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05-31-2012, 07:25 PM
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#1
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Senior Member
Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
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TDM-1 in the news
Hi,
Tomorrow, there will be a short article in the New York Times, which discusses TDM-1. There will also be a clip on NBC Nightly News on Sunday June 3rd, 2012 at around 5:30 - 6:30 or later, depending on what celebrity is hogging the news that day.
Wishing everyone a great weekend.
Best wishes
Fern
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.
Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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06-01-2012, 09:28 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: TDM-1 in the news
Here's the article: (hope Dr. Lambert and ImmoGene make some of the money!)
ASCO starts soon!!!
http://www.nytimes.com/2012/06/01/bu...gewanted=print
May 31, 2012
A New Class of Cancer Drugs May Be Less Toxic
By ANDREW POLLACK
Fern Saitowitz’s advanced breast cancer was controlled for about a year by the drug Herceptin and a toxic chemotherapy agent. But her hair fell out, her fingernails turned black and she was constantly fatigued.
She switched to an experimental treatment, which also consisted of Herceptin and a chemotherapy agent. Only this time, the two drugs were attached to each other, keeping the toxic agent inactive until the Herceptin carried it to the tumor. Side effects, other than temporary nausea and some muscle cramps, vanished.
“I’m able to live a normal life,” said Ms. Saitowitz, 47, a mother of two young children in Los Angeles. “I haven’t lost any of my hair.”
The experimental treatment, called T-DM1, is a harbinger of a new class of cancer drugs that may be more effective and less toxic than many existing treatments. By harnessing antibodies to deliver toxic payloads to cancer cells, while largely sparing healthy cells, the drugs are a step toward the “magic bullets” against cancer first envisioned by Paul Ehrlich, a German Nobel laureate, about 100 years ago.
“It’s almost like we’re masking the chemotherapy,” said Dr. Edith Perez, a breast cancer specialist at the Mayo Clinic in Jacksonville, Fla.
One such drug, Adcetris, developed by Seattle Genetics, was approved last August to treat Hodgkin’s lymphoma and another rare cancer. T-DM1, developed by Genentech, could reach the market next year. Data from a large clinical trial of T-DM1 is expected to attract attention at the annual meeting of the American Society of Clinical Oncology this weekend in Chicago.
Numerous other companies, from pharmaceutical giants to tiny start-ups, are pursuing the treatments, which are known variously as antibody-drug conjugates, armed antibodies or empowered antibodies. “I don’t think there is a major pharma or a midsized pharma with interest in cancer that doesn’t have a program or isn’t scrambling to put one together,” said Stephen Evans-Freke, a managing general partner at Celtic Therapeutics, an investment firm that recently committed $50 million to create a new company, ADC Therapeutics, to develop antibody-drug conjugates.
About 25 such drugs from a variety of companies are in clinical trials, according to Alain Beck, a French pharmaceutical researcher who closely tracks the field. Genentech alone has eight in clinical trials besides T-DM1, and another 17 in earlier stages of development.
Many of the drugs use technology from either Seattle Genetics, based in Bothell, Wash., or ImmunoGen of Waltham, Mass., which supplied the toxin and linker used in T-DM1.
The armed antibodies do not work for all patients and they are not totally free of side effects. T-DM1, for instance, can lower blood platelet levels. The drugs are also likely to be expensive. Adcetris costs more than $100,000 for a typical course of treatment.
Biotechnology drugs called monoclonal antibodies, like Herceptin, Rituxan and Erbitux, are already mainstays of what is called targeted cancer therapy. These laboratory-produced molecules mimic the antibodies made by a person’s immune system to fight infection. But instead of attacking pathogens these antibodies attach to specific proteins on the surface of cancer cells.
But antibodies by themselves have a limited ability to kill tumors. So the antibodies are usually given with more conventional cell-killing chemotherapy drugs, which cause side effects because they can also attack healthy cells.
The new approach chemically attaches a toxin to the antibody, increasing its killing power while reducing the need to give toxic drugs separately. After the antibody binds to a cancer cell, it is taken inside the cell like a Trojan horse, and the toxin is released.
While armed antibodies are sometimes likened to guided missiles with toxic warheads, they actually cannot guide themselves to tumors.
Rather, they float through the bloodstream, bumping against various cells. But they stick only to the cells bearing the target protein.
“These are like floating sea mines,” said K. Dane Wittrup, a professor of chemical and biological engineering at the Massachusetts Institute of Technology. “But when they end up in a particular harbor, they blow up.” Less than 1 percent of the drug actually makes it to the tumor, he estimated.
The antibody used in Adcetris, which binds to a protein on malignant cells called CD30, had little effect on cancer when tested alone, even at doses 20 times as high as used now. But when linked to a toxin, it shrank tumors in 75 percent of those with Hodgkin’s lymphoma.
Aimee Blaine, a petroleum engineer from Bakersfield, Calif., who has had Hodgkin’s lymphoma since 2004, was virtually out of options after traditional chemotherapy and a stem cell transplant failed to cure her disease.
But four days after taking Adcetris in a clinical trial, the unbearable itching that accompanied her disease vanished, she said.
Eventually, so did the cancer. Ms. Blaine, 40, has been in remission since her last dose in January 2011 and recently returned to work for the first time in seven years.
Like Herceptin, T-DM1 binds to what is known as the HER2 protein and is meant to treat only the roughly 20 percent of breast cancer cases characterized by an abundance of that protein.
In one trial involving 137 women, including Ms. Saitowitz, T-DM1 proved both more effective and less toxic than a combination of Herceptin and the chemotherapy drug docetaxel as an initial treatment for metastatic breast cancer.
Those who received T-DM1 went a median of 14.2 months before their disease worsened, compared with 9.2 months for those getting the two-drug combination. Yet only 46 percent of the T-DM1 patients suffered a severe side effect, half the rate of the other group.
At the cancer conference, researchers will present results of a pivotal trial involving nearly 1,000 women. Though armed antibodies are easy to envision, it has taken more than three decades to make them practical, with many failures along the way.
With the first armed antibody to reach the market, Mylotarg, the toxin sometimes fell off the antibody prematurely, causing side effects. Approved in 2000 to treat acute myeloid leukemia, Mylotarg was removed from the market by its manufacturer, Pfizer, in 2010 after new studies showed it did not prolong lives and had safety problems.
Since then, two antibodies linked to radioactive isotopes have been approved to treat non-Hodgkin’s lymphoma — Bexxar from GlaxoSmithKline and Zevalin from Spectrum Pharmaceuticals. These drugs, while effective, are more cumbersome to use than antibodies linked to chemical toxins.
Researchers first tried to use existing chemotherapy drugs as the payloads, but they were simply not toxic enough. That is because less of a drug gets to the tumor when carried on an antibody than when the drug floods the body by itself.
Seattle Genetics and ImmunoGen use toxins that are hundreds of times as potent as typical chemotherapy agents. They are too toxic to be given by themselves.
The linkers have proved even trickier to develop since they must keep the toxin attached to the antibody while in the bloodstream, but then release the toxin inside the cancer cell.
Dr. John Lambert, executive vice president for research and development at ImmunoGen, will be in the audience at the cancer conference as the fruits of 30 years of work are presented.
“To get to this point is an indescribable feeling, actually,” he said.
__________________
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06-01-2012, 10:09 AM
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#3
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Senior Member
Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
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Re: TDM-1 in the news
Hi Sarah,
Thanks for posting this. The picture is of me and some of the interview that Andy Pollack, did with me.
Best wishes
Fern
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.
Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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06-01-2012, 10:25 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: TDM-1 in the news
well Fern you look beautiful and so glad the TDM1 is working its magic for you. Your family must be pleased also. Great piece and nice to read the reactions from a real person going through it and hear you say the side effects are less than old fashioned chemo.
I lived in LA for many years, loved it, have good friends still there. we lived in Laurel Canyon in a very countrylike setting with deer, coyotes and rattle snakes!
By any chance are you being treated at St Joseph's??? Just asking because I have a dear friend there.
Keep posting about how it goes. All very exciting and hopeful.
Health and Happiness
hugs and love
sarah
__________________
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06-01-2012, 11:51 AM
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#5
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Senior Member
Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
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Re: TDM-1 in the news
Hi Sarah,
I am being treated at the Jonsson Comprehensive Cancer Center, home to Dr Dennis Slamon. My doctor is Dr Sara Hurvitz, who I think is an amazing doctor.
I had a met to the brain, while on TDM-1 and being a lead researcher, she asked for an exception. It was granted, the brain met was radiated, and I continued on TDM-1.
I am now on a cross over from the trial, and because of what happened to me, part of the protocol is to allow women on the cross over to continue on TDM-1 even if they get a brain met, provided that the brain met is treated with radiation.
This may be good news for anyone currently on TDM-1. However, I do understand that the protocols for each trial are different.
I live in West Hills, closer to Topanga Canyon, and am so grateful to have the treatment UCLA is able to provide, available to me.
NBC Nightly News also did an interview with me, and it will air Sunday evening.
The New York Times will also be doing another article on TDM-1 in the upcoming weeks.
Thanks again.
Best wishes
Fern
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.
Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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06-01-2012, 02:03 PM
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#6
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: TDM-1 in the news
Dear Fern -
GREAT P.R. for you, the drug and many more who are waiting so impatiently for approval for this drug.
We need more info like that to pressure the FDA.
As Sarah says, keep us posted on you and TDM-1 news you find.
Two young children - good for you!
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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06-01-2012, 02:09 PM
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#7
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Senior Member
Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
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Re: TDM-1 in the news
Hi Steph,
Two young children, and recently divorced. The other interview, is actually tonight on NBC Nightly News and not on Sunday.
Best wishes
Fern
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.
Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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06-01-2012, 03:14 PM
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#8
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: TDM-1 in the news
Hi Fern,
It is a beautiful picture of you on the news! I am very happy to hear that you are doing well on TDM1. We are praying it will be soon be available for people that need it !
__________________
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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06-01-2012, 08:44 PM
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#9
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Member
Join Date: Jul 2008
Location: Ontario, Canada
Posts: 18
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Re: TDM-1 in the news
And the results of the EMILIA trial are being presented at the ASCO conference Sun afternoon. Exciting times! Now hopefully the ball keeps rolling!!
__________________
diagnosed April, 2007, age 36 - stage IV, mets to liver; ER+ (slightly), PR-, HER2+
MRM April 26, 2007
started chemo May 25, 2007 - Taxotere and Herceptin
finished chemo Oct 2007, continue on Herceptin for life, also on Tamoxifen
MRI in Jan 2008 shows no evidence of cancer in liver - NED!!
recurrence in left axilla nodes April 2010
now highly ER+, still HER2+
oophorectomy July 2010
start TDM1 (Emilia) trial Sept 2010
it's working!! can still palpate small node in axilla, but remain NED everywhere else
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06-01-2012, 09:40 PM
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#10
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Senior Member
Join Date: Apr 2012
Posts: 87
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Re: TDM-1 in the news
Hi Fern,
My wife, MJ, and I watched you on NBC news tonight here in Washington, D.C. Did they change it from Sunday to Friday or will it also be on Sunday as well? It was very inspiring! ~Greg
__________________
08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)
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06-01-2012, 10:58 PM
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#11
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Senior Member
Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
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Re: TDM-1 in the news
Hi Greg and MJ,
First of all congratulation on your marriage, wishing you decades of health and happiness.
They aired the show tonight instead of Sunday, but here are the links to it, on NBC as well as a web only interview.
http://video.msnbc.msn.com/nightly-news/47653323
http://video.msnbc.msn.com/nightly-n...3323/#47652878
Thank you for your kind words.
Best wishes
Fern
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.
Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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06-02-2012, 03:53 AM
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#12
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: TDM-1 in the news
Thanks Fern
I am hoping to be able to use the links here in England. So pleased you are doing so well.Thanks for the continued updates.
Ellie
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06-02-2012, 04:23 AM
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#13
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Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
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Re: TDM-1 in the news
Thanks! I posted the link to the article on my Facebook page.
- Penny
__________________
...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)
Penny
July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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06-03-2012, 02:14 PM
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#14
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Senior Member
Join Date: Apr 2012
Posts: 87
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Re: TDM-1 in the news
Thanks Fern. We had a great wedding. Jamaica was amazing.
__________________
08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)
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06-04-2012, 02:41 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Re: TDM-1 in the news
Thanks for the links to your interviews Fern. They are talking about it on TV here in Australia tonight also.
__________________
Christine
DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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06-04-2012, 05:29 AM
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#16
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: TDM-1 in the news
An article about TDM1 yesterday in a very popular French newspaper! I hope there will be a lot of articles in Europe so TDM1 will be announced fast.
Here is the link for French speaking friends.
http://www.leparisien.fr/laparisienn...12-2030209.php
Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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06-04-2012, 07:06 AM
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#17
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Member
Join Date: Sep 2011
Location: Melbourne,
Australia.
Posts: 18
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Re: TDM-1 in the news
Read this in the papers in Melbourne today, it is all very exciting.
Hope it gets to the ladies that need it a.s.a.p.
Cheers,
Cheryl
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06-04-2012, 10:15 AM
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#18
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: TDM-1 in the news
Fern, It is fair that you get to be the lucky one!! you're a good spokesperson and come across well.
I am sorry to hear you're divorced with 2 young kids, 10 and 6, makes it more difficult I'm sure but you sound so positive and strong.
Looking forward to hearing more about your journey on this amazing drug.
health and happiness
hugs sarah
__________________
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06-04-2012, 02:18 PM
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#19
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Re: TDM-1 in the news
Fern, I too have posted the Video on my FB page. Your journey and current status speak so well to the efficacy of TDM-1. Hopefully with such press the powers that be will make the drug available to all who need it.
Best wishes for continuing on this path!
Marcia
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06-04-2012, 05:02 PM
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#20
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Senior Member
Join Date: Jan 2010
Location: Thousand Oaks, California.
Posts: 199
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Re: TDM-1 in the news
Thank you so much for all your kind words. I said that it is not "fair that I get to be the lucky one" because this drug needs to be approved asap, so that all our her2+ sisters and brothers can benefit. I also said it, because with a her2+ cancer, we have more targeted treatments than other cancers, and I look forward to others with different types of cancers being as lucky as we are, in terms of treatment options.
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.
Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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