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01-25-2013, 11:45 AM
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#1
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Junior Member
Join Date: Dec 2012
Posts: 4
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
I thank you all those who fight the good fight. As more patients are taken care of with good results, I don't understand why they are not taking other patients. I'm one of them in need of a chance
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01-25-2013, 09:23 PM
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#2
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Monica, I sent you a private message. I think compassionate coverage will become more available soon.
More physicians will be more comfortable about doing the Herceptin IT therapy.
Some day it will probably be approved for first line treatment for brain and spinal cord mets with the Her2 diagnoses.
Ev
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03-06-2013, 11:20 PM
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#3
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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
how long does the pain of the Ommaya surgery take to subside? bending over is not a good thing, neither is drinking to fast, coughing, blowing nose or messing with ears. Tommorow will be 8 days. since placement. talk about pain. hope prayers and shout outs for good scans and healing to all 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.
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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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01-28-2013, 01:15 PM
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#4
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Well a hitch in the procedings and the ommaya surgery canceled for now. Her EKG showed some T wave abnormality. She has to make an appointment with her cardiologist and get cleared for surgery before they will do the reservoir.
I know anemia and central nervous disease can cause T wave changes. She is anemic because of the chemotherapy.
Anyone else run into this situation?
She is not having chest pain or any other symptoms. We just found this out today and the surgery was scheduled for Wednesday.
Thanks for any input.
Ev
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01-28-2013, 03:50 PM
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#5
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Junior Member
Join Date: Dec 2012
Posts: 4
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
T wave changes are not specific for ischemia. They probably want to be sure her cardiac function is within normal limits. You are right if Susan has anemia ans was tachycardia at the time, that could do it.
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01-28-2013, 08:48 PM
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#6
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
thanks Monica,
Susan has a cardiologist so will have him review everything carefully to be on the safe side. I have not seen the EkG so have no idea what type of abnormality they are talking about. They found the problem during the pre-op series of testing Friday and then compared it to an earlier EKG from her oncologist's office.
We want to be safe above all. Maybe her cardiologist will be able to see a safe path through this so she can still get the reservoir put in.
In the meantime she goes on with the lumbar intrathecal treatments.
Always something!
Ev
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01-30-2013, 11:19 AM
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#7
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Update:
Susan did not receive 80 mg today but remains on 60 mg. The doctor said he did not want to change the dose prior to the surgery. This was the fourth dose on 60. The spinal fluid tested clear last week.
Next - the visit to the cardiologist. Hope his evaluation will allow rescheduling the surgery soon so to allow better perfusion of the medication.
Ev
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01-30-2013, 01:57 PM
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#8
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Junior Member
Join Date: Dec 2012
Posts: 4
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Good news that she received it and that the spinal fluid is crear!! . She is in my thoughts and prayers to get the Omaya and up on the dose. Than is for keeping us posted
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02-06-2013, 05:11 PM
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#9
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Junior Member
Join Date: Dec 2012
Posts: 4
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
All good news! So happy for Susan and you well deserved with endurance, perseverance and help from friends like the ones joining this forum...my heroes! .brighter days will come
Thank you all!
Keep posting good news
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02-13-2013, 02:36 PM
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#11
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
The Ommaya was replaced today using the opposite side this time. The procedure went very well according to the neurosurgeon. She was admitted for observation for two days - I guess the standard routine. She has a headache of course but normal neuro checks.
Now to keep it safe from infection until it heals well.
It is good that this part is over so she can get her treatment using the ommaya instead of the lumbar punctures.
Ev
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02-23-2013, 06:28 AM
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#12
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Senior Member
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
EV,
I hope the new regime starts to show improvement for your daughter, sending prayers from down under.
Jenny
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy
Praying the Herceptin is as good as its hype!!
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02-24-2013, 05:08 AM
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#13
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Wish you luck with this new treatment.
Mario
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02-25-2013, 03:54 AM
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#14
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Guess I should change title or start a new thread, but this is all very connected. The new medicine replacing the topotecan -lysomal tykarabine- was put through the ommaya last Wed. She was prepped with medications -including decradon and then given steroids for two days following.
She did fine for a couple days and then started continual vomiting so is in the hospital trying to get it under control.
The vomiting is not new with her and has happened before the new medication was started. Has been hospitalized for it before.
She was due for radiology to check the spine for obstructions and get them radiated Tuesday, but now is in the hospital a couple days early. I guess more testing will be done to rule out other possible causes.
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03-07-2013, 05:44 AM
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#15
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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
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
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03-09-2013, 10:37 AM
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#16
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Update on Susan.
She is receiving the depocyt every two weeks IT now x five doses. and then will go to once a month. So three more of the every two week before the once a month. It seems the slow release depocyt gives the most side effects on the third/fourth day.
When those kick in she has a very bad day or two. At first, even with steroid prep she was endlessly vomitng and she seemed to have the brain inflamation reaction. Had to be hospitalized. Now the doctor has ordered the steroids to be continued past the old schedule to 4mg once a day continually. However this time two days after treatment she had trouble with walking and fell. Also sleeping continually.
Dr. Monica Loghin MD did consent to talk with me about her case. She thought the local neuro-oncologist was doing all that could be done and going to Houston would not help. She is still getting the 80mg of Herceptin IT on oposite weeks from the depocyt. They cannot be mixed.
The Houston doctor said it was not a good sign that the leptomeningeal areas progressed while on Herceptin 60 mg as Herceptin usually keeps it stable even on lower doses.
She had talked with the Orlando Dr and seemed to think Susan's condition and areas were much more advanced that some others that have had success. For that I can try to blame her old oncologist for not picking up on the disease sooner. Susan had to ask for the MRI.
Dr. Loghin continued to say that Herceptin IT research is in such an early stage. She indicated some have success with only 20 mg and some with 40 mg. Susan did not have success with 4 of the 60 mg doses and one 80 mg dose. It could not even keep her stable. I believe, from her statements, Dr. seemed to think that the disease had overridden the herceptin and the topotecan.
So far she is still getting the IV perjeta and Herceptin through her port to help control any total body problems.
Hopefully the depocyt wil get the rapidly spreading cells in the spine under control, as the other treatment set up had stopped working.
Ev
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03-09-2013, 11:17 AM
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#17
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Senior Member
Join Date: Jul 2008
Posts: 186
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Treatment with T-DM1 frequently works after Herceptin fails to be efficacious. Could use of this compound be considered to help restore control over the cancer?
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03-09-2013, 11:48 AM
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#18
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Senior Member
Join Date: Sep 2007
Posts: 118
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Hard to know. We were wondering about using perjeta IT. It was very difficult to find a doctor willing to do the higher dose Herceptin.
Your suggestion of TDM1 -or even pergeta - IT, might be something to consider but again unapproved and experimental so what doctor would chance trying it?
And of course the guidelines for TDM1 are such that it would not be available to her at this point.
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03-10-2013, 04:57 PM
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#19
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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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#20
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
__________________
Jackie07
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