HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 11-25-2010, 12:09 PM   #1
michka
Senior Member
 
michka's Avatar
 
Join Date: Feb 2007
Location: Paris, France
Posts: 858
Unhappy Bad MRI.Liver Met

The RMI confirmed a 18mm met in the liver.
I am so devasted. I keep crying. I knew my neo adjuvant chemo did not work well, especially the 12 weeks of Taxol+Herceptin, so I was at high risk but I was stupidly hoping that after more 4 years and 4 months after discovering the cancer and 3 years and 10 months after mastectomy I was on a good path. But I wasn't.
Now what? A long agony? Is there any stage 4 with liver mets who could give me a good story? Sorry for being so depressed but the first treatments left my body so broken down and I have so many permanent pains that I do not feel like fighting. You are the only "friends" I can really "talk" to. I know you understand.
I haven't seen my onc yet.
As my brain is not working if someone could indicate how to find the threads that speak about liver mets, I would really appreciate. Love to all.
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
michka is offline   Reply With Quote
Old 11-25-2010, 03:04 PM   #2
Lien
Senior Member
 
Lien's Avatar
 
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
Re: Bad MRI.Liver Met

Oh Michka, I'm so sorry. Ofcourse you are devastated and not able to think. This is a shock and it will take time to absorb it. Having said that, I know at least two people who were diagnosed with liver mets who returned to NED status and stayed there for years. One of them over 12 years and still going strong. I'm sure you will get a lot of info from others on this site. There is still a lot you can do.

Hang in there!

Hugs

Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
Lien is offline   Reply With Quote
Old 11-25-2010, 03:20 PM   #3
tricia keegan
Senior Member
 
tricia keegan's Avatar
 
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: Bad MRI.Liver Met

Michka,

I'm so sorry, and I also know a couple of people who overcame this so please don't lose heart. Avastin is known to have a good response with liver mets too , searched this and found some info Rich had posted and hope it helps.
http://her2support.org/vbulletin/sho...ight=lung+mets

Stay strong as there's every chance you'll beat this 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!
tricia keegan is offline   Reply With Quote
Old 11-25-2010, 03:44 PM   #4
Delaney
Senior Member
 
Join Date: May 2010
Location: Ireland
Posts: 271
Smile Re: Bad MRI.Liver Met

Michka,
I dont have liver mets but I am stage 4 and it took a good while to adjust to that, I still have bad days. But, I saw my oncologist last week and she told me that the liver and the lungs respond best to chemotherapy. So, there is hope and there are a lot of people on this site who have survived a long time with good quality of life with liver mets. I have just got the book 'Beating Cancer with Nutrition' by Patrick Quillan and its very informative, you might check it out. In the meantime get support wherever you can, especially here, and I wish you all the best with your treatment.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
Delaney is offline   Reply With Quote
Old 11-25-2010, 03:44 PM   #5
Chelee
Senior Member
 
Chelee's Avatar
 
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
Re: Bad MRI.Liver Met

Michka,
Believe me...I so understand how your feeling...we "get it"! There are several ladies on this board that fought liver mets and won the battle. One member you can look up is "mamacze" (Kim). She was stage IV with liver and lung mets in 2004...she was put on Navelbine/Herceptin and got back to NED. She is being maintained on Herceptin alone and still NED. Then there is Chrisy which had liver mets and enrolled into the T-DM1 trial over 2 1/2 yrs ago and she is still NED and doing well...I'm sure she will chime in when she reads this. I'm no expert in this area but I would think you could even hit it with CyberKnife? Hang in there...you have some good options to go after this and put it all behind you. We are here for you. Hang in there.

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
Chelee is offline   Reply With Quote
Old 11-25-2010, 06:00 PM   #6
Lauriesh
Senior Member
 
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
Re: Bad MRI.Liver Met

Hi Michka,

I am in a very similar place to you. I was 5 years and 4 months from my original diagnosis, when I was diagnosed with liver mets this July. I have 2 lesions , with the largest being 11 cm.

I am 42, with 3 kids and feel like 4 months later, I am still in shock. I started chemo -TCH- Taxotere, Carboplatin and Herceptin and have had some regression. ( I will have another ct at the end of Dec)

I am also looking into targeted therapies, such as laser ablation, etc. I am going to Mayo Clinic in Jan. to discuss my options.

As others have said, there are many women living with liver mets for years. It gives me a lot of hope that we can be like them, one day NED.

Take care

Laurie
Lauriesh is offline   Reply With Quote
Old 11-25-2010, 06:25 PM   #7
chrisy
Senior Member
 
chrisy's Avatar
 
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Re: Bad MRI.Liver Met

michka,
I am not at home right now and have a very poor internet connection where I am. So I haven't been able to find any of the threads on liver mets. But I wanted to respond to you. I have been on the bad news end of scans myself. so I know this news is overwhelming. go ahead and cry but try not to despair.

I can tell you, there are numerous threads here on the issue of liver mets - probably because there are a lot of folks who deal with that issue, and are discussing the many treatment options out there. My point being, there are a lot of people LIVING with liver mets (me being one of them)

The game has changed for you - from hoping (not stupidly, hope is never stupid) the cancer was gone forever, to dealing with a different situation. While stage IV cancer is still not considered curable, it is treatable and can sometimes be managed very well over an extended period of time. And there is much research, including her2 targeted approaches that are really encouraging.

You didn't mention specifically what the MRI revealed - but if you are talking about a single lesion of that size, you may have several good options for local treatment (resection, RFA, cryoablation, etc) that would remove or destroy the met. Usually people back this up with a systemic therapy but many have had great success - some even with curative success - with these options.
Whether you would be a good candidate for these type of treatments depends on the size and location of the lesion but you should definitely investigate these options.

There are also systemic therapies which can be very effective.

Sorry you are having to face this. I just wanted to offer a bit of encouragement that it can be done - that you can do it. Do not lose heart.

chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
chrisy is offline   Reply With Quote
Old 11-26-2010, 01:16 AM   #8
michka
Senior Member
 
michka's Avatar
 
Join Date: Feb 2007
Location: Paris, France
Posts: 858
Unhappy Re: Bad MRI.Liver Met

Thank you so much for your answers.
Laurie, I remember your post. I felt so sad for you because you were over 5 years and here I am now.
I am seeing my onc this afternoon to discuss how to take this tumor out. Yes Chrisy, there is "only" one. If the tumor is eligible for cryoablation or RFA do you think it is better than a resection? I don't know much about the use of these technics for the liver but I would prefer. It seems an easier procedure. But is it? I read Rich's thread but it is mostly about lung mets.
Another question: I remember that it is wise to have the met analyzed to see if it has the same characteristics as the original BC. If I use RFA or cryoablation I will never know? Is it dangerous to do a biopsy? I read it could be if the tumor is highly vascular.
I would like to be able to discuss with my onc with a minimum of knowledge.
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
michka is offline   Reply With Quote
Old 11-26-2010, 02:04 AM   #9
Trish
Senior Member
 
Trish's Avatar
 
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
Re: Bad MRI.Liver Met

Sounds like you have some really good options available. Of course you are upset. It's always the transitions that are hardest. You had good reason to hope you were cured of breast cancer but now you have found out you have a chronic condition. It takes time to adjust to the new reality, but I'm sure you will once your treatment begins. I didn't have the cryo-ablation option available to me and I can't access TDM-1 yet. Never the less I am still feeling well and enjoying life as much, if not more than ever 4 years after liver met diagnosis.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
Trish is offline   Reply With Quote
Old 11-26-2010, 07:29 AM   #10
Joan M
Senior Member
 
Joan M's Avatar
 
Join Date: Oct 2007
Posts: 1,851
Re: Bad MRI.Liver Met

Micha,

I relate to how you're feeling about the liver met. It's devastating when the cancer spreads. I went about three years with early stage bc, which was a good sign. And your going four years is better than that. There are many women living with mets and managing them. Thankfully, this met was caught early, thanks to follow up.

I had a lung RFA and would agree with Chrissy that a liver RFA or cryoablation is definitely an option, especially with a small lesion.

Since you're considering this option, it's important to speak with an interventional radiologist who is the expert on whether RFA or cryoablation can be performed. Also, a biopsy should be done to rule out liver cancer. I had a lung biopsy to determine whether I might have had lung cancer since there was only one nodule and I'm a former smoker. The biopsy would be put to all the same tests as a breast nodule, including HER2. But make sure it's a HER2 test. My lung nodule was give an EGFR test, which was a mistake.

I will PM you with who you can contact in the states for a recommendation if you want to consult with an interventional radiologist in France.

Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
Joan M is offline   Reply With Quote
Old 11-26-2010, 02:16 PM   #11
Emelie B
Senior Member
 
Emelie B's Avatar
 
Join Date: Jan 2010
Posts: 170
Re: Bad MRI.Liver Met

Michka,
I know how you feel too, only when I recurred it was in my liver, lungs, lymph nodes and bones, but here I am 10 months out from diagnosis and I am so glad to say I am NED.
I did weekly Taxol, Herceptin and Zometa for 12 weeks then just Herceptin and Zometa, which is ongoing.
Hang in there and you will make it through this.
I know Lori R. has a lot of experience with liver mets and she will probably contact you when she gets home from a trip back East.
I understand the sadness and fear you are feeling, and I wish I could say that will go away, but for me it comes and goes, yet I am able to have a great time with my friends and family doing what I love to do.
I will be thinking of you and saying an extra special prayer tonight.
Be kind to yourself,
Emelie
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
Emelie B is offline   Reply With Quote
Old 11-26-2010, 03:56 PM   #12
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: Bad MRI.Liver Met

Hi, Michka,
I have liver mets. too. I was diagnosed at Stage IV. There are quite a few people here who will influence your positive side because there are "success" stories here. And the liver is one organ that regenerates. You have a lot of support and encouragement here and you won't give up. Everyone has bad days, even the cancer-free population. Be kind to yourself, have the bad day, and wait for the next. I know you will rise to the occasion!
This week I've been on Prednisone for a different condition. The drug was making me so weepy and pessimistic, I had a few bad days myself. Tomorrow, you will get up and feel different. I'm sure of it!
Love
__________________
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.
KDR is offline   Reply With Quote
Old 11-26-2010, 06:47 PM   #13
PatE
Senior Member
 
Join Date: May 2010
Posts: 41
Re: Bad MRI.Liver Met

Hi,
I also had liver mets, one 2cm lesion which was treated with Cyberknife - 3 treatments about 45 minutes each. I felt great, no side effects whatsoever. My pet scans show that my liver is clear, I was treated in August of 08. I have pet scans every three months and the last one (August 2010) didn't even mention my liver other than to say normal activity along with my other organs.
Please know there are a lot of women living very well with a stage IV diagnosis. Do your research on all the options available before you make any decisions, Cyberknife has a board that oncs answer question from patients you may want to try that. There was no interruption to my life, no one knew I was having treatment unless I told them. Please email me if you have any questions.
Best of Luck, hang in there!
Pat
PatE is offline   Reply With Quote
Old 11-26-2010, 10:37 PM   #14
Paty
Senior Member
 
Paty's Avatar
 
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
Re: Bad MRI.Liver Met

Michka,

I am so sorry to hear what you are facing, I can immagine how you feel. I do not have any advice, but wanted to let you know that I will be praying for you and that I am sure that you will find the treatment you need, France is a country with great medical resources. Keep hanging there Michka, remember BC is more like a chronic disease nowadays. Je t'embrasse cherie,

Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
Paty is offline   Reply With Quote
Old 11-27-2010, 01:44 AM   #15
michka
Senior Member
 
michka's Avatar
 
Join Date: Feb 2007
Location: Paris, France
Posts: 858
Re: Bad MRI.Liver Met

I am investigating all the options for ablation and I read somewhere that Cyberknife is not the best choice for the liver because radiation stops the liver from regenerating. Can someone confirm? It seems such an easy and promising procedure and it worked for some here. If Cyberknife is out that leaves resection, cryosurgery or RFA. My onc thinks it can be taken out by coelioscopy and that it would allow to have a good biopsy. It still has to be confirmed that the location of the tumor is attainable that way. Can I be sure they take everything out with a coelioscopy? is this procedure risky? I am going to consult also for RFA. Joan sent me a good address.
I am trying to understand because when you go in to see the doctors in France they only answer if you ask very precise questions.

I thank you for encouraging me and trying to keep my head out of the water. It is so difficult. I want to wake up from this nightmare. I am not strong. I am so down knowing Herceptin does not work for me. I am trying to think about our beautiful AndyBB.
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
michka is offline   Reply With Quote
Old 11-27-2010, 04:40 AM   #16
Ellie F
Senior Member
 
Join Date: Feb 2009
Posts: 1,526
Re: Bad MRI.Liver Met

Hi Michka
Just wanted to say I am so sorry you are having to deal with this but I know you will get all the right answers from the women here on the board. Deciding which treatment to have is agonising and in the end I guess you have to just go with what feels right for you when you have considered the options.
Please try to stay strong and remember that this journey is a marathon not a sprint!

Sending positive thoughts across the channel.

Ellie
Ellie F is offline   Reply With Quote
Old 11-27-2010, 06:28 AM   #17
Yorkiegirl
Senior Member
 
Yorkiegirl's Avatar
 
Join Date: Oct 2005
Posts: 823
Re: Bad MRI.Liver Met

Michka, just want you to know prayers will continue for you. I'm sorry you have to deal with this.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
Yorkiegirl is offline   Reply With Quote
Old 11-27-2010, 08:31 AM   #18
Mary L
Senior Member
 
Mary L's Avatar
 
Join Date: Nov 2010
Location: PA
Posts: 297
Re: Bad MRI.Liver Met

Dear Michka, You are in my prayers. I'm so sorry you had to have this happen. I always enjoy your happy messages. Best wishes for a quick recovery. Mary L
__________________
Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
Mary L is offline   Reply With Quote
Old 11-27-2010, 09:38 AM   #19
Pam P
Senior Member
 
Pam P's Avatar
 
Join Date: Sep 2005
Location: MN
Posts: 731
Re: Bad MRI.Liver Met

Michka - I understand your fear and panic and wish I had a cure for that right after a cure for cancer. Lots of positive liver mets stories here on this site - I hope that gives you hope and strength. We'll be waiting to hear what tx options you choose and hopefully the 1st one will bring you to NED. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
Pam P is offline   Reply With Quote
Old 11-27-2010, 12:31 PM   #20
Lori R
Senior Member
 
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
Re: Bad MRI.Liver Met

Dear Michka,
I am so sorry to hear that you must deal with a liver met. We all understand how devastating the news is that the cancer has returned. It does take time to process the news, grieve and then move forward. You didn't give yourself enough credit because I can tell that you are performing all the research to be your best advocate.

I am 3+ years living VERY VERY fully with a liver met. I chose to have cryoablation. The interventional radiologist used to perform Radio Frequency Ablation (RFA), but felt that using freezing allowed him to increase his precision as to the areas he was destroying. I wrote a very detailed explanation of my first treatment, so I'll find the thread and send it to you. Bottom line, a one day outpatient procedure and back to work on Monday. So, please don't despair.

Unfortunately, the liver met returned again so I had yet another, more aggressive cryoablation procedure. Again...one day outpatient. I am back to NED!!!! YEA!!!! It can be done.

Now that I have my brain back, I have a follow up with the interventional radiologist on Thursday (In 4 days). I plan to quiz him on many of the specifics....Is my liver regenerating? Can I have this procedure performed on multiple occasions? I also found a study comparing a liver resection to cryoablation to resection+cryo. The cryoablation statistically proved to be as effective as a liver resection which used to be quite invasive. I still haven't ruled out a liver resection at some point and if I chose that route I would investigate a laproscopic resection.

I hope my experience provides hope that all is not lost!!! I will also share as much factual information as I can locate.

You are lucky that you have a single met. That is a good first step.

Take care and more to follow....love and hugs, Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
Lori R is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 07:31 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter