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03-31-2010, 04:12 PM
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#1
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Senior Member
Join Date: Jun 2006
Location: Rockwall, Texas
Posts: 26
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BC to liver
Hello all,
I am curious about liver mets and anyones experience with such. IE: treatment, side effects of the cancer it self on the liver, length of time known living with this situation. I have benn dealing with metastatic breast cancer for 4 years to bone only, and today was told I had 5-6 spots show up in my liver. 3 are very small and the other 2 are 1.0 & 1.3 cm. Surgery was not an option for me I was told. We have stopped Taxol after 9 months of treatment and I am starting Tykerb tonight with herceptain. I would really like to hear opinions and experiences.
Very Sad in Rockwall, Texas tonight!
Thank you
Shonda
__________________
Shonda Gaylord
36 M 5 children 16,12,9,7 yr old twins
DX 2-06 at 33 yrs old
4-06 Bi lateral mastectomyw/ recon
5-06 Taxol/Carbo Herceptain weekly
Have Mets in bone dx'd 1 week after surgery
5-07 Implant exchange
Chemo Holiday about 1 year
started Tykerb/Xeloda 6 days (Very sick)
Started Gemzar did 2 rounds (got very sick) In hospital 3 months w/ ARDS and TTP and CMV.
1-09 Started Navelbine/Herceptain weekly
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03-31-2010, 04:17 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: BC to liver
Shonda, I have little to offer as advice, but I wanted to send my concern and love to you. I know that you have great care, but what about seeking one more opinion to give some power to your choices and decision. I send my prayers and encouragement. ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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03-31-2010, 04:43 PM
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#3
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: BC to liver
Shonda
I am so sorry that you have this recent developement....my girl friend (she's not Her2+) has been dealing with raging liver mets for almost 3 years now...she is currently on Xeloda, which has them managed...she was also on Avastin and Taxol for a while....there are options, I was on the Tykerb/Herceptin and found it easy to take...but I had chest mets and it didnt work on them....the thing to remember is each combo can do different things on different people....you are in my prayers that this new one will work.
By the way, I also have twins...girls that are soon to be 35!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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03-31-2010, 05:50 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: Rockwall, Texas
Posts: 26
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Re: BC to liver
Thank you ladies, I am going to seek a 2nd opinion at MD Anderson in Houston, Texas.
Sheila, I remember you telling me you had twins a couple of years ago. They are awesome!!
__________________
Shonda Gaylord
36 M 5 children 16,12,9,7 yr old twins
DX 2-06 at 33 yrs old
4-06 Bi lateral mastectomyw/ recon
5-06 Taxol/Carbo Herceptain weekly
Have Mets in bone dx'd 1 week after surgery
5-07 Implant exchange
Chemo Holiday about 1 year
started Tykerb/Xeloda 6 days (Very sick)
Started Gemzar did 2 rounds (got very sick) In hospital 3 months w/ ARDS and TTP and CMV.
1-09 Started Navelbine/Herceptain weekly
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03-31-2010, 06:40 PM
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#5
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: BC to liver
I have no advice on liver mets, but wanted you to know that I am thinking of you. I am very hopeful that a new combo will knock the mets out of your liver.
Hugs,
Lexi
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03-31-2010, 08:15 PM
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#6
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: BC to liver
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03-31-2010, 09:32 PM
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#7
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: BC to liver
I never had liver mets, but I have my fingers crossed for you. I hope the Herceptin and Tykerb helps.
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03-31-2010, 09:45 PM
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#8
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: BC to liver
Just wanted to wish you the very best with your new treatment and I am keeping you in my prayers.
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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04-01-2010, 01:36 AM
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#9
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: BC to liver
Wishing you the very best. Please let us know how you go on with your second opinion.
Lots of positive thoughts coming your way.
Ellie
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04-01-2010, 06:50 AM
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#10
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Senior Member
Join Date: Dec 2006
Posts: 415
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Re: BC to liver
Hi Shonda~
Damn this disease. I'm so sorry.
I'm glad you already have another treatment plan in place.
I have been Stage IV with liver mets for ~8yrs. Ever since my primary diagnosis. At one point my liver was riddled with lesions-both lobes. Taxol/Herceptin got my liver all cleaned up for a year, but then dealt with a single recurrent spot in the R lobe. I ended up having a liver resection & have been NED there ever since.
I was fortunate not to have any complications, severe side effects with the mets or treatment. My liver function was normal the entire time too. I remember my doc telling me that you can function normally on just 15% of healthy liver.
Sending you positive vibes & prayers.
I hope once you get that Tykerb & Herceptin on board
it'll get to kicking those lesions into oblivion.
Hang in there & Keep the Faith~
Jessica
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04-01-2010, 07:15 AM
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#11
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: BC to liver
Shonda,
Sorry to hear that you must attend to a handful of liver mets. I am confident that you will beat these suckers back and move on with your life.
I had a liver met upon diagnosis back in 2007 and have been living a very active life. Per my signature, I was on taxotere + herceptin which knocked back the met for 1 1/2 years. When it returned I used cryosurgery to immediately zap it and then did a a full round of Abraxanne to kill any remaining cells. So far NED again. (BTW..Abraxanne for me was VERY easy....I hardly knew I was on chemo)
While surgery might not be an option, please investigate cryosurgery as an option. Your onc will need to refer you to an interventional radiologist. The interventional radiologist that I went to indicated that the procedure could be performed in instances where there are multiple tumors. So....don't count yourself out.
There have been recent articles posted here about cryosurgery triggering an immune response. The focus was on using cryosurgery to eliminate the primary tumor in the breast but....always the optimist, I am hoping that it has a similar response when used in the liver. The procedure was an outpatient procedure with minimal down time (1 day).
Bottom line though......with a liver met I've had no pain, fatigue ...anything. The most difficult part is the uncertainty and of course the treatments.
Wishing you ALL the best and encourage you to consider this option.
Love 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)
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04-02-2010, 03:14 PM
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#12
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Senior Member
Join Date: Jun 2006
Location: Rockwall, Texas
Posts: 26
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Re: BC to liver
Jessica... I am assuming that the resection was surgery to remove the lobe?
Lori... Can you tell me more about cryosurgery? I am researching that in a second, but is it ever an option for multiple or only a single?
Thank you all so much for the inspiring words of encouragement.
Shonda
__________________
Shonda Gaylord
36 M 5 children 16,12,9,7 yr old twins
DX 2-06 at 33 yrs old
4-06 Bi lateral mastectomyw/ recon
5-06 Taxol/Carbo Herceptain weekly
Have Mets in bone dx'd 1 week after surgery
5-07 Implant exchange
Chemo Holiday about 1 year
started Tykerb/Xeloda 6 days (Very sick)
Started Gemzar did 2 rounds (got very sick) In hospital 3 months w/ ARDS and TTP and CMV.
1-09 Started Navelbine/Herceptain weekly
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04-03-2010, 05:10 PM
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#13
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Senior Member
Join Date: Dec 2006
Posts: 415
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Re: BC to liver
Yes, they removed the R lobe of my liver - which is 55% of the organ.As I mentioned, I've been NED in that lobe ever since.We
opted for this procedure since I'd had a history of extensive mets, though it was just one stubborn one we had our eye on.
Had there been more than one met, my surgeon would have RFA'd the others and removed the lobe.
I have unfortunately been battling other mets in the nodes in my belly, and 2 in the L lobe of my liver. But this Ixempra/Herceptin combo seems to really be doing the trick, so I'm keeping fingers crossed for some good, REALLY GOOD news, when I have my next scans in a couple of weeks.
Wishing for great options & treatment response for you.
Keep us posted~
Jml
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04-04-2010, 11:13 AM
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#14
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: BC to liver
Shonda,
Sorry for the delayed response.....Out enjoying spring skiing in here in Colorado.
I wrote a lengthy overview of my cryosurgery procedure. I'll put everyone to sleep if I repeat it here. I found it by going to "Search", selected search on thread and entered cryosurgery. It pulled up my thread titled "cryosurgery procedure".
I am glad I wrote that up because I already forgot some of the details.
See if you can find it...if not, let me know and I'll cut and past into a lengthy private message for you.
Please....keep us posted as it seems every year there are new and different options.
JML.....thank you for posting regarding the liver resection. It is good to know that that remains yet another option.
__________________
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)
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04-04-2010, 12:19 PM
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#15
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: BC to liver
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04-04-2010, 08:30 PM
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#16
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Senior Member
Join Date: Jun 2006
Location: Rockwall, Texas
Posts: 26
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Re: BC to liver
Thank you Lori for the information and Rich for the link. I am on it tomorrow when I wake up.
Good Night
Shonda
__________________
Shonda Gaylord
36 M 5 children 16,12,9,7 yr old twins
DX 2-06 at 33 yrs old
4-06 Bi lateral mastectomyw/ recon
5-06 Taxol/Carbo Herceptain weekly
Have Mets in bone dx'd 1 week after surgery
5-07 Implant exchange
Chemo Holiday about 1 year
started Tykerb/Xeloda 6 days (Very sick)
Started Gemzar did 2 rounds (got very sick) In hospital 3 months w/ ARDS and TTP and CMV.
1-09 Started Navelbine/Herceptain weekly
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04-05-2010, 05:40 PM
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#17
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Re: BC to liver
Just wanted to say that I've had very good luck on herceptin, tykerb, avastin & zometa. By luck I mean stable.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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04-12-2010, 08:05 PM
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#18
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: BC to liver
Shonda,
Sorry to hear about the bc spreading to your liver.
I would also suggest that you also ask MD Anderson about radiofrequency ablation. While cryoablation freezes tumors, RFA burns them with radio waves (not radiation). RFA of the liver is very common and has been around for awhile. Both procedures are done by interventional radiologists, and it would be best to find out directly from them whether you are a candidate. I had RFA of the lung in August 2008.
Also, unlike chemo, these procedures do not discriminate. They're worth checking into.
In my case, I had a rare problem in that a fungus grew in the cavity created by the probe, but this would not be the case with a liver ablation (hot or cold). Last July I had to have lung surgery to get rid of the fungus, but there was no cancer in the pathology report. Two weeks ago I had scans of the lungs, abdomen and pelvis and all were clean, which means there was still no cancer in the lung.
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 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
Last edited by Joan M; 04-12-2010 at 08:08 PM..
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