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03-09-2013, 02:30 PM
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#61
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Senior Member
Join Date: Jul 2008
Posts: 186
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Ev,
It's all so difficult, too difficult. Wonder if Genentech could be of any assistance, maybe make either drug available for compassionate use. Anything to help turn the tide.
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03-10-2013, 04:57 PM
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#62
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
I have been traveling and doing appointments and home for a short time. Meanwhile other family members have been busy researching for answers.
It seems that methotrexate given parenterally through her vein port and the depocyt through her ommaya could possible bring good results. They seem a good combo for irradiating tumors in the spine. It claims methotrexate clears the spine better given intraveneously than intrathecally to remove the growths when given in combination with the depocyt.
So maybe we try that next. Will run it by the doctor.
This is the info on mtx
Numerous reports suggest that systemic therapy improves survival for patients with LM.72,93- 100Some authors feel systemic therapy is the most important part of the treatment of LM73- 74and exclude intrathecal therapy in patients with responsive cancers.94- 95,97,101Agents capable of producing adequate CSF concentrations following systemic administration may benefit patients with LM.
Methotrexate.Methotrexate inhibits dihydrofolate reductase and the synthesis of purine nucleotides and thymidylate, interfering with DNA synthesis and repair. At high doses, methotrexate has favorable CSF penetration. A prospective, nonrandomized study comparing intrathecal methotrexate (n = 15) vs high-dose systemic methotrexate (n = 16) in patients with LM produced provocative results. High-dose methotrexate (8 g/m2over 4 hours) resulted in a mean peak concentration of 17.1 μmol/L in the CSF; cytotoxic CSF methotrexate levels remained measurable much longer than with intrathecal dosing. Furthermore, there was higher CSF tumor cell clearance and survival was longer (13.8 months vs 2.3 months, P = .003) in the systemic methotrexate-treated cohort.102Because of the favorable pharmacokinetics of high-dose methotrexate, further studies in patients with LM are warranted, possibly in combination with other agents.
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03-11-2013, 12:06 AM
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#63
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
__________________
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
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03-11-2013, 04:51 AM
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#64
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Ev,
No new advice...just wanted you to know that I'm thinking of you and Susan...and praying for strength, continued love, and a quick reversal of all those symptoms!
Just for the record...I pray for a CURE everyday...and Susan's name is in the litany...believe me!
With love,
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
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03-14-2013, 06:10 AM
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#65
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Member
Join Date: May 2012
Posts: 14
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Im really flipping out. The doctors more or less yesterday said that my wife is about to die. They more or less said they are throwing the kitchen at the cancer. Her brain is building up fluid and were gonna hopefully have a solution for that today so that we can start intrathecal herceptin. along with that they want to give pretuzamed which is a large molecule. They think the brain barrier could be down because of the disease. They also said that the cancer is resilient to radiation and has now becoming resilient to chemo's The first thing we need to do is take care of the fluid backing up so that she can get intrathecal. The second question is im looking for a list of small molecule chemo's I can find one I always end up with the biologics. Im flipping my lid and cant imagine what life is without my wife and how my 3 little girls are gonna handle this.
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03-14-2013, 06:34 AM
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#66
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Senior Member
Join Date: Jan 2012
Posts: 362
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
I am so sorry to read your post. I am going to pray for your wife and your three little girls. I am so sorry you and your family are going through this. I pray that they are able to drain the fluid and give her the IT Herceptin.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.
www.mychemobag.org
www.facebook.com/mychemobag
8 YEARS NED
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03-14-2013, 06:46 AM
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#67
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Peter, IT herceptin will work, but you need steroids to clear the fluid immediately. My wife was in a similar situation last year in April, but now she is nearly clear.
Hope you succeed. Praying for you
Mario
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03-14-2013, 09:11 AM
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#68
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Senior Member
Join Date: Jul 2008
Posts: 186
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
One can only imagine that organizations like NCI or NIH would provide critical information such as contents provided in prior post to oncologists which are, by their own admission, at road's end. Before throwing in the towel, any KNOWN procedure, even ones that only have remotest chance of working, MUST be attempted. All man-made laws and legalities become pretty insignificant when facing death.
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