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06-06-2013, 06:02 AM
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#1
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Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
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"Help Me"
Yesterday, we asked the doctor some hard questions and received honest answers. My next scan is on the 25th. If it shows tumor growth, I have other options, most are hard chemos, but there's only a 20-30% chance that they will work. The miracle drug Herceptin doesn't work in 30% of patients. I'm in that 30%. I most likely will try at least one more chemo but I don't look forward to the harsh side effects. The treatment (TDM1) I'm on now has been fairly easy so I pray that the scan shows it's working.
When I decide to stop all treatments, she told me that liver failure is pretty painless. I would just fall asleep, be in a coma for a couple of days, and then pass away.
Not the kind of answers I wanted, but it is what it is.
"Help me. I know Jesus loves you very much and that you deserve it, so talk to him on my account..." - Saint [Padre] Pio de Pietrelcina (1887-1968), Capuchin
__________________
...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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06-06-2013, 06:25 AM
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#2
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: "Help Me"
Penny, I understand your fears and I will be waiting for your scan results with you on the 25th hoping they will be good. Herceptin never worked for me. I had it in a neoadjuvant setting 6 years ago and then when I became metastatic. TDM1 is working for me. Nobody has explained to me why. I hope with all my heart you will have the same luck. Hugs. Michka
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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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06-06-2013, 07:23 AM
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#3
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Senior Member
Join Date: Feb 2013
Location: Lincoln, NE
Posts: 265
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Re: "Help Me"
Penny,
I am new to this site...yet I believe with you that God is Faithful, though you are feeling scared, He walking through this with you!! I'm praying with you, believing...trusting...asking that He gives you much strength, peace and wisdom...and that you feel His warmth!! HUGS!!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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06-06-2013, 07:52 AM
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#4
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: "Help Me"
herceptin never worked for long with Lorraine either, but tdm-1 sure has ! , and perjeta /herc with others . there are a lot of combos out there ! so Keep the Faith !
Praying for great scans !
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06-06-2013, 08:07 AM
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#5
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Senior Member
Join Date: Jul 2008
Posts: 186
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Re: "Help Me"
Penny, one of the Emilia trial inclusion criteria, a trial which became the basis for T-DM1 approval, required that patients had received:
"Prior treatment for breast cancer in the adjuvant, unresectable, locally advanced, or metastatic setting must include both a taxane, alone or in combination with another agent, and trastuzumab, alone or in combination with another agent."
So these participants no longer- or ever did respond to trastuzumab.
T-DM1 however for many of the Emilia trial participants showed strong and lasting signals of efficacy, with reduced toxicity. I so hope this drug will also proof to be beneficial for you.
Last edited by schoonder; 06-06-2013 at 08:09 AM..
Reason: cleanup
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06-06-2013, 01:17 PM
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#6
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: "Help Me"
Penny,
I'll pray that you have the most amazing good news from the scan after TDM1. And that you have a looooong run of shrinking mets and happy scan results like Lorraine.
I read about a lab in Greece that determines the best chemo by separating circulating tumor cells from your blood sample and then doing what Rational Therapeutics does with live tumor spheroids - checks to see which chemos are most effective at killing cancer cells.
It was written up in Defeat Cancer:
Chemotherapy Sensitivity Testing
Two patients with the same type of cancer can be sensitive to a whole different array of chemotherapeutic agents, so instead of grouping all of our patients together and giving them all the same agents, we do chemotherapy sensitivity tests. These determine the specific chemotherapy agents that their tumor cells may best respond to. There are two labs that we use for this purpose; one is in Greece, the other is in Germany. The lab in Greece is called Research Genetics Cancer Center (RGCC). Here, they extract circulating tumor cells from patients’ blood samples, culture them out, and then expose them to different chemotherapeutic agents. Results are then calculated according to the percentage of cancer cells that are killed by the agents, which may be 50 or 80 percent of a culture—or none. Then they choose the agents that the cancer cells have the highest response rate to and recommend that these be used for treatment. The labs can also provide comprehensive information on the genetic makeup of people’s cancers, which helps us determine appropriate therapies for our patients. Once we have this information, ideally, we will put together two different treatment regimens for each of our patients, with each regimen consisting of three different medications, which we alternate. The purpose of doing this is to reduce the cancer cells’ resistance to the drugs. It takes ten days for the results of the Greek test to come back. Another advantage of this test is that only a blood sample is required to do it, rather than tissue from the tumor itself, so unlike some types of chemotherapy sensitivity testing, it’s safe to use in those with metastatic disease.
I know you have reactions to many of the treatments. This may be a bit unorthodox, but it may also improve your chances beyond 20-30% that the harsher treatment would work.
I discovered it on my friend's doctor's website:
http://cancerbooksource.com/defeat-c...er-strategies/
Well nice to know liver failure is pretty painless. I'd rather that not apply to you!
Fingers crossed and direct line open to God . . . .
__________________
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
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06-06-2013, 02:18 PM
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#7
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Senior Member
Join Date: May 2010
Posts: 184
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Re: "Help Me"
Penny
Sending up some prayers for the one that works and peace in your mind to be able to relax with it. This roller coaster of treatment is rough but we are tougher. Hang in there. Hugs
Cathy
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06-06-2013, 02:41 PM
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#8
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: "Help Me"
Hi Penny
Will ask The Lord for some good news in my prayers tonight.
Hugs
Ellie
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06-06-2013, 04:24 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: "Help Me"
Penny I hope this current regime continue's to work for you but I think I'd appreciate an Onc like your's who tells it like it is and doesn't sugar coat anything. Sending good wishes and much love and really hoping this works for you.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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06-06-2013, 05:10 PM
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#10
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: "Help Me"
Penny,
I'm glad you asked the tough questions now, when it's 'safe' to hear the answers. Knowledge is always a good thing! And I know your onc is top notch. I'm also glad that you let us know that
(a) your scans on the 25th may give you great news (which is what I'm thinking will happen), and
(b) if the news isn't stellar...you still have options
Those two things, combined with your incredibly strong faith in a God who loves you personally and passionately...make me not so much worried about you, as happy to pray for good results and a peaceful heart.
I feel like you're not "borrowing trouble"...just gathering information.
It sounds to me like you're trusting that you're in good hands medically...but more importantly...the Lord has your back.
I love the Footprints metaphor...and since your legs have been so sore, I imagine one set of footprints and one set of wheelchair tracks in the sand. But, I don't think it sounds like it's time for the Lord to carry you yet.
Lifting you in prayer...as always
Sending love and light to you too...
Denise
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06-06-2013, 06:35 PM
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#11
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: "Help Me"
Penny, it's a sad reality that we sometimes have to have those days when meeting with medical teams when it's anything but easy or pleasant. But knowledge is power, and good to know how things stand. I will pray that the scan results on the 25th prove that TDM-1 works for you.
You have other options yet as well, and as is mentioned so many times on this board, 'keep the faith'.
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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06-07-2013, 04:54 AM
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#12
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Senior Member
Join Date: Jan 2013
Location: Irvine, CA (Southern CA)
Posts: 414
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Re: "Help Me"
Penney,
It seems this drug was designed for people just like you - I can only imagine how scary it is for you, but there are so many signatures from this site that can confirm that a new treatment really CAN be the bullet to reach the goal of NED. Prayers sent that you will successfully respond.
-Julie
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Julie
Live in Orange County, CA![](signaturepics/sigpic9860_1.gif)
Diagnosed with DCIS Oct. 2012
Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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06-07-2013, 10:50 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: "Help Me"
TDM1 seems to work for a lot of people that Herceptin didn't so I am hoping along with your other HER sisters that it works for you also.
hugs and love
sarah
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06-07-2013, 11:28 AM
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#14
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: "Help Me"
Penny, My prayers are going out that these new txs will work, and your scan is better. I will also pray that you keep strong. " God is with you always"
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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06-08-2013, 01:13 AM
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#15
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: "Help Me"
Dear Penny.... ((hugs)) I believe TDM1 can work miracles, and it is working one for you right now. And, if the other drugs work for a quarter of people, there is no reason to think you would not be a winner in that lottery. I do understand not wanting to do the harsh chemo again. I feel the same. We are all here praying for you and thinking of you...Those scan results are going to be all good news. Sending lots of positive energy your way.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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06-08-2013, 03:05 AM
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#16
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Senior Member
Join Date: Jul 2011
Posts: 954
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Re: "Help Me"
Thinking of you and praying for you, Penny.
Paula
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06-08-2013, 01:14 PM
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#17
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: "Help Me"
I have been on herceptin 4 years now - I can't say it doesn't work because you can't prove a negative. I have progressed and gone metastatic on it, but maybe if I didn't have it I'd be gone by now, so maybe it's slowing progression some. It isn't working perfectly but it might be helping, who knows? That's why my doctor keeps me on it.
I saw my first shrinkage on gemzar and perjeta. Gemzar is very tough on my marrow and I can only get one infusion a month now as it takes that long for my blood to recover, but it seems to be holding steady at 3 cms, and I am in prep for SBRT.
My understanding of why TDM1 works when herceptin may not is because it is herceptin along with a very powerful chemo drug. The drug, without the herceptin part, can't be given alone, it would be too toxic. But when mixed with this formulation of herceptin, it guides the chemo directly to the cancer cells and nowhere else. So it is not as hard as a regular chemo and it works better. That may be a layman's understanding, but that's what I take from what I've read.
Don't give up yet. TDM1 has worked for lots of people, and I know a woman who had bone, lung and liver mets who was in hospice, started TDM1 and got to NED! Unfortunately, it did end up going to her brain but cyberknife controlled that and I think she's on her 12th year with mets now. She was in the early trials.
And, for the record, my mother died of liver disease - she had cirrhosis and it was like your doctor described. She went into a coma and never work up. I don't think she felt any pain, except that she got esophogeal varices at one point (which was how she was diagnosed), but she also had alcoholism and so her liver was just scarred rock. I don't think that is too common with cancer patients.
But I don't think we need to go there yet. Think positive, this drug will get you NED. ![Smile](http://her2support.org/vbulletin/images/smilies/smile.gif)
__________________
http://butdoctorihatepink.com
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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06-08-2013, 02:46 PM
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#18
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: "Help Me"
Please try to keep the faith. You may have options that you or your doctor have not considered yet. Keep doing your research and don't leave any stone uncovered.
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06-12-2013, 09:01 AM
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#19
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 391
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Re: "Help Me"
Ask about paring up the Perjeta and TDM-1. Rumor from a source that I cannot give more info about says it can grab a large percentage of the 30% that Herceptin alone cannot. Also exploring a really new treatment that might go to phase 1 this month. I will PM you when I hear back from my source to see if they will include you.
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