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Old 03-07-2017, 02:16 PM   #1
Cathya
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How Her2+ BC patients develop brain metastases

City of Hope researchers find how HER2-positive breast cancer patients develop brain metastases

March 2, 2017 at 8:53 PM
Ninety percent of cancer deaths are from cancer spread. Breast cancer patients, for example, typically do not die because cancer returns in their breast, they die because it spreads to other parts of their body. The most dangerous of which is the brain. Approximately 40 percent of all women with HER2-positive breast cancer will develop brain metastases. Now City of Hope researchers have found how this happens.

Breast cancer cells wrap themselves in reelin -- a protein typically found only in the brain -- that allows the cells to disguise themselves as "friend and not foe," avoiding a system in the brain designed to detect enemy cells. From these disguised cells, new deadly brain tumors form.

"More women than ever are surviving breast cancer only to die from breast tumors growing in their brains years after they've been declared cancer-free," said City of Hope dual trained neurosurgeon and scientist Rahul Jandial, M.D., Ph.D., who led the study available online and slated for the upcoming print publication of the Clinical & Experimental Metastasis, the journal for the Metastases Research Society. "I wanted to understand why women with HER2-positive breast cancer (around 20 percent of all breast cancers) have higher rates of brain metastases than women with other breast cancer subtypes and in turn, find their biological Achilles heel to develop new medicines."

After performing brain surgery, Jandial and his team took leftover tissue samples and compared them to breast cancer tissue removed from mastectomies in the same women. They compared the expression of proteins and found that reelin expression was low in primary breast cancer tissue. However, its expression was significantly higher in HER2-positive breast cancer metastasizing to the brain.

"The cells are essentially able to act as spies that look like citizens," said Jandial. "They release a mesh of protein and escape the brain's natural defense weapons, causing tumors to grow in the brain."

Understanding these mechanisms is an important step in developing new therapies to treat brain cancers -- especially for metastatic cancers. Metastases are responsible for 90 percent of all cancer deaths, and patients diagnosed with brain metastases only have a 20 percent chance of surviving a year after diagnosis.

Source:
City of Hope
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Nice! My hair came back really curly. Hope it lasts lol.

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Old 03-07-2017, 03:56 PM   #2
nancy dip
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Re: How Her2+ BC patients develop brain metastases

Approximately 40 percent of all women with HER2 positive breast cancer will develop brain metastases. I am shocked by this statement! Any thoughts please?
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Found lump myself 8 months after routine mammogram.
29/11/06-WLE and then re-excision to get clear margins.
Tumour was 1.2cms; Grade3; Er+ Pr+ HER2 3+++; SNB negative out of 9 nodes.
Chemo was Epirubicin every 3wks x4 then Xeloda (2wks on, 1wk off) for 4 cycles. ( I am part of the TACT2 trial.)
Rads x25
Arimidex for 5 yrs.
Hoping to start Herceptin within the next 2 weeks (we have to follow the HERA protocol to qualify for Herceptin in the U.K.) I worry about the delay in starting Herceptin!! Started 8/10/07
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Old 03-07-2017, 06:16 PM   #3
jaykay
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Re: How Her2+ BC patients develop brain metastases

I am shocked, too. And somewhat scared
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 03-07-2017, 06:30 PM   #4
Cathya
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Re: How Her2+ BC patients develop brain metastases

I had stage 3C bc with an inoperable tumour in my supraclavicular node....sort of leading to the brain I thought. I was very nervous of this possibility as was my doctor. So far so good. When I was diagnosed the odds were very low of my survival as they were older stats. I came to believe that statistics are not necessarily to be believed.

touch wood. lol

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Nice! My hair came back really curly. Hope it lasts lol.

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Old 03-07-2017, 06:59 PM   #5
jaykay
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Re: How Her2+ BC patients develop brain metastases

From your mouth...
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 03-08-2017, 05:43 AM   #6
TiffanyS
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Re: How Her2+ BC patients develop brain metastases

I’m more scared with the “patients diagnosed with brain metastases only have a 20 percent chance of surviving a year after diagnosis”, especially since 40% of women with HER II positive breast cancer are expected to get brain metastases. Let’s hope they come up with a new therapy to treat brain metastases soon! Very scary!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6 Second CA-15-30 blood test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
0/17 – Started to develop severe back pain – worried the cancer has spread to my spine.
03/17 – Third CEA blood test and CA-15-30 blood test – awaiting results.
03/17 – CT Chest scan to see if there’s improvement to chest and lungs – awaiting results. If results are good, I get to stop taking Taxol!
03/17 – Second brain MRI scheduled for end of month.
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Old 03-15-2017, 07:40 AM   #7
Donna H
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Posts: 169
Re: How Her2+ BC patients develop brain metastases

I was told I had a 40% chance of recurrence if I just had surgery and no chemo, Herceptin, radiation, etc. So maybe that is the 40% they are referring to? That is my hope anyway! Cancer just sucks....no two ways about it!
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Old 03-15-2017, 07:57 AM   #8
TiffanyS
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Posts: 459
Re: How Her2+ BC patients develop brain metastases

I just went through my notes, and my doctor told me that with just surgery, there is a 35% chance of the cancer coming back, however, radiation brings it down to 16%, and chemo brings it down even lower. I did all three and still had a recurrence, so I guess these statistics don’t apply to me!

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6 Second CA-15-30 blood test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
0/17 – Started to develop severe back pain – worried the cancer has spread to my spine.
03/17 – Third CEA blood test and CA-15-30 blood test – Both normal at 2.5 and 25
03/17 – CT Chest scan to see if there’s improvement to chest and lungs – awaiting results. If results are good, I get to stop taking Taxol!
03/17 – Second brain MRI scheduled for end of month.
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Old 03-15-2017, 08:04 AM   #9
Donna H
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Re: How Her2+ BC patients develop brain metastases

My take away from all this is there's a reason it is called the practice of medicine. The doctors and medical teams are doing the best they can trying to deal with this "moving target" called cancer.
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Old 03-16-2017, 12:17 AM   #10
Jedrik
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Re: How Her2+ BC patients develop brain metastases

Statistics don't apply to individual persons (or actions) ever, they are just data put into a certain perspective.

Since people aren't logical but emotional beings they're not equipped to judge their personal risk logically but are directed by hope and fear. We need just enough fear to watch out for ourselves and plenty of hope to keep going.

And while each of us will end up as a data point in one of those statistics, these don't determine our personal future. They are just a tool to give us clues about how best to proceed.
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Dx 9/17/2015, IDC/Paget's, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ at age 57
Surgery 10/6/2015 Lymph node removal: Sentinel
Chemotherapy
start 10/19/2015 Carboplatin (Paraplatin), Taxotere (docetaxel)
Targeted Therapy start 10/19/2015 Herceptin (trastuzumab), Perjeta (pertuzumab)
Surgery 02/23/2016 MX Left, PMX Right
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Old 04-30-2017, 01:41 PM   #11
AlaskaAngel
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Question Re: How Her2+ BC patients develop brain metastases

I will have to get a closer look at the work they have done with this, to see whether they are talking about detecting the reelin protein solely by actual tissue sampling, or whether there is a current form of imaging that can detect it.

I'm still receiving annual breast MRI's and annual mammograms (alternating 6 months apart), although I haven't had an onc since 2006. (I never did any trastuzumab, and chose to discontinue tamoxifen fairly early on.)

I had a definite memory deficit this spring that was concerning, but with no physical evidence to support anything but doing serial mini-mental exams for future comparisons, I had to use a pick, hammer and shovel to get any brain imaging done. A noncontrast brain MRI showed nothing. Which is what it would show if noncontrast brain imaging doesn't detect the reelin.

A.A.
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 04-30-2017, 04:10 PM   #12
deevee903
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Re: How Her2+ BC patients develop brain metastases

I wish I didn't read this.
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Dee

Dx 3/1/2016 on routine mammo, DCIS/IDC, Left, 1.2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR-, HER2+ (IHC) BRCA neg
Surgery 4/5/2016 Mastectomy: Left; Reconstruction w/silicone implant
Chemotherapy 7/6/2016 TCH 4 rounds
1 year total Herceptin
Arimidex 5 year plan (stopped after 1 year due to unmanageable SEs)
Tamoxifen started 10/2017
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Old 04-30-2017, 09:18 PM   #13
SoCalGal
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Re: How Her2+ BC patients develop brain metastases

Dee- try not to let this kind of info get into your head (pun intended). What is missing from this (and most) studies is info as it relates to people going thru current day protocol. The 40% or 4% or 1% or whatever - you finished your treatment and you deserve to act and live as if you are cured. Or in lifelong remission. It will give you a better quality of life, and in general the "what if's" rob us of time. Sorry that you are so worried, the more time that passes, the braver you will feel.
And just for the record, I had a single brain met in 2008, and am quite fine and still going strong.
ANything is possible.
Knowledge is power
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, to remove skin mets. Not able to get clear margins. So schedule another surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line – cut out, cut out, cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable. New onc orders PET/ct & Brain MRI to re-stage me.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 trial but then 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1 and due for MRI brain check (check please!).
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
2017 I AM COMING FOR YOU!
April 2017 - TEN YEARS STAGE 4 - CUCK FANCER!
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Old 05-01-2017, 04:46 AM   #14
deevee903
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Re: How Her2+ BC patients develop brain metastases

SoCalGal,

Thank you for the encouraging words. I needed them.
I have been getting in my head lately and some days I feel cancer is ALL I think about.
After reading your signature, I am most impressed with your outlook and your tenacity. You are amazing-thank you again. xo
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Dee

Dx 3/1/2016 on routine mammo, DCIS/IDC, Left, 1.2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR-, HER2+ (IHC) BRCA neg
Surgery 4/5/2016 Mastectomy: Left; Reconstruction w/silicone implant
Chemotherapy 7/6/2016 TCH 4 rounds
1 year total Herceptin
Arimidex 5 year plan (stopped after 1 year due to unmanageable SEs)
Tamoxifen started 10/2017
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Old 05-03-2017, 01:46 AM   #15
Vinafera
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Location: Greater Hartford, Connecticut.
Posts: 8
Re: How Her2+ BC patients develop brain metastases

I would imagine this article also applies to all forms of cancer and not just breast cancer.
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Old 05-03-2017, 11:12 AM   #16
meo
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Join Date: Aug 2011
Posts: 84
Re: How Her2+ BC patients develop brain metastases

To my sisters that have had brain mets....how was it first detected?
Scan, or did you have symptoms?
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dx 7/2011
open incisional biopsy w/o clear margins
IDC IIa Her2+++ ER-PR- Ki-67 72%
changed doctors
9/2011 Rt breast mast w/expander
Sentinel node neg
scans clear
10/2011 port in
10/2011 began TCH
2/2012 last TC. Herceptin through 10/2012
severe osteopenia
7/2012 prophylatic left mast, node clear
11/2012 anemic
12/2012 began MDAnderson clinical trial
1/2013 implants in, port out!
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Old 05-08-2017, 12:15 PM   #17
Rolepaul
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Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 385
Re: How Her2+ BC patients develop brain metastases

Seven years after finding Brain mets on a MRI scan (November 2 2009) and five years after new brain mets and 20 to 25 spine mets (December 15, 2011) my wife is still alive. Doctors are now finding they have to do MRI scans of the brain and spine for HER+ patients for six to ten years. The problem has been that most doctors don't know what to do. I have helped a significant number of patients get Intrathecal Herceptin (now paired with a chemotherapy also IT) with pretty decent results. The problem is that a clinical trial takes took long to recruit a patient, so they are rarely healthy enough to participate. I challenge doctors with how many patients do they have that have gone into remission. Then I say that the vast majority of the patients that have tried the MD Anderson protocol have gone into remission. There is hope for patients, but you have to ask your doctor to look at the treatments. That can be hard for a medical professional's ego. If you run into CNS mets from HER+ ask about this treatment. If your doctor says it does not work, ask for the evidence in clinical trials or other documented cases.
There is the ability to raise the 20% to 90% or higher, but it takes patients asking the question.
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Old 05-08-2017, 06:23 PM   #18
Kat77
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Join Date: Apr 2015
Posts: 11
Re: How Her2+ BC patients develop brain metastases

Seven years is incredible, thank you for the information provided in your posts.
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Old 06-07-2017, 05:08 AM   #19
Lani
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Join Date: Mar 2006
Posts: 4,703
Re: How Her2+ BC patients develop brain metastases

RolePaul could you specify whether the "brain mets" and "spine mets" your wife had were parenchymal or leptomeningeal?
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Old 07-10-2017, 09:18 AM   #20
Rolepaul
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Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 385
Re: How Her2+ BC patients develop brain metastases

Sorry to be off the board so long. There were other matters that were pressing. My wife had leptomeningeal Brain mets. She was treated with IT Herceptin and Toptoecan. She is in remission.
The 40% mets to the brain really meant that 40% of the women that had mets were found to have mets in the brain/spine at autopsy or based on MRI scans. Brain/Spine mets are typically more slow growing than other organs, but can be devastating when they occur. I still recommend, as I did in November 2008, that if mets are found that a brain MRI scan also occur. If you do the math, the number of patients that are likely to have death occur from brain mets is 850 to 2000 patients per year. There are many proposed therapies, but I think the success of 80 to 100 mg of IT Herceptin (with or without Toptoecan) has shown real promise in the treatment of patients. Xeloda/Tykerb has shown benefits, as has OMT 380 for those patients who do not respond to surgery and radiation. I have helped many (over 35) women get this treatment. It is hard for me to recommend something different at this point, but I hope to do so in the future.
Nina started IT Herceptin at half dose on Jan 2012, and full dose on Feb 8 2012. She is still alive and doing well. The percentage of patients with both deep brain and lepto mets who have responded well to this treatment is over 80%. Start with a request for Compassionate care as soon as you find the CNS mets, and fight hard. The ability to get the meds and to get US Insurance to pay for it is 100% at this point. Getting compassionate care from your cancer center is getting easier as well. Let me know if you need help. I am not a doctor or medical practitioner, so this is a recommendation from someone with a lot of experience in helping patients with this issue.
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