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09-21-2013, 09:55 AM
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#1
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Liver Mets
This is for anyone just diagnosed with liver mets who's new to this board. On the home page there's information about liver mets that is very dismal and discouraging. I think it is probably old information, predating the newer, better treatments.
I was diagnosed with liver mets in May, 2011. They are healed--my liver's doing pretty well (except for some extra work it has to do to process Kadcyla). My oncologist says that, in her experience, once a metastasis site is healed it stays healed. I have some other areas of concern (lungs, chest, spine) but, again, the drugs are controlling them and, in most cases, beating them back.
I just want you to know it's not as grim as some things you've read (including on our home page) might lead you to believe.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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09-21-2013, 11:16 AM
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#2
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Senior Member
Join Date: May 2011
Posts: 137
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Re: Liver Mets
So glad you are taking the time to update this info Amy. My two liver mets were completely wiped out after just 3 treatments of Kadcyla back in March of 2011. I still however have not found out if in arm two of the trial I was on, I received Perjeta or Placebo and we are still working on getting a solid answer to that.
But either way, I too, benefited greatly from TDM1 and pray others see we are proof that better treatments are available and working! Thanks for posting Amy- I learn so much from you and read often.
__________________
3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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09-21-2013, 03:41 PM
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#3
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Liver Mets
Vicky,
It's good to hear from you. Thanks for your comments and for the update.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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09-21-2013, 09:38 PM
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#4
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Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
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Re: Liver Mets
Thank the Lord for your great results! (both of you)
:-) 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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10-04-2013, 04:44 PM
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#5
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Liver Mets
I was diagnosed in 2009, and I'm doing well too. I had a liver resection, a microwave ablation and SBRT, as well as all the drugs listed in my signature. They aren't going to be able to say "It's gone" with me as there is a lot of scarring and changes that happen with these treatments that muddy the digital waters, but right now, it appears that I do not have active cancer. So far, at last PET, it has not spread anywhere but the liver either.
There is a phrase called oligometastases and it means that a few of us are diagnosed with very limited spots of metastases, which are still treatable with local methods and which are possibly curable although nobody wants to go that far with it.
The liver can take a beating and still function so there are a lot of treatments out there for us now that used to not be done before. The thinking has changed and that is good for us, we live in much better times now than a few short years ago. Let's hope the progress keeps coming and we can all post back here ten years from now.
__________________
 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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10-04-2013, 07:39 PM
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#6
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Liver Mets
Ann,
I'm so glad to hear from you, and to get such a positive report!
Let's make a date to post an update in 2023.
Amy
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10-04-2013, 07:52 PM
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#7
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Liver Mets
I am so thrilled to see uplifting news from you all!
We sure have come a long way, baby!
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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10-04-2013, 08:48 PM
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#8
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Liver Mets
Amy, I meant to thank you before for this positive thread - so thanks! My single liver met and couple of lung mets are stable still after finishing last round of chemo in June. I'm coming up to six years since I received my Stage IV diagnosis.
Ann, great to hear your update.
Cheers Marie x
__________________
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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10-05-2013, 05:16 AM
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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: Liver Mets
Amy so pleased to know you're doing well and I'm sure any one diagnosed with liver mets will find your post inspiring too.
__________________
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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10-05-2013, 03:06 PM
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#10
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Senior Member
Join Date: Apr 2012
Posts: 183
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Re: Liver Mets
Hello all,
I, too, was diagnosed with Stage IV breast cancer with a solitary liver met, two years ago this month. I have been on Perjeta and Herceptin since August 1, 2012 and have been doing good thus far. I work fulltime, exercise, travel out of the country, and my husband and I bought our dream home this summer. I think I have been pretty lucky as side effects have been minimal and I have been able to go pretty much what I have always done. Just need to be in bed at a decent hour these days. That, and the vaginal dryness sucks. But hey, I am almost 51 years old.
Thanks, Amy, for posting this. I always appreciate your posts and enjoy your blog. The medical community is producing new technology and drugs at, in terms of the medical community, at a very fast pace. Stats will be very different 10 years from now and us current stage IV people may just be the trendsetters talked about. If anyone would like to PM please feel free to do so.
Take care,
Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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11-01-2013, 02:35 PM
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#11
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Member
Join Date: Jun 2013
Posts: 10
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Re: Liver Mets
Thanks Amy, I have been paralyzed by my stage IV liver mets diagnosis in Dec/12. Jo
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11-01-2013, 02:38 PM
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#12
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Member
Join Date: Jun 2013
Posts: 10
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Re: Liver Mets
My onco has recommended Perjeta for me but it's not covered in Ontario so we're debating how long can we afford $3000.00 a month. 😫 Jo
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11-01-2013, 03:43 PM
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#13
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Liver Mets
Dear Jo,
So sorry you're experiencing so much difficulty, and also sorry your health plan doesn't cover Perjeta. That's sad. 
I assume you're getting Herceptin? And what else? I actually think it was Taxol and then Abraxane that kicked my liver mets to the curb (along with Herceptin).
My oncologist said she's never been unable to get a treatment for a patient that she thinks the patient should have. She says there are ways to get free or reduced price medications. Have you tried that?
Hang in there, Jo. Keep coming back.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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11-01-2013, 05:58 PM
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#14
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Member
Join Date: Jun 2013
Posts: 10
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Re: Liver Mets
Had 12 weeks of Abraxine with herceptin for life...I'm in Ontario, Canada so the Province won't fund it and we don't have a private drug plan...stressed...should I mortgage the house...is it worth it and will I live longer? Don't know what to do but I have to do something before progression. ��
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11-01-2013, 06:49 PM
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#15
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Liver Mets
Jocanuck, Perjeta is the ONLY therapy that has kept me stable and stopped liver progression in my long list. (At least, we'll find out at my next scan as I am now having rib pain that I suspect is mets - but as we know, no treatment works forever.)
But would I give up my house for it? No. I am going to die anyway and I know that, and I'm not going to leave my family destitute just staving off the inevitable. But that is a HORRIBLE thing to have to think about.
I can't imagine having to pay 3k a month for a drug, and I wouldn't' be able to do it. In the US, it was just approved for early stage patients too and that means insurance will cover it. Mine is even given off-label (without docetaxol or any chemo) and I've still never had a problem or had to pay anything.
I have three ideas about what I'd do if I was in your place and I'd do #3 first.  :
1. Make a stink with the media - a drug that is so effective that it is now used to prevent mets in early stage cancer has just this month been approved in the US and has done remarkable things for metastatic patients - and it's not approved in Ontario? You might be able to play this up in the media. Who knows, maybe through your efforts you might be able to get your government to approve it for everybody. Too bad October is over - the media is always looking for breast cancer stories in October. But Christmas is coming and you can make a story out of it and that's what you have to do to get the medias attention - make it a heart-warming story that everybody can relate to. Do you have kids? "Dying mom denied life-saving drug" is always a good story. One woman here did a YouTube video begging for Perjeta (before it was approved here) and it went viral and she got it. She was on her death bed and now she's doing well. If you want I will see if I can find it.
2. I might try to get a friend to do a "GoFundMe" account and see if you can get donations. If you have somebody who can write a compelling story and have friends who are active on social media who are willing to circulate it, it might help, especially over the holidays. You likely won't get more than a month's worth but you never know what will catch on and hey, it's a month, right? If you could get enough to cover 3 months, that can give you an idea to find out if it's working and what you have to do to continue.
3. You should definitely call Genentech. They can be very generous with what they offer patients and they may be able to provide support, a discount or something like that. http://www.gene.com/patients/patient-access
Sorry you have to fight for something so effective. Maybe you can be the one to change the laws for all in Canada, that would be quite and accomplishment and a great legacy.
Finally, herceptin and abraxane is very effective and if you haven't had progression in a year, you are on a very effective treatment. You don't need to add anything yet until you experience progression, do you? Mostly the way it works here is you are on a treatment and if it works - stable or no progression, you stay on it. Then when you do have progression, you start another treatment. So if you are stable, your meds are working so I think that means you have time to put something in place. Of course, I don't know anything about your condition or treatment, just the few things you posted here, so I apologize if I'm incorrect.
Good luck. I hope something works for you.
__________________
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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11-02-2013, 11:34 AM
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#16
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Senior Member
Join Date: Apr 2013
Location: Lakewood, WA
Posts: 56
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Re: Liver Mets
Coolbreeze, wow that is great advice!. I really appreciate your posts and the time you take to help everyone out. I have learned so much from you.
Jo, I think Genentech might also lobby specifically on your behalf. They are probably already lobbying the Canadian government to cover this drug so maybe they will have some ideas. They will help with copays too, so that might help to at least offset expenses. They have a program you can sign up for that will assist with copays for Herceptin, so maybe they have something for Perjecta as well.
Finally, Bunty: you look fabulous in that gorgeous dress! I love it!
Shirley
__________________
- Age 54 at dx (April '13) Stage 2b, grade 3
- ER+ PR+ HER+, 9 cm tumor one breast and <0.5 cm in sentinal node
- BRCA1 and 2 negative
- Neoadjuvant TCH chemo started 5-15-13 (4 rounds, 3 weeks apart)
- Unilateral Mx w/expander 8-22-13 (right side)
- 5/5 nodes Neg
- clear margins but close. Tumor at removal down to 2.2 cm.
- Radiation 6 wks starting 10-17-13.
- Herceptin every 3 weeks until 4-23-14
- DIEP/Mastopexy 10-8-14, U of WA
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11-02-2013, 06:24 PM
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#17
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Member
Join Date: Jun 2013
Posts: 10
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Re: Liver Mets
Thank you ladies for the great advice! Cool breeze I'll take door #3 please. That's my only option in fact. This is what I posted a few minutes ago on the Canadian board at BCO.
Ho ho it gets better....I emailed Laurie Kingston,from Ottawa, she blogs "not just about cancer". Nice lady we met during one of our herceptin infusions. she's same as me HER2 and has been Ned for 5 years yahoo, but last year developed brain mets which removal was successful, yahoo again! She's still Ned yippy yahoo! My reason for emailing Laurie was what I discovered...
Now....I thought yesterday was a shitty day till I was checking Ontario drug rules today ...I'm pretty sure my Onco did try to qualify me that's why he told me to beg...now the Ontario herceptin RULE...if I have progression on herceptin I NO LONGER QUALIFY for herceptin or access to Perjeta period. No herceptin mix with chemo nope..I get dropped and so does my paying for Perjeta.....wow...what a gamble...I don't gamble ������
Onco told me the price for Perjeta is $3000.00 and no compassion rate with hospital or social worker. USA price is $6000.00. 3k is a deal...Now I haven't called the company as they will tell me to send letter to Ontario as well so I'm doing Ontario first. Pharma wants patient demand and pressure put on Province. My onco told me it was WAY overpriced and NOT worth it....but...not worth it for who...my estate....
Well now, I get that the Province wants it so much cheaper, I agree, but it's my only hope to live till there's another drug or cure Ontario is repeating what it did for herceptin and hundreds of women died because Ontario wouldn't pay. Women that had money went to the US for treatment the rest died.
I'm not the only one here in Canada that's HER2, they're using herceptin/Perjeta combo as a preventative treatment for METS with early BC detection. There's lots of promise with the combo. Ontario was one of the last Provinces to fund herceptin, USA was 1998 Canada was 2005. Geez!
So, I have a gamble to make, I have a ct scan scheduled for Dec 4 and Onco appt in jan. I'll get results from my primary doc as I'll kill myself if I have to wait over a month!!! That would solve the Perjeta problem lol!
You think when you're younger that your life changing decisions are soooooo hard....wow, this decision is a game changer for me...blow the house on drugs...crap! When is a good day to pull the plug?? Jim tells me to do whatever I want, he's okay with any decision I make....so let's vote...
What am I worth...there's no guarantees with this drug but if I don't try before progression I lose this window and if it works how long can I afford to live before we have to sell the house....sucks. Xoxo Jo |
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11-02-2013, 07:37 PM
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#18
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Liver Mets
I don't understand any of that - in fact, it sounds so wrong to me that I'm starting to wonder about your oncologist.
First, while I don't have to pay as my insurance covers it, I do get copies of my drug bills and Perjeta is on the bill. Nothing on the bill has ever said $6,000.00. I think it's about $3,000 but I don't want to swear to it as I really don't pay that much attention. I'll look next time.
What's weird is your oncologist says it's overpriced and not worth it? To whom? Look at my list of drugs. Perjeta is the one that's worked for me and has allowed me to have a minimum of six months more and who knows, maybe a lot more. That was after I progressed on herceptin. All the studies show that it works very well, so I would ask him why he has the opinion he does?
Or is he saying what I was saying before - that it's not worth it to bankrupt your family to pay for it? Okay, but that isn't his decision. All he should do is give you the odds of effectiveness but you can look that up for yourself.
I don't understand your Ontario legislation but after reading what you say it needs a lot of work and maybe you could work to change that. Because, it doesn't make sense. I know nothing about your government - are you represented? Because, I'd be calling my congress people, my representatives, etc.
Why would progression on herceptin mean you aren't allowed perjeta? They aren't the same drug, they do different things.
It's like saying if you progress on one chemo that you can't have any more of any kind. One chemo kills cells in one way and another chemo kills cells in another, and that's what perjeta does. And, then there is Kadcyla, another drug that also acts on HER2 - can you have that?
It flat out makes zero sense for that to be a law, that you can't have it if you progress - it's backwards. Medically, it makes no sense.
Now, if they are saying nobody in Ontario can have any drug that costs a certain amount, than I guess you come to the US if you can afford it.
I know a woman who works for Genentech and next time I see her I'm going to see if she knows a way to help you. I might see her on the 6th.
This is why we should never let bureaucrats make medical decisions!
__________________
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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11-02-2013, 08:04 PM
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#19
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: Liver Mets
Maybe a clinical trials?
http://www.ontario.canadiancancertri...968968&lang=en
Edited to add:
This lady made a stink and got publicity. Bet she got donations too: http://www.theglobeandmail.com/life/...rticle4247220/
And, I keep adding stuff because it interested me, but it looks like Perjeta is approved in Canada: http://www.hc-sc.gc.ca/dhp-mps/prodp...9-eng.php#paat
So, not sure why you can't have it? I am missing a big piece of the puzzle, sorry. I tried to help.
__________________
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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11-02-2013, 09:31 PM
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#20
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Member
Join Date: Jun 2013
Posts: 10
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Re: Liver Mets
Hi Cool Breeze! Your a good lady to know!! That first link is for Tykerb not Perjeta. The only trial showing up in Canada now with Perjeta is for her2+ Gastro none for boobs. My onco told me last week that there wasn't anymore trials for Perjeta. Last January when I first saw him I asked about trials and he said that there wasn't any for stage 4. You are spot on about the trust thing. We never trusted him but we don't have choice options here in Ontario, it has to be proven malpractice to change onco's.
Yes that Toronto women got results because of the small size of her tumor but herceptin was already being funded by Ontario so they had to give it to her. I might start screaming as well....I really don't want to do that tho!!
Yes that last link is what gave me hope last month!!!! When I saw my Onco it was approved for USE in Ontario, the trials proved that it was wildly successful last month and my Onco told me it was NOT funded by Ontario except private drug plans. ( so that's what it is. He told me to hand write a begging letter to Ontario health Ministry and beg for compassionate use/funds.
Well it doesn't look good, I've been reading like a mad women and all they'll cover is on my death bed. And further reading on that page is where I originally read that they will withdraw herceptin if I progress. I confirmed that earlier today with Laurie Kingston another Ottawa blogger that is the same as me, liver mets, er/pr- HER2+++ Laurie had a complete response to chemo and herceptin for 5 yrs then developed brain mets last year, successful brain surgery, Continued herceptin and is still Ned for her 6th year now. I questioned her specifically regarding progression and her Onco decided that brain mets was not progression and continued with the Herception. It's a technicality that He didn't ask Ontario health about herceptin he just continued treatment...don't ask don't tell type of thing. I'm sure my onco would let me croak...
I discussed my unhappiness regarding my care with Laurie 4 months and she said he didn't sound right but I that I needed an Ontario medical ombudsman to intervene but he/onco hasn't done anything wrong...just that he's NOT that great! |
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