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Old 04-09-2008, 03:48 PM   #1
Cannon
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Question how were your liver mets originally noticed or diagnosed?

My liver tests are running high - and my onc says if we hadn't just done a PET/CT in January he would do another one (it was clear).

So, I'm wondering if people were first alerted to liver mets by liver tests being off, and if those were followed up by CT or maybe ultrasound.

Thanks for your help and sharing!
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 04-09-2008, 05:19 PM   #2
chrisy
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Hi,

I was dx with liver mets by "by accident" with a CT scan which was ordered to follow up on minor stomach problems (which had by then resolved on its own!). This was 2 months after having clean follow up exam including liver panel. I remember the doctor commenting " your liver is healthier than mine". Go figure.

So, in my case, there was no sign in my liver blood work that there was a problem. What you are seeing may have nothing to do with cancer - or it could be treatment related. The chemo you were on probably made your liver work pretty hard.

I would ask for follow up tests on the readings in question, if they are still elevated, you could ask for an ultrasound and/or scan
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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
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Old 04-09-2008, 05:25 PM   #3
Cannon
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Thanks Chrisy. I hate to worry for no reason, and I hate to think it might be something!

And I just started a new job, so I hate to take time off to see the doctor. ;-)
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 04-10-2008, 07:37 PM   #4
Lori R
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Cannon,
Isn't Chrisy helpful? I always find her input so helpful.
I wanted to let you know you have a kindred sole. Upon diagnosis in October 2007 I was diagnosed with a liver met. I JUST finished 6 cycles of Taxotere + Herceptin at the end of February 2008 and am DESPERATELY looking forward to a break. My PET scan performed in early April came back clear so I was doing the happy dance.

THEN.....I receive my blood test and my liver measurements seem to be going wild. How can my blood test results change so much in 6 weeks off of Chemo??

I'll keep you posted as to the feedback that I receive from my Onc and we can compare notes.
__________________
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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Old 04-10-2008, 09:47 PM   #5
madubois63
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I just wrote to a friend that is dealing with a relapse. She went to a chiropractor because she was experiencing back pain. Ended up going to a pc that ordered and ultrasound...found a 10 cm spot. She asked if I had any pain and I remember a deep down kind of itch and nagging pain in my shoulder blade (right side - where the mets were). I've read this "symptom" somewhere before. I didn't have any changes in my blood test. Hope this helps....
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Old 04-11-2008, 04:27 AM   #6
sarah
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Hi Maryann,
Hope you are doing well, you are a pioneer, brave and funny and I always enjoy you newsy updates. You make the worst things sound like just a voyage.
What do you mean by shoulder blade pain and liver mets or other mets? I've had severe pain in my shoulder blades and thought it was bursitis but my local doctor said it's the wrong place for that and is sending me for physical therapy.
curious
sarah
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Old 04-11-2008, 06:17 AM   #7
Becky
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Three years ago I manned the Her2 booth at the Young Survival Conference that was in Denver that year. It was then I met our Lisa (Love and Light). I asked her her story and her liver mets started as a nagging pain in her right shoulder blade (of which she thought nothing of at the time). As a few months went on, more investigation revealed mets. If you google liver problems - shoulder blade pain is mentioned over and over again as a possible symptom.
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Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
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Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
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Old 04-11-2008, 06:53 AM   #8
Gerri
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now I'm concerned

Becky,

Too weird that I should read this thread a few hours before I see my onc for a routine followup. I have been having pain in my right shoulder and was debating whether to even bring it up today - I am for sure now! My onc does not run routine tests but I feel like I should request something. I had a bone scan done in January that was clear.

Thanks in advance for your help.
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
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Old 04-11-2008, 06:36 PM   #9
Cannon
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Thanks for the responses. I'm thinking I'll push for some further exam, maybe an ultrasound. Onc and gastro are supposed to talk on Monday.

I didn't realize until I looked it up how close the liver is to the breast/chest - it's actually under the rib cage on the right side, and my cancer was right side and in the nodes, so it's geographically closer than I thought.

Anyway, I'll let you know.
__________________
Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 04-11-2008, 07:08 PM   #10
Jackie07
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Wow - y'all got me worried here now.

I woke up this morning with very bad right shoulder / left neck pain. Last night for some reason I put three pillows under my head (must have not been feeling well already.) So I figured that was the cause. By the time I got to my office, the pain was not getting any better. Also, the pain seemed to be in exactly the same places where I had felt back in 1990 - after I woke up from the 10-day semi-comatose.

So I called my doctors - Oncology, neurosurgery, neurology. Finally, the oncology nurse practioner called me back after lunch. She did not think it had anything to do with 'technesium' which I had been injected for bone scan yesterday afternoon. But she couldn't think of any other reason either. She told me to call her next Monday if I am still experiencing problems.
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Old 04-11-2008, 08:15 PM   #11
Bill
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Hi Cannon, my wife, Nicola, during a routine mammo. in early 2004, showed microcalcifications in one breast, stage 0. She had a stereotactic lumpectomy and 20-some rads. to the site. Two surgeries to check margins came back clear and all tests came back good. Then, late November, 2005, she had severe abdominal pain. We went to our GP, an excellent doctor, who ordered an ultrasound for the next morning. He said it seems like gall-bladder trouble. We went to the hospital for the ultrasound, and during the procedure, Nikki asked the technician what she saw. The tech. said she wasn't supposed to analyze that info. and give it to the patient, but we talked her into it. She said the gall-bladder definitely looked bad. Nikki then asked how her liver looked. The tech. said the liver looked good. Nikki's sister had said that gall-bladder trouble can indicate a problem with the liver. Then, the next day, they scheduled the gall-bladder removal. We called the surgeon who had done her lumpectomy and margin checks to do the procedure. I didn't know it at the time, but he was also chief surgeon of the hospital and was always voted "best in his field" in our area. The gall-bladder removal was supposed to take about an hour and a half. After 2 hours, I got worried, then after 3 and a half hours I was scared to death. Then the doc., one of the most amazing men I've ever met, walked up to me in the waiting room, with tears in his eyes, and led me into the "private room". He said he had some bad news and I said what? He put his hand on my shoulder, looked me in the eye, and said,"she's got cancer in her liver". I asked if he was sure, and he said yes he was sure, and he said, "this just doesn't happen." He went on to explain that in 20 years of surgery only one other time had he gone in for a gall-bladder removal and found cancer in the liver, and he couldn't even remember the other time. I asked how many lesions there were, and he said he didn't count them. After that day, it was just always "numerous lesions". Nikki, like Chrisy, and a few others, went from stage 0 to stage IV. Her liver biopsy showed the cancer to be breast cancer, but she never showed any cancer in her breasts, other than the DCIS in 2004. She never had any shoulder blade pain that I can recall. I'm sorry for the long-winded reply. I wasn't even going to respond, but then I thought it might help someone. But please bear in mind, Nikki's situation was an extremely rare occurence. Love, Bill
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Old 04-12-2008, 04:42 AM   #12
fullofbeans
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I too requested a CT scan and it was therefore found by "accident" too. Later I had a slight pain on the last rib. Get a scan if you are worried I should think.
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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.



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Old 04-12-2008, 05:07 AM   #13
Mary Anne in TX
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Bill, your story was riddled with love and reality. What a journey our warriors take. This has been really great information on this thread. Thank you to all who responded and shared such helpful info. Cannon, I'll be waiting to hear your results.
ma
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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
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Old 04-12-2008, 11:28 AM   #14
KellyA
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Hi there,

I hope that I can make a few people feel better. Although ANY persistent pain should always be investigated by a doctor, I did have a pretty recent bout with abdominal pain and pain that radiated around my ribs to the area around my right shoulder blade. It turned out to be my gallbladder and some other digestive issues. The pain got progressively worse and I even started running a fever. I was SURE that it was my liver, and was scared to death. My doc told me that it is very common to have issues after chemo.

Please do check out any pain that does not go away in a reasonable amount of time, but try not to assume that it is always "the worst". Hee Hee- ANYTHING seems like nothing now as long as its not cancer. They could tell me I have aliens growing inside of me, and it wouldn't bother me!

Love, Kelly
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dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

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Old 04-13-2008, 02:42 AM   #15
sarah
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wow. So what type os scan do you recommend and where?
good health to all of you and thanks for all your helpful knowledge, we learn so much from this site and get so much support from it. It helps us help our doctors keep us alive.
sarah
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