HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 07-21-2013, 12:32 PM   #1
evlin75
Senior Member
 
Join Date: Sep 2007
Posts: 118
leptomeningeal treatment with herceptin IT

My daughter Susan is still being treated with Herceptin IT. Her new ommaya is working without problems. Obtaining some stability of the spinal growths using DepoCyt with the Herceptin. Also using Emend to alleviate some of the side effects. She is getting the recommended high dose of the Herceptin but there is no great reduction of the spine mets, although the spots on the cerebellum are now gone.
Any update from you guys - Marvass and Rolepaul? I wish Nina and Carol the best!

Ev
evlin75 is offline   Reply With Quote
Old 07-21-2013, 06:46 PM   #2
NEDenise
Senior Member
 
NEDenise's Avatar
 
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
Re: leptomeningeal treatment with herceptin IT

Ev
It sounds like things are going well!
All the best to you, and Susan!
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
NEDenise is offline   Reply With Quote
Old 07-22-2013, 04:18 AM   #3
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: leptomeningeal treatment with herceptin IT

Ev,

What wonderful news! Thanks for the update of your daughter Susan. We will pray for continued success of her treatment.

Marvass has updated the status of Carol on her thread http://her2support.org/vbulletin/sho...hlight=marvass

and Rolepaul has posted the update of Nina on his thread here: http://her2support.org/vbulletin/showthread.php?t=57973
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 07-22-2013 at 04:23 AM..
Jackie07 is offline   Reply With Quote
Old 07-22-2013, 08:24 AM   #4
evlin75
Senior Member
 
Join Date: Sep 2007
Posts: 118
Re: leptomeningeal treatment with herceptin IT

Thanks for the well wishes and links! Susan was diagnosed in July of 2012 so the good news for us is that she is still walking and talking.

Leptomeningeal problems are not easy to handle. The Depocyt has run its course and will be stopped. Then the high dose Herceptin IT continued. She has a couple enlarged hot lymph nodes in her neck that need radiated. She has had some unsteadiness, fell a couple times but is getting physical therapy to help with that.

But anyway - thanks for responding.
Ev-mom of Susan
evlin75 is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 06:22 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter