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Old 07-21-2013, 03:28 AM   #21
'lizbeth
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Location: Sunny San Diego
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Re: Why do I read posts saying hercept not working

Yes, I think Linn65 that you should search through the posts. There has been discussion on the board about foods to eat with the ER+ status, and those to avoid. Lowfat, avoid sugar, and processed foods, pesticides, etc.

My doctor of physical therapy wanted me to exercise at a certain level. He was a specialist in cancer patients, and a study came out that showed a significant decrease in recurrent rates for patients that were at a 10 MET level. Likely because it affects ligands.

SoCalGirl is right, you need to take a holistic look to find all your tools. We've been focusing only on Western medicine.
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Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease

Last edited by 'lizbeth; 07-21-2013 at 03:30 AM.. Reason: change of wording
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Old 07-21-2013, 05:02 PM   #22
linn65
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Re: Why do I read posts saying hercept not working

SoCalgal, I have as far as I know have done everything treatment wise. Diet I am eating alot more fruit. . Exercise uhm I have sucked at that. I have just started feeling better physically with bumps in the road....well, some pot holes. My Dad having a heart attack this month then ended up having open heart, and I didn't know if he would be around today has been a battle I wasn't expecting. However, after three weeks in hospital and now in a program at the nursing home called Bounce Back he is doing amazingly better.

Now, I have been working at understanding what HER2 is and how far they have come in Research. Knowledge is power, and I enjoy learning.

I am working towards progress in all aspects of life, and I can tell you are a pretty funny lady on my other post....make a list of bad things about ex! Lol. I did that and I just forgot for a little bit!

Definitely, interested in the holistic approach. . But man I hate exercising. I could use a personal trainer to whip my butt in shape.
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myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-29-2013, 10:20 AM   #23
Rolepaul
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Location: Boulder Colorado as of January 2013
Posts: 391
Re: Why do I read posts saying hercept not working

Lani is right. Sometimes the doctor hits upon something that kills all the weeds (cancer cells). Other times, the cancer cells develop a resistance to the medicine and grow out. The previous methods were to wait for the patient to note something was wrong in an area besides the breast. Now the technology is to know which areas to look at that are likely to have first indications of a problem and treat the whole body or those specific areas as determined by protocol. The past showed no method to get rid of the disease in many areas, and that is changing. The goal is to get the disease as a capsule in the breast, but if there is a genetic issue that causes cancer to more easily occur then the BC woman must address this with her doctor. I agree with Lani in that bone marrow is a likely hiding spot for cancer cells. That is where stem cells form and these cells are the ones that also have the highest chance of being a cancer seed. The brain is not treated by some methods due to the blood brain barrier. Getting medicine into bones is difficult. If there is mucous (lungs and colon) that can also make it difficult for the drug to get to cancer cells. The idea behind vaccines is that these are able to note the cancer cells in all areas of the body. The current vaccines are still not the solution today, but may be tomorrow.
Do not give up hope in a treatment for the group or yourself. Sometimes there is a "hero" that comes along and saves the princess. Sometimes the dragon never comes. Hope for the second and may the first happen for you if you need it.
Paul
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Old 08-11-2013, 05:58 PM   #24
CoolBreeze
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Re: Why do I read posts saying hercept not working

I have said herceptin doesn't work for me, but it's shortcut for saying that my tumors have progressed on it. The truth is, we don't know if it has worked or not because we don't know what my tumors would have done without it. I've been on herceptin since I was diagnosed with cancer and never stopped.

Without herceptin, maybe I'd be dead already. But it has not arrested the cancer like it does with some.

You can't prove a negative and this is why we don't use anecdotal or single person experiences to base medical treatment on.

So herceptin doesn't work......or does it? Who knows?
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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