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05-13-2012, 11:42 AM
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#1
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
My wife, Nina, was found to have Leptomeningeal Disease in the spine with too many spots to count and three active leasions in the brain Dec 15, 2011. With hard work by many people, she had ten rads of her back and spine, and started weekly 40 mg Intrathecal (IT) Herceptin on 1/12/12. 2/3/12 the dose was increased to 80 mg and 0.4 mg topotecan twice per week. IV Herceptin was added with Navelbine. Not many people thought she would be alive at the end of February. Here it is middle of May 2012 and she is celebrating Mother's Day after her mother's birthday last week. She is down to Topotecan once per week, and we are looking at getting down to Topotecan once every two weeks, as well as the IT Herceptin. The IV Herceptin and IV Naavelbine we are looking at also once every two weeks. Insurance coverage has been good from anthem Blue Cross Blue Shield, MD Anderson has been supportive of patient suggestions, and Genentech has offered to help with putting the treatment plan into more clinical trials. I hope that everyone that is having brain mets can get this information and maybe get similar results. By the way, she has been driving, walking five miles per day, Yoga, Kindle, computer searching, and looks great since the initial diagnosis. She has tightness in the lower back to the knees that we are working on. Inspiration of others is the best way to feel good about yourself.
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05-14-2012, 12:48 PM
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#2
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
I am so glad she is doing so well! where is she being treated, did she have an ommaya reservoir implanted?
Praying for my Mri in 2 weeks to look good with my 2 mets to be gone as well.
Darita
__________________
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.
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05-14-2012, 12:56 PM
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#3
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Darita,
YOur progression is very similar to Nina's! She is being treated at MD Anderson in Houston Texas. I heard UCLA might also be treating patients with IT Herceptin. She is using an ommaya reservoir. We are trying to get the topotecan reduced because I heard that only Herceptin will not cause meningitis long term. Good luck to you. MRI for brain and spine 5/30.
Paul
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05-15-2012, 10:37 AM
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#4
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Hello RP -
You and your Nina have an amazing story. She is a true success to keep beating back her prognosis.
This is the support group where your story is so very much appreciated. Over the years we have had a few members try the intrathecal method and a couple of the first patients were over 8 years ago right on the forefront of that treatment.
Now there are new and better drugs to insert. Nina is proof of that!
Please keep us updated on the reduction of her treating drugs and how Nina is doing generally.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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05-15-2012, 12:34 PM
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#5
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Nina gets down at times, but is now looking to go back to giving therapeutic massages or being a clinic RN. The IT Herceptin with Methotrexate was a good first thought, but the darn stuff irritated the brain surface and caused some problems. One of the contacts on this site had her daughter have an issue with insurance that got my attention and the doctor transitioned to the topotecan as that had previously been run at MD Anderson with okay results. Piggybacking the two together was the secret. I wish it had been done five years ago and saved hundreds, if not thousands, of lives. We keep spreading the information to help others. Nina is getting ready for her 53rd birthday in July and just spent Mother's Day in Washington DC with our son.
Success is not measured by the number of steps you take to your target, but by the number of ones that are past your target. We left the target from the initial assessment from Xmas 2011 back three months ago, and we are not going to look over our shoulders again.
Paul and Nina
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05-15-2012, 11:29 PM
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#6
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Member
Join Date: Apr 2012
Location: I live in a small town (pop7,000) in rural Spain. I've been living in Spain since 1970.
Posts: 7
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Dear Paul and Nina, delighted to hear your story! Gives me hope. I've asked for a second opinion at MDAnderson, Madrid.
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05-16-2012, 07:06 AM
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#7
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Potra,
Have them contact the main center in Houston Texas. Dr. Loghin is the neurooncologist and Dr. Melhem-Bertrandt is the breast oncologist. This was a compassionate care treatment, but I think they want to get a full study going. There are a tremendous number of patients and it was noted in 2007 that this was going to occur with Herceptin and brain involvement. 30% of all HER patients have your situation, and in the past there was not a good method to treat it. This appears to work for a couple of patients, now it is time for more women to be treated with this. It is not inexpensive, but it has a good chance of working based on the results I have seen with Nina and with others that are not in major publications. I hope this is a road map for many more patients that are on this blog.
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05-16-2012, 09:24 PM
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#8
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Member
Join Date: Apr 2012
Location: I live in a small town (pop7,000) in rural Spain. I've been living in Spain since 1970.
Posts: 7
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
thank you very much Paul, I have a consultation with them -next week-I'll let you know how it goes. I knew about the stats for Her2 patients and was "prepared"-also I'm a vet so it's not as scary as it might be for others, makes me very proactive-something they aren't used to here.
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05-17-2012, 12:19 PM
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#9
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Porta,
Good luck next week. We are at MD andsrson Houston. Nina is only one in this regimen. Keep pushing as she is doing really well. Monitor spinal prptein and glucose for dffectivendss. Mlre Monday when I am back in Raldigh.
Paul
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05-17-2012, 12:36 PM
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#10
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Member
Join Date: Apr 2012
Location: I live in a small town (pop7,000) in rural Spain. I've been living in Spain since 1970.
Posts: 7
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Can't thank you enough...my love to nina, Miriam
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05-19-2012, 02:11 PM
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#11
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Member
Join Date: May 2012
Posts: 14
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Paul did nina have breast cancer that metastasized ?
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05-19-2012, 04:49 PM
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#12
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Hot off the "press"
Reading the abstracts for the upcoming ASCO annual meeting I found this:
2015 Poster Discussion Session (Board #3), Fri, 1:00 PM-5:00 PM and 4:30 PM-5:30 PM
Intraventricular (IVe) topotecan for women with neoplastic meningitis (NM) asso- ciated with responsive malignancies.
Kurt A. Jaeckle, S. Keith Anderson, Anna Willson, Gerardo Colon-Otero, Tejal Amar Patel, Edith A. Perez; Mayo Clinic, Jacksonville, FL; Mayo Clinic, Rochester, MN; Memorial Healthcare Systems, Hollywood, FL
Background: A prior study of intra-CSF topotecan (TOPO) for unselected pts w/ NM reported PFS 6 mo of 19%, and OS of 15 wks (Groves, NeuroOncol 2008;10:208). We postulated that greater activity might occur in pts w/ malignancies considered sensitive to topoisomerase inhibitors. Methods: We reviewed outcome of women with NM and adenocarcinoma of the breast, ovary or lung receiving IVe TOPO (0.4 mg 2x/wk x 4wk, Q wk x 4, Q 2wk x 2, Q mo x 3, Q 2mo x 3, and Q 3mo x 4) until progression (PROG) or adverse events (AE). All had baseline CSF cytology, and MRI of brain and spine. CSF cytology was obtained at each treatment (Rx), and brain/spine MRI Q 3mo. Neuro-specific PROG was defined as recurrent CSF cytology; PROG of NM on MRI; all-cause neurologic worsening; pt refusal; or death. PFS/OS were measured from 1st TOPO Rx. All pts signed consent; the study was IRB approved. Results: 17 women (breast -12; lung-3; ovary - 2) were treated via Ommaya reservoirs; 7 (41%) had VP shunts w/ valves, adjusted for Rx. Median (med) age was 53 (41-79), and KPS 70 (50-90). At presentation, 11(65%) had CSF cytology and 14 (82%) had NM on MRI [brain-11 (65%); spine-10 (59%)]. 15 (88%) had no prior intrathecal Rx. 13 pts (76%) received focal RT for CNS disease, and 8 (47%), chemotherapy for extracranial disease. Med.number of Rx were 13/pt (range, 3-50); med. duration of TOPO Rx was 14 wks (range, 1-109). Med. neuro-specific PFS was 13 wks; PFS6 was 41%, and PFS12, 29 %. Med. OS was 33 wks (range, 5-180), w/ 4 alive at 13, 30, 33, and 180 wks. 4 pts (24%) lived 95 wks. Of 11 w/ baseline CSF cytology, 7 (64%) cleared CSF of malignant cells (med. duration clear 47 wk (range, 9-104). AE included arachnoiditis (18%), leukoencephalopathy (18%), and Ommaya infections (12%). Rx was stopped for neuro PROG (29%); systemic PROG (23%); refusal (18%); AE (12%); or persistent negative CSF (6%); 12% are still on Rx. Conclusions: Promising activity of IVe TOPO was observed in women with NM from breast, lung and ovarian cancer. PFS 6 and 12, OS and cytologic response were twice that noted in prior studies of NM pts w/ unselected malignancies. This data supports our plan for a phase II study targeting this select cohort.
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05-19-2012, 05:00 PM
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#13
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
another pertinent ABSTRACT:
2052 General Poster Session (Board #13G), Sat, 1:15 PM-5:15 PM
Concurrent intrathecal methotrexate and liposomal cytarabine for the treatment of leptomeningeal metastasis from solid tumors.
Brian J. Scott, Homira Feely, Tiffany Brown, Vincent Van Vugt, Ryan Kim, Paul Timothy Fanta, Lyudmila Bazhenova, Santosh Kesari; University of California, San Francisco, San Francisco, CA; University of California, San Diego, La Jolla, CA; University of California, San Diego Moores Cancer Center, La Jolla, CA
Background: Leptomeningeal metastasis (LM) from solid tumors is typically a late manifestation of disease with a median survival of weeks to a few months. Treatment is palliative, with no widely accepted standard of care. Options include intrathecal (IT) or systemic chemotherapy, radiation therapy or ventriculoperitoneal shunting. Randomized trials comparing single agent IT methotrexate to liposomal cytarabine have shown similar efficacy and tolerability. There is limited data, however, on the use of combination IT chemotherapy in solid tumor LM. Methods: We conducted a retrospective cohort study of 19 subjects treated for LM from solid tumors at a single institution. In addition to therapies directed at active solid tumor sites, each subject received IT liposomal cytarabine plus IT methotrexate injections every two weeks. Survival data and treatment-related toxicities were determined by systematic chart review. Results: LM was diagnosed by CSF cytology in 12/19 (63%), while the remainder were diagnosed by clinical and MRI findings. The most common cancer types were breast 7(37%), glioblastoma 6(32%) and lung 3(16%). The majority 18(95%) had active systemic or parenchymal brain disease at the time of treatment, requiring systemic chemotherapy 18(95%) or radiation therapy 13(68%). The median number of IT treatments was 4(range 1-9). Treatment was interrupted due to toxicity in 3(17%), while 7(37%) experienced CTCAE grade III toxicities, most commonly meningitis 3(16%). Treatment was stopped in 7/19(37%) following complete cytologic response 6/11(55%) or radiographic clearance 1/7(14%). The median overall survival was 96 days(n6; range 29-158), median time to neurologic progression was 46 days (n9; range 6-101) and the most common cause of death was progression of systemic disease 4(67%). Conclusions: Combination IT chemotherapy was reasonably well-tolerated, even in a population also receiving chemotherapy for progressive systemic disease. IT-related adverse events occurred at rates similar to previously reported single agent trials. Prospective evaluation is necessary to determine whether there is a survival benefit compared to single agent IT chemotherapy.
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05-19-2012, 05:08 PM
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#14
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
and another:
2070 General Poster Session (Board #16A), Sat, 1:15 PM-5:15 PM
Prospective follow-up of a cohort of 112 patients with leptomeningeal metastases of breast cancer recruited from 2007 to 2011: Prognostic factors.
Fahed Zairi, Nuria Kotecki, Isabelle Rodrigues, Marie-Christine Baranzelli, Charles Andre, François Dubois, Patrick Devos, Matthieu Faivre-Pierret, Richard Assaker, Jacques Bonneterre, Emilie Le Rhun; CHRU, Lille, France; Centre Oscar Lambret, Lille, France; Université Lille Nord de France, Lille, France; Centre Oscar Lambret - Université Lille Nord de France, Lille, France
Background: Around 5% of patients with breast cancers (BC) will develop leptomeningeal metastasis (LM). The incidence may increase. Methods: We reported the description and outcome of 112 consecutive BC patients diagnosed with LM in our institution from 2007 to 2011. Correlations between characteristics and overall survival (OS) were analyzed using usual statistical methods (Kaplan Meier, Log-rank, Cox model). Results: BC were invasive ductal carcinoma in 69.7%. Estrogen and progesterone receptors were detected in respectively 61.6 and 44.6%. HER2 expression was observed in 26%. 23% were triple negative. Median time between BC diagnosis and LM diagnosis was 44 months. At LM diagnosis, median age was 54 and median Performance Status (PS) was 2. CSF cytology and cerebrospinal MRI were positive in respectively 72,5% and 87%. 103 (92%) LM patients received IT liposomal cytarabine as 1st line of treatment (ventricular device in 47%). IT therapy could be associated with systemic treatment in 58% of the cases and cerebral radiotherapy for LM in 14% of the cases. Clinical response after 1st line treatment was observed in 57%, CSF response in 30,5%, MRI response in 62,5%. 24 patients received a 2nd line of IT thiotepa, 6 a 3rd line of IT methotrexate. The more significant prognostic factors (p0,0001) were initial PS, associated systemic treatment and triple negative BC status. Other significant predictors of OS were thiotepa as 2nd line treatment (p0,0004), intracranial hypertension at LM diagnosis (p0,019), associated cerebral radiotherapy (p0,02), progesterone receptor status (p0,04). Median OS of the 103 treated patients was 3,8 months (4,75 months for 0-2 PS and 1,6 months for 3-4 PS patients). Conclusions: Median OS was consistent those of other recent cohorts of BC LM. Our results confirm the role of a very early diagnosis, before the degradation of the general status. The association with systemic treatment or cerebral radiotherapy is indicated when possible.
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05-20-2012, 12:09 PM
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#15
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Alexandra1
Yes. Nina's was a left breast of 6.0 cm with 4 out 20 lymph nodes positive.
The 5% LMD is going to go up because of the Herceptin being able to get most everything other than brain and spine. If other areas than the cancer in the LMD was never noted, but it is estimated it would have been found in most of the patients (source not able to be cited for fear of being terminated.) We need to get positive results and get them now. The info from ASCO is great. I will start looking at this from a pharm guys viewpoint.
Paul
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06-04-2012, 03:08 PM
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#16
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
To all, there is hope with brain mets. Nina's MRIs show only normal background in the brain and spine. The PET scan came back as normal. The tumor markers are down to the normal population. There are no abnormal cells seen in the Lumbar Puncture or a vein draw. Treatment is going to nce every two weeks for the Intrathecal (and we hope the IV). TDM-1 works, but only if there is not Central Nervous System involvement. This approach will be investigated for those individuals with brain and spine mets from Herceptin based disease. We cannot thank the doctors at MD Anderson enough.
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06-06-2012, 11:57 AM
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#17
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Junior Member
Join Date: Nov 2006
Location: Miami, FL
Posts: 4
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Just got dx with lepto. I want the intrathecal Herceptin trial. Anyone with any info to expedite getting into this trial PLEASE help. I am terrified. Anyone been through this I'd love to talk.
Thank you very much
Lisa. (calisa is just an onscreen name)
__________________
Dx in 1998 - 27 yrs old
Triple positive
1.1 cm tumor with DCIS. Mastectomy ACT followed by Tamoxifen
Recurred 2000 to lymph nodes in axilla and bones
Rads- more chemo plus one year of Herceptin
Recurred to more bones- lots of rads to bones
32 or more different chemo combos since 2001
Found to be ER-/PR-
Brain met 2007- 5 more to follow all treated with gamma knife latest one 3 cm on brain stem treated April 25
5/1/12 irinotecan,tykerb,Herceptin,xgeva
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06-10-2012, 06:42 AM
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#18
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
We are doing it and rolepaul is doing it too.
Chicago are recruiting now, 10mg twice a week.
France trial are recruiting now 30mg per week.
But maybe you can get a better trial through your oncologist if you convince him. If you need more details message me or rolepaul who is more of an expert. Good luck
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06-10-2012, 07:53 AM
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#19
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Lani,
So the clinical trial shows an overall survival of 3.8 months on average. That is unacceptable! Intrathecal Herceptin has been shown to eliminate the detectable presence of Leptomeningeal disease in almost every case that has been noted in literature or on the internet if at least 50 mg per week is used. I was contacted by one gentleman whose wife died, but of liver or pancreatic cancer a few months after treatment. Most of the other patients are still alive, or passed away from other causes years after the treatment. It took four solid days of work to get all the information about this treatment method for Nina and getting treatment started was extremely difficult due to politics of not having the number of cases out there to make the doctors comfortable initially.
Dr. Raizer is struggling to get women for treatment. That is what is even more frustrating. The studies at Northwestern and in France are not well advertised, without the completion of the trial there is no documentation of positive results, without positive results there is no knowledge in the community or health industry to inform doctors and patients. Dr. Razier's study is to determine the amount of Intrathecal Herceptin that is tolerable. There are already 12 patients that have 50 mg or more per week. I would have thought that it would have been higher dosages than the 10 mg twice weekly or 20 mg twice weekly lower dosages.
Nina is already down to once per two week treatment with NED in the brain, spine, or anywhere else, Mario's wife has already started treatment, Lisa looks like she should get her treatment started within ten days, and there are other contacts I am working with to get this done through compassionate care if they can't get into the Northwestern trial. If there are the numbers of patients with Lepto disease as it sounds like, there are too many for this trial. There is talk of MD Anderson personnel getting a large scale trial started, but the provider of Herceptin, Genentech, has some reservations about providing funding for a large study. They need to have some "push" to get this concept going. I am pushing NCI, NIH, ACS, Susan B Komen, and anybody else I can to get some help for a trial.
Let me know what we need to do from your thoughts.
Mario's wife Carol is now at 50 mg per weekly dose. MRIs in three weeks to show progress. I feel like I am a one man army, but getting recruits as people find out about how to fight this war on Lepto involvemenr with HER+.
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06-10-2012, 06:10 PM
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#20
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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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.
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