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Old 02-05-2007, 01:08 PM   #1
casabaum
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Help! Stage 4--Liver Mets

I am writing on behalf of my sister, a 41 year old female with metastatic breast cancer to both the liver and the bone.<o =""></o>

<o =""></o>My sister has rising tumor markers (CA27-29: 571), a rising bilirubin number (1.7),<o =""></o>
ALT and AST that are rising, but in the area of 180. She has tried a lot of chemo, most recently, Doxil.

Thanks to some links from this site, I found two options.Her last 3 chemo/biological treatments have done little to nothing to stop porgression and I am therefore looking at procedures directed at the liver tumors.

1) LIIT-Laser Induced Interstital Thermotherapy
2) Sirtex Microspheres

I am starting my search now to find hoospitals that might do these procedures. She lives in Dallas Texas and the closer to her the bbetter

If anyone knows of places that offer these procedures or other treatments I should be looking at, please respond.

I have lurked this sight for years, but nevber posted.

Below is a list of some of her other treatments.

Othe treatments:<o =""></o><o =""></o>

Navilbene Carboplatinum Herceptin 11/06-12/06<o =""></o>

Carbo Abraxane Avastin Herceptin 8/06-10/06<o =""></o>

Lapatininb trial (not the Xaloda arm) 6/06-8/06<o =""></o>

Avastin Herceptin carbo 3/06-6/06
<o =""></o>
<o =""></o>
carbo herceptin 9/05-12/05<o =""></o>

Thank you,

Colleen
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Old 02-05-2007, 01:17 PM   #2
StephN
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Try MD Anderson -

- in Houston. I am sure that being so close you know about this top ranked cancer center.
My thinking would be to start close to home and see what they suggest. Your sister's oncologist must know some of the docs at Anderson, and can get her an appt over there. Seems to me she needs a second opinion anyway.

Looks like she has not had Zometa or anything to help her bones. They can also perhaps do CYBERKNIFE on bone tumors.

I am surprised the way they have jumped her around from drug to drug. Are they sure that some of the "tumors" are not now scar areas? PET/CT lighting up as before?
What about the HER2 serum test? This would also have been a good way to see what the treatments are doing.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 02-05-2007, 02:31 PM   #3
Mary Anne in TX
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Here is a link to the center I go to in San Antonio.


http://www.stoh.com/
__________________
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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Old 02-05-2007, 03:48 PM   #4
casabaum
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More Info

I was in a hurry and only included her most recent treatments. The reason it seems to jump around so much is that each treatment either never worked, or stopped working. The evidence of failure over the past 6 months or so has been evident in her tumor markers, Liver function, and scans.

She is doing something for the bones--I don't remember what--I think a pill, but you are right, they are progressing too.

To date, she has not received any direct treatment to the bone lesions (i.e zapping then with radiation, cyber knife), I guess, because they were not causing symptoms, and we have been focused on the whole body treatment.

Thank you for your response and if anyone is following, please keep any thoughts or ideas coming.

<st1:GivenName>Colleen</st1:GivenName>
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Old 02-05-2007, 03:58 PM   #5
heblaj01
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Colleen,
In case you need to find other possible treatment options you may look into these sites:

http://jjco.oxfordjournals.org/cgi/c...l/29/8/390#hd9
Multiple Liver Metastases of Breast Cancer: Report of a Case Successfully Treated with Hormone-Cytokine-Chemotherapy

http://www.sciencedaily.com/releases...1024082032.htm
Precision Radiation Therapy Yields Rare Success For Liver Tumors

http://www.scienceblog.com/cms/omega...lls_10334.html
Omega-3 fatty acids inhibit growth of liver cancer cells
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Old 02-05-2007, 04:31 PM   #6
Linda
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Colleen:
A friend who had liver mets had ablation surgery at OHSU in Portland, OR. She also found a top surgeon for liver ablation at John Wayne Cancer Center in Santa Monica, CA. I'm in Oregon, so I don't know of any places closer, but the other women are probably right, MD Anderson would be the first place to look.
I send best thoughts to your sister.
Linda
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Old 02-05-2007, 05:07 PM   #7
fullofbeans
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Hi Colleen,


I am sorry to hear about your sister. I am not sure how many or how large her liver tumours.

Resection is the best option of all and is generally only offered if there are few tumors 1 or 2. ALternatively if there are several tumours: RFA (radio frequency ablation)(available in the US) or Litt (only in Germany), these treatments are quite similar.

Generally before the above treatment is given, it is required that the tumours are controlled i.e. either decreasing with chemo or stable. If they are not, as it seems to be the case for your sister then you can think of chemo-embolisation i.e. TACE or targetted radiation (the name escape me). TACE worked for me and it worked in synergy with my systemic treatment taxotere. I went from six tumours (2 more than 3cm) to 3 tumours (all less than 2 cm) which then could be zapped. I have notice that your sister did not have any taxane (taxotere or taxol) yet. These often give good results.

Good luck, don't let your sister give up, and well done for the support you bring her.

Best wishes
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 02-05-2007, 06:45 PM   #8
casabaum
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Thanks for your reply.

Resection was not possible at the time of her first liver met as it was too close to the veins--portal and vena cava.

She did have an evaluation for RFA, or like treatments with a liver specialist early on--which the doctor was willing to do at that point, we decided against it, and opted for the whole body chemo/biological option.

At this point, it is making a decision on what to do next.

This morning the Onc recommended Sorafenib mixed with cytoxan and methatrexate.

I quickly found an article on Sorafenib and didn't think the results were very promising.

I called MD Anderson, trying to get info on microspheres (direct radiation) and LITT. They referred me to a doctor in
<st2:State><st2lace>Colorado</st2lace></st2:State> on the microspheres and informed me no one in US is using LITT.

They did however, present a trial that she might just qualify for, it is chemo-emobilzation direct to the liver. The chemo is paciltaxel.

Is that a good option--Can you get chemo-emobilzation, out of trial? Is there a drug proven most successful delivered straight to the liver? How about TACE? Is that targeted radiation? Is TACE available out of trial?

She did have taxotere--once again, I did not include her whole history. In addition she has had herceptin (over a year's worth), avasitn, zeloda, abraxene, epirubicin and ...

At some point I will try to create a better history.

I see that you have done LITT. I have sent an email to a
<st3:Person><st2:PersonName><st1:title>Dr.</st1:title><st1:Sn>Mack</st1:Sn></st2:PersonName></st3:Person>--I found it on the study. Do you have good contact info for this procedure or more info. I saw the 2004 study but am interested to see results since then.

Thanks, for your help.

We are NOT GIVING UP!!!!

She has 4 girls, ages 5-12, and 6 brothers and sisters, who are not ready to see her go.

<st2:PersonName><st1:GivenName>Colleen</st1:GivenName>
<st1:Sn></st1:Sn></st2:PersonName>

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Old 02-06-2007, 02:52 AM   #9
fullofbeans
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Hi Colleen,


Chemo-embolisation and TACE are equivalent they might perhaps differ in the mode of delivery to the liver but the principle is the same. Trial for chemo-embolisation is for you to choose infunction of your circumstances. I personally had no problem with the toxicity of TACE but I know some people do not feel good for a few days. What phase of the trial is it at? Phase I looks at toxicity.

You can do RFA instead of LITT in the US.

What I do not understand is why you had to choose between sytemic treatment (whole body) and local treatment. These are not mutually exclusive I had TACE at the same as my systemic treatment. Then again I knew I could take the toxicity being young and in my first line of treatment, so you'll have to assess this for yourself and/or with your oncologist or TACE provider. the same with RFA you only have to abstain from chemo for a couple of weeks before treatments and can have treatments relatively shortly after again.

Good luck
Kx
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 02-06-2007, 09:57 AM   #10
Joy
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you know what is funny

at least to me. Is that at my last onc visit I mentioned chemoembosization-which I know I can handle-and my DR. said, "well that is fairly toxic." And in my head, I'm thinkin', " compared to WHAT?" It is all toxic -that is the point. It is definielty a logical approach to treating liver mets and I think doing systemic at the same time can be handled by a lot of us tough ones.

Let us know what unfolds and wishing you both the best.
__________________
with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 02-06-2007, 11:16 AM   #11
heblaj01
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Colleen,
Like StephN I am surprised your sister is not on monthly Zometa, to perhaps slow down bone mets & to prevent bone pain ( a recent study showed Zometa is more effective in preventing or delaying bone problems if given before pain sets in).
Like her I also think PET/CT scan (& ultrasound for the status of liver mets) might help to determine where the disease is more agressive since liver markers may be skewed by the chemo drugs.
It is too bad your sister was on the wrong arm of the Lapatinib trial: her response may have been better if she had been on the Xeloda+Lapatinib combo.
Once Lapatinib is approved her onc may judge if off label Lapatinib+Herceptin might still be useful.
An other point is to make sure that she is still HER-2 positive & the least invasive way to find out is the Bayer serum test. This would give some indirect insurance that she did not become ER+ while on Herceptin.
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Old 02-10-2007, 08:48 PM   #12
Esther
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I have the same reaction other poster have....there seems to be alot of jumps in treatment taking place at one, two and three months of treatment.

That would not be long enough to fully evaluate a treatment method, and liver enzymes and tumor markers are not accurate enough to warrant a treatment change on that alone.

As far as scans go, I would only trust a Pet/CT scan enough to make a treatment change, and even at that, differnces in angles and the way the measurements are taken could account for a lesion seeming to increase in size when in fact it has been stable or gone down in size.

I have had that happen a few times and it took some careful reconsideration and evaluating all the data to conclude that the lesion growth was not an accurate representation of the situation.
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Old 02-10-2007, 08:49 PM   #13
Esther
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I forgot to ask, how is your sister feeling otherwise? Is she having a good QOL of life otherwise?

How a person feels is also a good indicator of how well the overall treatment is going.
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Old 02-10-2007, 10:51 PM   #14
Lolly
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Colleen, I think that you've gotten excellent advice here so far; regarding repeating Lapatinib once it's approved, possibly Lapatinib/Herceptin/Xeloda would provide more synergy.
I think your advocacy for your sister is so wonderful; blessings on you and your siblings, and many prayers for sis.

<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 03-01-2007, 07:53 PM   #15
SuesSister
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I am the same situation

Dear Colleen,

My thoughts and prayers are with you and I unfortunately know all too well what you are going through.

My name is Rosie- this is my first post but these boards have been a source of inspiration and hope for years. My 45 year-old sister has suffered with stage 4 since her diagnosis in 1998 - it has been everywhere and she has gone through just about everything - most recently whole brain radiation last year and an unsuccessful clinical trial for something called DMAG this past summer at Sloan Kettering.

Basically, the Herceptin stopped working last summer and her liver mets are developing fast and furious. We were told back in November that she had only 2 weeks (her billirubin was at about 22) and that her liver tumors were not eligible for surgery. They started her on Avastin as a last hope (it is a colon cancer drug that showed some success in breast cancer mets to the liver) and within 4 weeks, her bilirubin count was under 3. It got as low as 1.6, but we found out today that it is back to 4.6 and we are just devastated.

The doctor explains that the ducts of her liver are the problem and that she has multiple blockages in the ducts. I am not sure if anyone out there has been in the same situation. Our chemo options are just about exhaused with only the hope of Tykerb. She will start on Herceptin/Taxotere tomorrow with hope that there has been enough time since she was last treated with it that it will help even for just a short while.

I just sent an e-mail to the University of Rochester here in NY about Precision Radiation - I am not sure if it could be an option, but I refuse to give up hope - I am not ready to lose her - I never will be. I am so grateful for the knowledge posted on these boards. Words really cannot describe the level of courage of the patients that post here.

I will hope and pray that we both find a treatment for our sisters.

Rosie
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