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

Darita,
Prayers going up for some relief for you! I think of you often, as you blaze this trail. I hope IT Herceptin is exactly what you need to kill this beast once and for all!

Did the doc who placed the reservoir have any advice about pain management or its duration. I don't think any kind of pain is "normal" or okay...until I check it out with someone. Too often, we Mom-types just grit our teeth and muddle through...when we should have said something.

All the best to you! Keep us posted!
Denise

__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert

03-07-2013, 05:44 AM	#57
NEDenise Senior Member Join Date: Aug 2011 Location: Philly Suburbs Posts: 1,709	Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease Darita, Prayers going up for some relief for you! I think of you often, as you blaze this trail. I hope IT Herceptin is exactly what you need to kill this beast once and for all! Did the doc who placed the reservoir have any advice about pain management or its duration. I don't think any kind of pain is "normal" or okay...until I check it out with someone. Too often, we Mom-types just grit our teeth and muddle through...when we should have said something. All the best to you! Keep us posted! Denise __________________ 1/11-needle biopsy 2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes 3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH! 4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks 8/26/11 finished Taxol!!! 10/7/11 mastectomy/DIEP recon 11/11 radiation x28 1/12/12 1st CANCER-VERSARY! 1/12 Low EF/Herceptin "Holiday" :( 2/12 EF up - Back on Herceptin, heart meds 4/2/1212 surgery to repair separated incision from DIEP recon 6/8/12 Return to work :) 6/17/12 Fall, shatter wrist,surgery to repair/insert plate :( 7/10/12 last Herceptin 7/23/12 Brain Mets %$&#! 3cm and 1cm 8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb 8/23/12 Back to work 12/20/12 Injure back-3 weeks in wheel chair 1/12/13 2nd CANCER-VERSARY! 1/14/13 herniate disk in back - surgery to repair 1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm 5/3/13 Start Avastin to shrink necrosis 5/10/13 begin weaning steroids 6/18/13 Brain MRI - Avastin seems to be working! 6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear! 7/5/13 finally off steroids!! 7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin! 7/13/13 Symptoms return - back on steroids 7/26/13 Back on Avastin - try again! 8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :) 9/9/13 Brain MRI - fingers crossed “ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert