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Old 08-27-2006, 09:59 AM   #1
Cathya
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How has Serum Her2 test worked for you??

I am wondering who on the board is using the Bayer Serum Her2 test and what sort of numbers you are getting. I would like to know these in conjunction with your ER/PR status and whether you are strongly Her2+ or borderline as well as treatments.

I am waiting for my first results, am ER/PR+ and borderline. I have only been on Arimidex for the past four months but am beginning herceptin again this week on a weekly basis. I intend to get another test at least one month after starting herceptin. I'm stage 3c having finished chemo, radiation August 2005.

Thanks,

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 08-27-2006, 10:39 AM   #2
newgg
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Thanks

Thanks Cathy for this post. It is timely for me and will be very interested in the replies. Also trying to get the first her2 serum drawn and have the onc. office checking out where it can be done. Strongly HER2 pos as well as ER/PR pos. Out of chemo for 13 months before herceptin started. Have been on Arimidex since Jan. 05. Tumor marker continues to rise a point or two with each month. Also concerned about some other blood chemistry that is going slightly to the edges of normal. Jeeeezze......sometimes a little bit of knowledge is a dang dangerous thing !!! Ha....that is why I need to be here.....need a *BIG* bit of knowledge.
Hugs, Bonnie
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Old 08-27-2006, 12:16 PM   #3
Cathya
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Bonnie;

I had my Serum her2 test done at Quest Diagnostics. Results apparently take about one week as results are faxed to my onc....a bit longer for me as they are mailed to me. I also get tumor markers taken and so far so good. I think being ER/PR+ we need more than the serum test as our tumors are fed by hormones as well. I am now looking for tests to see if the arimidex is working.....these drugs are like herceptin and apparently don't work for everyone. Yes, we do need knowledge. I hope the results come in so we perhaps will see some patterns.

Best regards,

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 08-27-2006, 01:10 PM   #4
Becky
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Cathy


When I went to ASCO I saw a post about a study on Stage 4 women with bone mets only. The researcher used only an antihormonal on these women and measured response. This paper indicated that when estradiol levels went up over 20 (I will see if I have a copy of this paper to include the units of measure), this was an indication that the AI wasn't working.

I asked what she did with these women after that - she commented on Faslodex or Tamoxifen (she indicated tamox is fine for Her2+ women as long as they are also on Herceptin).

So... I come back from ASCO and have my onc run estradiol when they do the cancer marker tests. Result comes back as less than 30. So, I call my onc and ask for the exact number. Well, Quest and Labcorp's lowest reading is less than 30 (which he says is a good number - I am on Arimidex too). So, apparently, these normal labs can't measure lower (I went to a seminar that said in a postmenopausal woman, an AI can take the estradiol level to 1 or 2). So, according to a normal lab, my estradiol level is as low as they can measure it.

Ask your onc about this. Estradiol levels can be measured. Maybe the lab you use has a more sensitive test than the ones we use. Apparently, in a research setting, they can use expensive, sensitive tests.

Have a nice rest of your weekend.

Becky
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Old 08-27-2006, 09:19 PM   #5
Lolly
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Thumbs up Bayer Serum Test - Dr. Walt Carney

Hi,
I'm currently on 2 weekly Herceptin with continuous low-dose Xeloda. Have been on Herceptin/+or- chemo since 2001 for systemic disease in lymph system. Initial tumor marker analysis was with CEA, but levels were no longer elevated at third recurrence in Oct.2005. First HER-2/neu Serum test was performed (and Navelbine stopped) one month after starting Xeloda.
The most recent test in May showed normal levels, although my recent PET scan in July showed the affected nodes as stable with some shrinkage in the largest node, but several small areas of new activity. Apparently Xeloda/Herceptin is keeping the activity contained in my lymph system, as the Serum test is showing no circulating cells and PET and Brain MRI show no other activity.




Oncogene Science HER-2/neu Microtiter ELISA (Reference: 5.1-13.5 = normal range

03/28/06 - 12.7
04/25/06 - 11.5
05/24/06 - 6.8



Also, here's a link to the discussion that took place on the board earlier this year with Dr.Walt Carney of Oncogene Science:

http://her2support.org/vbulletin/sho...ghlight=Carney


<3 Lolly

Last edited by Lolly; 08-27-2006 at 09:25 PM..
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Old 08-28-2006, 07:46 AM   #6
Cathya
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Lolly;

Thank you so much for posting. This makes sense as I recall someone on the site said that although she had tumors her markers, including the Serum Her2 test I believe, were normal. It sounds like you can be normal if you don't have significant circulating tumor cells but can still have a contained tumor. So, the test is useful if done regularly in order to know if things are progressing. I guess it would also be useful following clear MRI's or PET scan to monitor a build up in the blood which would lead to a tumor developing. Sound right to you? I hope more post on their results.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 08-29-2006, 02:45 PM   #7
Cathya
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Just bumping this up. Surely there are others using this test?

Thanks,

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 08-29-2006, 08:37 PM   #8
Lolly
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I think your take on using the test to monitor for progression is on the mark, from my understanding. I'm curious to see what my next test shows, with the increase in activity shown in my PET. I'll report in this thread, but it will probably be a couple of weeks before my onc orders another test, as the plan was once a month for 3 months, then I think he plans once every 3 months so I'm due. Will keep you posted.

Anyone else?

<3 Lolly
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Old 08-31-2006, 05:27 PM   #9
newgg
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Done

Hi Cathy,

Bayer serum HER 2 test ....blood drawn today. Sent to Quest Labs. See the doc in a couple of weeks. Will keep you posted and bumping this back to the top.
Hugs, Bonnie
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Old 08-31-2006, 05:31 PM   #10
tousled1
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HER2 Serum Test

I went for my Herceptin treatment today and had my first Serum HER2 test drawn. I took information from this website about the test to my oncologist's office and told her I wanted the test. My tumor marker tests have always been in the normal range (15.3) except for once when it was over 35. My last tumor marker was 15 and my PET/CT scan in July was clear. I guess I'll have to wait a week or so to get the result of the HER2 serum test.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 09-04-2006, 06:58 PM   #11
al from Canada
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to Bonnie

Bonnie, if tests are looking out of whack, you are getting concerned and the onc appears to be sitting on his hands....maybe it's time to get a second opinion, just a thought.
Al
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Old 09-04-2006, 08:06 PM   #12
Julie2
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I am getting my Her2 serum test done since nine months and the result varies from 6 to 8. The range is from 5 to 13.8

Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 09-05-2006, 09:46 AM   #13
newgg
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Thanks

Thanks Al....for your suggestion.

The onc and I are both looking at all this stuff and he is more than willing to get some test done. This is one of several that we will be looking at when I see him again in a couple of weeks. As we all know.....we are our own best advocates. The tumor marker is the most worrisome to me.....after 9 months on herceptin....dang thing still doing a steady climb.
Hugs, Bonnie
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Old 09-05-2006, 09:37 PM   #14
StephN
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Wink Serum test ball is rolling!

Hi Cathy and All -

I also had a HER2 serum test earlier in this year. It came back 8. something. Don't have it right in front of me.
With my CEA under ONE and the CA27-29 steady and well in normal range, my med onc did not see that I needed to repeat that test until some reason to check again.
Often a test is run two times if it is new, just to get a baseline. We did that with the CA125 for ovarian.

I now have a new med onc as the "old" one is leaving this area. I know she (the new one) is a big proponent of this test so I may be getting it more often. I don't see her for about a month.

Hope you can get this test. I also know that some clinical trials with stage IV HER2 positive patients are utilizing this trial far early information as to treatment working or not.
__________________
"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 09-07-2006, 04:34 PM   #15
Cathya
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Results in from Quest!!

Hi all;

Just got my Serum Her2 test results.....7.3. I'm pretty happy as these are smack in the middle of normal. I had been off herceptin for four months when this test was done so I'm feeling happy. I am ER/PR+ so it is possible that hormones could be feeding something I suppose and it is also possible that I have a pre-existing tumor and not many circulating her2's (? or whatever's) in the blood. BUT......I think these results are great. I'm going to have another test in a month or two to see if I have reacted to being back on herceptin and then if all is well it is recommended to do this test (as my results are in the normal range) four times a year. As an aside, I do find everything on the site (food rec's, tests, etc.) confusing as some things are good for hormone negatives but not recommended for hormone positives. In any case, a good day today!!!

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 09-10-2006, 11:33 AM   #16
Cathya
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I spoke to Gina about the results of my test....7.3 with the Serum her2. Her comments were very interesting and I thought I should pass them along to everyone. She is ER- and strongly Her2+++. She has had mets for 7 years and has used this test during that period along with other tumor markers and CT's scans, etc. to monitor her disease while using herceptin alone to fight her cancer. Her Serum her2 numbers are higher than mine. She commented:

"Keep in mind that this number does not guarantee that you do not have anything brewing 100 per cent, but it is a VERY good indication that you most likely are quite stable. If I were you, though, especially now that you are off herceptin, I would monitor that number at least once every 6 to 12 weeks, just to be on the safe side. Remember that years ago, after I first went off herceptin, it would take nearly a year off treatment before the numbers would go back up.... I know this is sombering, but with this illness, we can NOT afford to let down our guard...smile."

Best regards,

Cathy
__________________
Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 09-21-2006, 09:13 AM   #17
newgg
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Results

Finally got the results ....... The level is 8.3. Thank you one and all for sharing the info on this. After taking the doc and the lab specialist the info from this site and the lab site the test was done and sent to Quest lab......it was a first for this office. Will repeat in a couple of months and use this as a bench mark. Dang, it was so easy....why the heck did I not do it before??
Hugs, Bonnie
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Old 09-21-2006, 04:49 PM   #18
stephanie59
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HER2 serum tests and other concerns

Reading all of this and a call from Christine has prompted me to ask my onc that the HER2 serum test and the CEA be added to my blood work. Already getting the CA 15-3 which has been a steady 12+ for years, but would feel better having tests that seem more appropriate for HER2. Also, reading posts regarding tumors on the spine have alerted me to the fact that my lower back pain may not be just old age, so am scheduled for a bone scan next Friday. Asking for a brain MRI as well. Although I am eight years out, I have always felt that my treatment could be more proactive, but my onc is not a believer in tests and scans. Fortunately with a little nudging, he has been agreeable and things are moving forward. Thank you all for the information that could very well save my life. Stephanie
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Old 09-21-2006, 07:28 PM   #19
janet/FL
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Does anyone know how much the test would be out-of-pocket? As Stage 1, I don't think my insurance would pay. My oncologist--that has since left the practice, said if I would pay, he would authorize it. Don't know if the onc who took his place would or not. I just met him and am not too impressed.
Janet
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Old 09-21-2006, 07:33 PM   #20
Cathya
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Janet;

I think I paid around $225. at Quest in Watertown, NY. That is an approximate as I always think of the converted into Cdn $$ number.....good think our dollar has climb!!

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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