 |
|
05-03-2010, 10:19 AM
|
#1
|
|
Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
|
It Never Ends
I have to have a cat scan because my liver enzymes won't go down. Of course, I am terrified that I have a met. Intellectually, I know I was early Stage 1, Node negative, and that I treated this disease aggressively. That doesn't help much with the fear. I think Femara is causing my liver enzymes to rise. I've been on it two years (after 2 years on arimidex) and I don't think my liver likes it. For the month of May I am going to take Femara every other day instead of every day. I am tired of being a guinea pig.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
|
|
|
|
05-03-2010, 10:25 AM
|
#2
|
|
Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
|
Re: It Never Ends
Hi MJO,
I think we can all relate to that terrifying fear of mets. It is exhausting and although on most days I am fine but just a little pimple in the wrong place can make me lose sleep for days.
I pray that your fears are soon put to rest and your scans come back clean. Sending lots of positive thoughts and hugs.
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
|
|
|
|
|
05-03-2010, 12:08 PM
|
#3
|
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
Re: It Never Ends
Hi MJO...sorry you have to go through this...cancer sure robs us of our innocence, eh? Never again will a hangnail be just a hangnail...Hope everything turns out OK. I am nearing my end of 5 years arimidex and am wondering what my onc. will recommend. I know what you mean about the guinea pig feeling, although without us guinea pigs we wouldn't be where we are today!!! Best to you!! XO Suzan
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
|
|
|
|
|
05-04-2010, 11:20 AM
|
#4
|
|
Senior Member
Join Date: Feb 2009
Location: Canada
Posts: 128
|
Re: It Never Ends
My liver enzymes are often high. They can be high for all sorts of reasons....surgery, taking Tylenol, just the way you are made, etc.....nobody seems concerned about my levels which are way higher than normal but have come down quite a bit since I have completed surgeries, bc treatments, etc. They did an ultrasound of my upper abdominal area and found a gallbladder cyst which they are watching and I am okay with watching after the initial....no, not something else is wrong feelings. Take care but know we are all in the same boat as you, anxious to begin with but relieved after the tests are done, part of this journey, don't you think. All will be well.
__________________
12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced
I have heard there are troubles of more than one kind
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
|
|
|
|
|
05-04-2010, 11:35 AM
|
#5
|
|
Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
|
Re: It Never Ends
Mjo,
I understand your initial fear...but let me ask you -
do you have any other symtoms? Otherwise you are feeling well? No pain, no change in color of your eyes (the whites)...
It is not unheard of for the liver enzimes to be elevates due to the AI - since it lowers the estrogen produced in the adrenal glands.
This could be one reason for the higher level Not Cancer.
Also, how is your sugar levels?
How is your weight?
Have you been drinking a bit of the vino?
Many reasons for the higher levels.
I am showing you all the other reasons for the higher levels. Hopefully all will be corrected. Make sure you tell your onc. you are cutting back on the Femara.
Sending you positive energy....and love.
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
|
|
|
|
|
05-04-2010, 11:47 AM
|
#6
|
|
Senior Member
Join Date: Mar 2009
Posts: 508
|
Re: It Never Ends
Hi MJo. I hope that you don't have a long wait until you get your CT results back. The anxiety surrounding the wait for reports after scans is the "pits". Sending along my very best wishes and a prayer.
Barb A.
|
|
|
|
|
05-04-2010, 02:13 PM
|
#7
|
|
Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
|
Re: It Never Ends
Mjo,
I just had a lot of scans for bone mets which were clear but still have the pain so the worry continue's.
I can relate and know what you're going through and hope the ct results are good and gives you peace of mind 
__________________
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!
|
|
|
|
|
05-04-2010, 02:20 PM
|
#8
|
|
Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
|
Re: It Never Ends
Thank you to all my dear sisters. Just for today, Xanax is this girl's best friend. I trust all will be well.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
|
|
|
|
|
05-05-2010, 06:31 PM
|
#9
|
|
Senior Member
Join Date: Oct 2007
Posts: 1,851
|
Re: It Never Ends
MJo,
I'm praying that all will be okay. Perhaps the Femara and other meds you're taking are elevating your liver enzymes.
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!!
|
|
|
|
|
05-05-2010, 10:09 PM
|
#10
|
|
Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
|
Re: It Never Ends
In my prayers,MJo!
Hugs,Marcia
|
|
|
|
|
05-06-2010, 04:59 AM
|
#11
|
|
Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
|
Re: It Never Ends
MJO,
I am so sorry that your liver enzymes are causing you concern.
You are doing the right thing to be very cautious and get it checked out. Underscore...very cautious. I agree with others that we are on powerful drugs and sometimes our bodies send us signals that they are tired and have had enough for a while.
Others have posted about supplements that can help cleanze the liver. So, when you meet with your Onc. you might want to ask him about alternatives. (Milk Thistle comes to mind)
Please let us know the results......thinking of you....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)
|
|
|
|
|
05-06-2010, 06:04 AM
|
#12
|
|
Senior Member
Join Date: Jun 2009
Posts: 343
|
Re: It Never Ends
Mjo,
Don't know if you read my post but I can totally relate to what you are going through. Just wanted to let you know I'm thinking about you and wishing for good results!
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
|
|
|
|
|
05-06-2010, 02:04 PM
|
#13
|
|
Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
|
Re: It Never Ends
DOn't have my results yet, but boy oh boy, that CAT scan was something. I've had an ultrasound and a CAT of my chest. This was something else...I got the barium down without puking, but didn't realize I was going to get a dye injection. I haven't had an IV in my hand since my last Herceptin treatment. I had the mother of all hot flashes when that dye hit my veins and started hyperventilating. I should have known to ask my sisters here what to expect from a abdomen and pelvic CAT. I thought I would jump on and off the table, sort of like radiation. LOL
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
|
|
|
|
|
05-06-2010, 06:42 PM
|
#14
|
|
Senior Member
Join Date: Jun 2009
Posts: 343
|
Re: It Never Ends
I'm glad you posted this. I didn't know they did all that either. I'm having a CT tomorrow of chest, abdomen and pelvis. At least I won't be surprised!
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
|
|
|
|
|
05-06-2010, 07:30 PM
|
#15
|
|
Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
|
Re: It Never Ends
MJo,
Milk thistle and avoid Tylenol at all costs. Nothing pops up your liver enzymes like good ole' Tylenol!
Never knew about the CT flush. I am glad it's behind you. Let us know. Praying for the best, but got a good feeling on this one!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
|
|
|
|
|
05-08-2010, 04:47 PM
|
#16
|
|
Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
|
Re: It Never Ends
My scan was fine, except for small gallstones. This experience shook me up. It's hard to explain why. I wondered why the doctor wanted something as intense as a CAT scan. WHen the nurse called me with the results, she said "It's not cancer." My first thought was, "Of course it's not cancer." I think I was beginning to feel safe... kind of like the way I thought pre-BC. This reminded me that I am still vulnerable. I'm rambling, but I'm trying to figure out what just happened. I wonder how vulnerable I am , as an early stage Her2 pos. woman who had aggressive treatment. I guess the research isn't there yet. Maybe the doctor is watching me carefully because my father and his mother had gastrointestinal cancers. What is strange is that my co-worker and I were diagnosed at the same time, and her Her2 pos tumor was larger than mine. We went through treatment together and we have the same onc, but she's not getting as many tests as I am. I guess I should ask the onc why. Or maybe I dont' want to know. Thanks for letting me ramble on
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
|
|
|
|
|
05-09-2010, 08:57 PM
|
#17
|
|
Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
|
Re: It Never Ends
I'm so glad to read your good news!
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
|
|
|
|
|
05-10-2010, 08:36 AM
|
#18
|
|
Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
|
Re: It Never Ends
So happy to hear your good news, MJo! Perhaps your onc is just extra proactive?? But going through these tests does take a toll on us, emotionally and physically. Not sure what is the right approach...
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
|
|
|
|
|
05-10-2010, 07:15 PM
|
#19
|
|
Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
|
Re: It Never Ends
Great news MJo... it's always something, and it never ends...
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
|
|
|
|
|
05-11-2010, 06:33 AM
|
#20
|
|
Senior Member
Join Date: Sep 2005
Posts: 208
|
Re: It Never Ends
Oh am happy to hear of your good test results, but understand how you are feeling. It is very confusing.
Now is the time to bask in the relief, and have some fun. Treat yourself to something new.
Big ole hugs,
Diane
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 11:53 AM.
|
Linear Mode
