oct -march 11 new neuro deficits lower legs 3/12 2 spinal metsTykerb, Herceptin 04/12 4050cGY rads T 2-4 & T7-9 5/12 Brain,cervical lumbar clear/thoracic slight decrease 10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly. 9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec. last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative. 10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney! 12/13 Mri brain no new lesions, cervical and lumbar arthritis. Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain 1/29/14 HIHO HIHO its off to Neuro surgery I go Life is Good when you wake up in the morning and take a breath and know that God has given me another day.