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Old 01-23-2014, 06:29 AM   #1
marvass
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Join Date: May 2012
Posts: 105
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

MRI of this week:
Carol is still NED even now that she is no longer doing IT herceptin for last 8 months.
Seems that damage done with the stroke has opened the BBB for IV herceptin to pass through. She is only taking 6mg per kilo IV herceptin and nothing else. No signs of fits for the past 7 months.
Stroke is clearing but still some old hemorrhage can be seen in it.
She still has quite a good quality of life, but still exercising to start walking again.

Mario
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Old 01-23-2014, 10:13 AM   #2
Rolepaul
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Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,
Good to hear Carol is doing well. Nina is afraid to stop the IT or IV Herceptin. She is at IV Herceptin every three weeks and IT Herceptin every four weeks. The IV is administered locally and the IT is administered at MD Anderson in Houston.
I think you have a good point about the BBB. It is likely that the IT Herceptin did the job in the time it was administered. The stroke occurring may have been due to the removal of the cancer cells and the collapse of the support system in the brain. That was something I would not have considered a potential issue, but I will forward to others about deep brain lesion potential side effects. The problem is that if the you do not stop the cancer lesions from growing they will kill the person as well. That is something that will have to be thought about by the Brain Cancer specialists.
Good luck. I would love to get out to see you, but it probably will not be this year. I will be going to Hawaii in July for Nina and my birthdays, and then business travel in the Us otherwise.
Glad to hear that Carol is recovering from the stroke. Our thoughts are with you and we hope that your lives are able to return to close to normal.
Paul and Nina
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Old 01-24-2014, 01:03 AM   #3
evlin75
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Join Date: Sep 2007
Posts: 118
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

So glad to hear that Carol is still doing well and gaining strength.
Susan is still getting IT Herceptin 80 weekly. She is now on Abraxine also weekly IV for the enlarged clavicle lymph nodes. The Abraxine is shrinking them and she is doing well on this routine. They did have to cancel one treatment of the Abraxine because of low platelets, but other than losing her hair, she is handling it well and feeling fine.
She has not had an MRI for a while but she is sure feeling much better.
My best to all,

Ev
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Old 01-24-2014, 11:50 PM   #4
dchips1
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Location: Mesa, Az
Posts: 219
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Hi Mario I am glad Carol is doing better. Evilin I am glad daughter feeling better as well. Thanks Paulfor leading the way.
I am having surgery to debulk and remove the t 8 lesion and fluid on the 29th. Neuro symptoms are rapidly getting worse. with no quick IT drug available this is what My family and medical team have decided to do. Cool thing is it will be done in Phoenix at Barrows Neurological institute, world class neuro drs and some really good technology and inpatient neuro rehab. since I am already his patient was able to get in very quick. The fluid has pushed the lesion more toward the right side laminectomy style. Best case coming out weak, which I already am, but should stop the growth and stop further nerve damage. Then go back to IT/IV herceptin

Peace and Prayers to all
I will update when they let me have my electronics back!!!!!
__________________
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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Old 01-25-2014, 09:20 AM   #5
evlin75
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Join Date: Sep 2007
Posts: 118
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

I will be thinking of you on the 29th and am hoping you have great success with the surgery. Will be looking forward to your update.
My very best wishes !

Ev
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