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12-17-2014, 09:39 AM
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#181
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Repeat MRI scans show that full remission has occurred. Two residual spots are Gamma knife scarring from December 2009 to a high degree of confidence. Nina is walking five miles per day, is doing yoga four days per week, and is performing all her previous activities without any side effects. First time ever at MD Anderson. I hope this gives a potential road map for others. All it takes is knowledge, determination, and good doctors. Luck was also important for Nina.
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12-17-2014, 09:50 AM
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#182
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Stellar news. I just love this thread.
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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02-13-2015, 04:26 PM
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#183
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Feb 12 results as good as October and December. That means at least four months (and probably longer) with no brain or systemic disease seen. Almost ready for the happy dance, but Nina is pretty scared. She has five tough years of fighting brain mets (although the last 2 1/2 have been very positive). No spinal disease seen since May of 2012, almost four years. How do I get her to think in terms of ten years out and not two months until the next MRI scans? She is healthy and wants to go give massages to keep her spirits up and help bring extra cash into the house. We can definitely use it.
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02-13-2015, 04:39 PM
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#184
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Very happy for you and Nina !! Thanks for sharing this great news !!
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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02-26-2015, 09:58 AM
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#185
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
MRI and CT of today - shock!
3 new lesions can be seen for the first time in over 2 years, 7mm, and 2 others of 4mm.
We have been on IV herceptin 6mg/kg for past 21 months. Now back to problems!
I would like to ask anyone of what can be done except IT herceptin, anyone is doing IT pertuzumab yet?
Does TDM1 work for the brain?
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02-26-2015, 10:07 AM
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#186
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Ask to have 0.4 mg of topotecan in 5 mls of sterile water added to the treatment. Do not use TDM-1 as the non-Herceptin part is too damaging. University of Southern California in Los Angeles is getting ready to run Pertuzumab for IT shortly. Contact them today. Eric Chang would be one of the ones to try to meet.
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02-26-2015, 10:17 AM
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#187
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Thank you Paul, my oncologist in Europe is researching on best way to go, till next week and then we decide from there. Will tell him about the topotecan.
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02-26-2015, 10:25 AM
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#188
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Marvin, I would have them start the Pertuzumab at 40 mg for a few weeks and then go to the same level as you were having done with the IT Herceptin. Also, I wonder if you go back on the IT Herceptin whether that stops progression.
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02-27-2015, 07:32 AM
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#189
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
But has it already been tried intrathecally?
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02-27-2015, 07:36 AM
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#190
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
No, but I know what the protocol will be. That is part of something not public. It goes along with the Herceptin not tried at the higher doses prior to January 2012 for people like Carol and Nina. I would look at the Toptoecan and Herceptin as the clinical trial might yet be open.
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02-27-2015, 07:40 AM
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#191
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Our oncologist seems to favour for IT herceptin at 150mg again as we did before before trying anything else. Now Carol weighs only 65 kg, so it is a very high dose, 2.3 mg/kilo.
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02-27-2015, 07:45 AM
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#192
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Ask him to think about toptotecan as well. He can ask Dr. Loghin at MD Anderson Brain and Spine in Houston Texas.
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03-09-2015, 01:41 AM
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#193
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
First intrathecal herceptin done last friday 6th March after 21 months without any such treatment.
Dose 150mg herceptin and 50mg hydrocortisone.
No pain or funny feelings. All went well, not even painkillers or dexamethasone were needed.
At the moment this will be the only treatment till we scan again in 12 weeks.
Mario
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04-20-2015, 09:27 AM
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#194
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Mario,
That is great news. Send my wishes to Carol.
We are still trying to get to Malta on a trip. I am halfway through working in Omaha during the week and driving home to Denver on the weekends. I get $500 more than it costs, so I am trying to bankroll a trip out of this to Italy.
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04-20-2015, 11:27 AM
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#195
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Senior Member
Join Date: May 2011
Posts: 137
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Hello,
I was just coming to look for this thread, and here it is front and center. I could use some help!
With a previously treated brain metastasis possibly growing ( unknown if its growth or necrosis) on my latest MRI's, plus a new 9 mm spot very close to it, I am trying to figure out how best to proceed with treatment. I have had stereotactic radio surgery- once to this older spot, and once to another spot that has shrunk.
I mentioned IT Herceptin to my Oncologist, who was very open minded about it. It has not been done in my treatment facility, and he has many questions about it. Is there a doctor who would answer his questions such as dosage, and pre-meds, side-effects, etc.? Or should I seek out going somewhere for treatment? I live on the border of North Dakota and Minnesota, and have had great treatment here so far.
For now they have referred me to a Neurosurgeon for a consult, but I am open to suggestions, any help you can offer. Thank you!!
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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04-20-2015, 09:02 PM
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#196
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Vicky leptomeningeal metastases are those that sit on the outer linings of the brain and spinal cord. Cerebrospinal fluid circulates within those membranes.
If your brain mets are not near the outer (or inner) linings of the brain, it is unlikely IT herceptin can get to them as I understand it.
Please be certain to clarify where your brain mets are and how far from the CSF they may lie.
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04-20-2015, 10:06 PM
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#197
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Lani,
Actually, at the doses that were used with Nina and Carol, three of the deep brain patients had good results. It just means that steroids are needed to keep the swelling from causing problems. It is not easy to get patients treated, but there have been three that I am aware of that all had good results. IT does work better on leptimeningeal cases, but there is pretty good evidence that these higher doses are giving positive results as well. As always, Gamma Knife should be the first choice if the lesion is smaller than 2 cm and not near critical function areas. I get information that is not yet public knowledge. That is what I do for a living. There are overseas locations that are not always Medical Industry or medical research friendly until a leader's wife/daughter/mother/granddaughter has an issue.
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04-22-2015, 02:57 PM
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#198
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Senior Member
Join Date: May 2011
Posts: 137
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Thank you Rolepaul, and Lani for your insight. I appreciate the sharing of info that can me figure out all of my treatment options and to navigate this tricky time as best as I can.
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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06-10-2015, 10:34 AM
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#199
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Senior Member
Join Date: May 2012
Posts: 105
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
MRI of yesterday:
All three spots gone and none new seen, thank God.
We have done 10 IT herceptin till now each of 150mg herceptin, and 50mg hydrocortisone, each shot every 10/11 days, i.e. 2 times every three weeks. We also did 6mg/kg IV herceptine every three weeks.
Will continue same treatment for another 3 months, and MRI again.
Mario
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06-10-2015, 10:40 AM
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#200
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Senior Member
Join Date: May 2014
Location: San Diego
Posts: 411
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Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase
Mario,
Thanks for sharing your good news! Looks like this treatment is working. I'm very happy for you.
Take Care,
Brenda
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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