HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 05-23-2014, 08:45 PM   #1
Catherine
Senior Member
 
Catherine's Avatar
 
Join Date: Dec 2006
Location: Oregon
Posts: 715
New protocol when NED: no tumor markers

I am 8 years out from DX and 6.5 years out from my last Herceptin. I am healthy but still see my oncologist twice a year. On my last visit April 2014, I was told that I would not be getting tumor markers anymore. If I understood correctly, they are no longer the "gold standard" if you are NED. I think I will call back and ask a few questions. Does anyone know about this change in protocol? Is it because it has been so long since treatment? Is it because of my age? Are others still getting tumor marker numbers? If I recall correctly mine was always around "7". Thanks for any information you can share.

Happy Memorial Day Weekend!
__________________
Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
Catherine is offline   Reply With Quote
Old 05-23-2014, 09:40 PM   #2
roz123
Senior Member
 
roz123's Avatar
 
Join Date: Mar 2012
Posts: 199
Re: New protocol when NED: no tumor markers

My MO does not do markers. Have never had one done. Many docs think they are unreliable. I dont believe they are standard of care
__________________
diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
roz123 is offline   Reply With Quote
Old 05-23-2014, 09:53 PM   #3
Adriana Mangus
Senior Member
 
Join Date: May 2006
Location: California
Posts: 668
Re: New protocol when NED: no tumor markers

Hi Catherine,

I think it depends on whether the tumor markers have been reliable for your specific situation. In my case I do tumor markers once every four-six weeks.

The tumor marker has been for me a wonderful tool along with regular Ct-Pet-Bone scans. Based on both; tumor markers and scans, my doctor and I have worked closely by choosing chemo drugs we both feel would benefit me.

Interesting topic. Thank you for posting.

Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
Adriana Mangus is offline   Reply With Quote
Old 05-23-2014, 10:34 PM   #4
AlaskaAngel
Senior Member
 
AlaskaAngel's Avatar
 
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
Re: New protocol when NED: no tumor markers

Hi Catherine,

Right after chemo mine were high but settled down after a short time and have remained in the range like yours, generally between 7 and 9. I am so far out now that my PCP would continue to do them only yearly. But a 15-3 is being done routinely as part of a clinical trial I participate in, which is reported to him, so he just uses the report from that. (I haven't been to an onc since 2006 - and remain NED.)
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
AlaskaAngel is offline   Reply With Quote
Old 05-24-2014, 05:45 AM   #5
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: New protocol when NED: no tumor markers

My CEA, not 15-3 or 125, has always been an accurate tracker for me. If the CEA is up, so is something else.

Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
KDR is offline   Reply With Quote
Old 05-24-2014, 01:28 PM   #6
tricia keegan
Senior Member
 
tricia keegan's Avatar
 
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: New protocol when NED: no tumor markers

Hi Catherine, my Onc has never done tumour markers and the only time my blood is checked now is before a routine Zometa treatment once a year.
__________________
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!
tricia keegan is offline   Reply With Quote
Old 05-24-2014, 01:56 PM   #7
suzan w
Senior Member
 
suzan w's Avatar
 
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
Re: New protocol when NED: no tumor markers

I no longer see an on oncologist. My GP did tumor markers if I requested. Now I no longer request...my oncologist always thought they did not mean much even though they were always a part of routine blood work pre chemo and herceptin.
__________________
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!!
suzan w is offline   Reply With Quote
Old 05-24-2014, 02:36 PM   #8
FLfrost
Senior Member
 
Join Date: Apr 2014
Posts: 47
Re: New protocol when NED: no tumor markers

I have worked in Oncology for 25 years. I am in the billing department with a laboratory technology degree my medical knowledge was needed in the billing area. It was my job to
to document how chemo and procedures such as laboratory tests are covered by each insurance company. Per my MD's tumor markers are really only useful for following response to treatment. Usually by the time you have a spike in your markers they already know of issues discovered on other exams. So if there is no evidence of disease most insurance companies won't cover the test.
__________________
HX: left breast IDC T1a node negative 1999. Lumpectomy, sentinel node biopsy, radiation therapy, 5 years of Tamoxifen, 1 year of Femara discontinued due to intolerance.
3/21/14 almost 15 years later abnormal mammogram 2 cm right breast mass deep in the breast by the chest wall, mammogram last year was normal. Ultra sound confirmed highly suspicious for malignancy.
3/26/14 needle biopsy proven IDC grade 3, ER+ PR+ Ki67 75%, Her 2 in process.
3/31/14 Consult with Breast Surgeon. Bilateral mastectomy discussed along with referral to plastic surgeon for planned surgery with reconstruction.
4/4/14 Her 2 +. My Oncologist explained that this is a new primary and unlike before in 1999 very aggressive. Surgery put on hold.
BRCA testing done. Results were negative for gene mutation.
4/7/14 PET CT for staging for possible neoadjuvant treatment. Results indicate 1.3 cm tumor and a positive lymph node.
4/9/14 lymph node biopsy. Pathology documented metastasis.
4/14/14 cardiac echo result Ejection Fraction 60%
4/16/14 Port placement
4/17/14 1st chemotherapy treatment
with Herceptin, Perjeta, taxotere and carboplatin.
4/18/14 1st treatment done yesterday with no events whatsoever!
4/23-4/25 Dreaded D hit really hard.
Daily visits to the Oncologists office for hydration and neupogen injections.
4/24/14 Started on Cipro for seriously low WBC count.
4/25/14 Results of blood count at MD office so low (ANC 0.08) I am hospitalized in isolation for neutropenic precautions. One treatment wiped out my immune system!
4/28/14 home recovering. 4/30/14 MD's new plan of treatment: reduced dose weekly taxotere, carboplatin, Herceptin with Perjeta every third week.
5/7/14 Cardiac echo > than 60% and the breast ultra sound showed 2 cm lymph node now only .5 cm. mass in breast is unable to be palpated!! treatment is a go.
5/9/14 Partial 2nd treatment, full dose Herceptin and Perjeta 1/3 dose taxotere and carboplatin.
5/13/14 lab check and fluid infusion.
5/14/14 Appointment with my Oncologist. The lab results are great and the dreaded "D" not as severe as 1st round. Then I mention that my left calf and foot are swollen and painful to the point of limping, could be the drugs but to be safe I had a venous doppler study. I have a clot in my left leg. It wasn't totally occluding the vessel and she really didn't want me in the hospital. Now I will be on Arixtra shots in my tummy till the chemo is complete sometime in August, 2014
5/16/14 continuation of 2nd treatment taxotere carboplatin only.
5/23/14 continuation of 2nd
treatment taxotere, carboplatin only
Amazingly no horrid "D" or nausea!!
5/28/14 visit with the oncologist, great news she can no longer feel a breast mass or the malignant lymph node Yippee!!
5/30/14 started 3rd chemotherapy cycle had full dose Heceptin, Perjeta ans 1/3 dose taxotere and carboplatin.
6/6/14 next dose of taxotere carboplatin for 3rd cycle
6/13/14 last dose taxotere carboplatin 3rd cycle
6/16/14 I am scheduled again for another breast ultrasound to see extent of response to chemotherapy. results will direct continued chemotherapy of directly to surgery!
6/20/14 tentative 4th chemotherapy cycle



"Zumokato Toku" is my Chemo Ninja Cancer Assassin name!
FLfrost is offline   Reply With Quote
Old 05-24-2014, 05:06 PM   #9
Debbie L.
Senior Member
 
Debbie L.'s Avatar
 
Join Date: Jul 2006
Posts: 463
Re: New protocol when NED: no tumor markers

Catherine, as far as I know, tumor markers have never been the "gold standard" for follow-up after treatment for primary breast cancer. The reasons for this are basically twofold:

1. They are unreliable: either not showing anything upon recurrence, or showing random false positives (leading to anxiety and invasive testing when there is no recurrence).

2. (probably the more-important bit) It has never been shown that picking up a recurrence with tumor markers (or imaging), before the recurrence is found because of symptoms improves the outcome (life is not prolonged nor improved).

It's a whole different discussion, about tumor markers for following disease (and/or response to treatment) for already-existing stage IV breast cancer. For some, tumor markers are useful in this regard. For others, the cancer doesn't elevate tumor markers even when it's widespread, so they are not useful for these women and men.

That said, it is true that many oncologists (and/or patients) do choose to draw tumor markers on some regular basis after treatment for primary breast cancer. I would guess (as others have mentioned) that your onc's change in his/her practice relates either to a buckling-under to the national (NCCN, in the US) guidelines, to insurance coverage (or more-accurately, the lack of it), or to their facility's move to standardize practice to be in line with "standard of care".

Everyone has different feelings about this. For me, I was relieved to learn that it was not ultra-vigilance that might make a difference to what would happen to me after treatment for primary breast cancer. That understanding allowed me to let go of the illusion of control and learn (sometimes kicking and screaming) to deal with the uncertainty. I learned (over time) to accept that it is essentially a crap shoot, and that if I had a recurrence -- how it was discovered would not affect the outcome.

The disclaimer here is that it is arguably of benefit to detect brain mets "early" (before symptoms) so that less-invasive treatment (targeted radiation vs. whole brain, for example) may be used. And we know that HER2+ breast cancer is more likely to result in brain mets. I think there's a strong argument for finding ways to monitor for brain mets of HER2+ breast cancer, both after primary breast cancer and stage IV diagnosis. But the best way to do that is probably with imaging, not tumor markers.
__________________
3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
Debbie L. is offline   Reply With Quote
Old 05-24-2014, 10:16 PM   #10
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: New protocol when NED: no tumor markers

In reference to tumor markers and brain mets.

My CEA was elevated out of normal range and the only thing that was moving cancerwise were two brain mets. The rising CEA caused other scans, but since I had no symptoms and had a clean brain MRI a few months earlier, my brain was the last place we looked!

Our founder Christine had the same situation with CEA rising along with a new brain met. I did not know that until we had a converstion about our experiences. Or I might have mentioned "my brain" earlier.

Not everyone gets CEA checked as it is not specific to breast cancer, but my original med onc had a hunch I should have that once I joined the stage IV group.
__________________
"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.
StephN is offline   Reply With Quote
Old 05-25-2014, 07:11 AM   #11
Debbie L.
Senior Member
 
Debbie L.'s Avatar
 
Join Date: Jul 2006
Posts: 463
Re: New protocol when NED: no tumor markers

Thanks for that, Steph. Wouldn't it be perfect if there were a reliable marker for everyone, to announce brain mets and spur further diagnostics and allow early/easier treatment options? It seems like, since the brain is so different, there MUST be some neuro-secretions (I have no idea if that's a word, but you know what I mean) that could be used as a marker in a blood test.

But as it stands so far, I think all the existing markers are equally unreliable. Elevated with some cancers and not with others (plus elevated by things other than cancer), so that as a screening tool, they are not very useful. I'm glad that CEA made a difference for you and Christine, and I hope they can find something similar that makes a difference for all.

Lani posted a study of PET/MRI vs. PET/CT which includes a bit about brain mets detection. Full body scanning is overkill for brain mets/this discussion but still, there may be some hints there.
Debbie L. is offline   Reply With Quote
Old 05-25-2014, 04:21 PM   #12
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: New protocol when NED: no tumor markers

Looks like we've past the tumor marker era ...

World J Clin Oncol. 2014 May 10;5(2):48-60.
MicroRNAs in pathogenesis of breast cancer: Implications in diagnosis and treatment.
Shah NR, Chen H.
Author information
Abstract
MicroRNAs (miRNAs) are small non-coding RNAs generated by a two-step complex process and are post transcriptional negative regulators of their target mRNAs. Dysregulation of many of these miRNAs has been associated with tumorigenesis in various cancers including breast cancer. Aberrantly high expression of specific miRNAs in breast cancer cells is demonstrated to be linked with inhibition of tumor suppressor genes and promote tumorigenesis. They are classified as oncogenic miRNAs. However, the tumor suppressor miRNAs are downregulated in breast cancer cells, since their major targets are oncogenic mRNAs. Understanding mechanism of action of specific miRNAs in breast cancer cells can be utilized to develop newer anti-cancer therapies. Recently, newer techniques are also developed to detect abundance of specific miRNA in the blood plasma samples and can be used in early diagnosis or prognosis in breast cancer. In this review article, we have discussed several miRNAs dysregulated in breast cancer and their therapeutic potential.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
Jackie07 is offline   Reply With Quote
Old 05-25-2014, 10:33 PM   #13
Catherine
Senior Member
 
Catherine's Avatar
 
Join Date: Dec 2006
Location: Oregon
Posts: 715
Re: New protocol when NED: no tumor markers

Thank you everyone with the information you have posted. Over the years since my treatment has been over, i have tried to keep a bit up to date with current treatments. My research and knowledge has not been half as good as some of the very smart and experienced members of our site. What was the cute name we called these bright people? Motor heads? Brainiacs? The tumor markers I used to have was the CA 15-3. You have answered my question and I get it. The test is most helpful at the beginning of the BC journey. A test that is not necessary or overly reliable at this point.Once again my Her2 friends have helped me out. You are all awesome!

Hugs and thanks!
__________________
Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
Catherine is offline   Reply With Quote
Old 05-26-2014, 01:29 AM   #14
Lien
Senior Member
 
Lien's Avatar
 
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
Re: New protocol when NED: no tumor markers

Perhaps I should add that my markers were not elevated at diagnosis. Entirely within the normal range... So I guess they would not be reliable for me.

The "gold standard" here in the Netherlands has always been - or at least for the past 10 years, since my diagnosis - that they are only used to monitor treatment efficacy in advanced BC.

May you never have to worry about breastcancer again!

Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
Lien is offline   Reply With Quote
Old 05-26-2014, 02:55 AM   #15
Aussie Girl
Senior Member
 
Aussie Girl's Avatar
 
Join Date: Jul 2013
Posts: 260
Re: New protocol when NED: no tumor markers

Dear Ladies,

I started reading this topic thinking that I might be able to add to the discussion, being a pathologist - but you smart ladies have stolen the words out of my mouth. What a fantastic community this is!

Aussie Girl
__________________
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
Aussie Girl is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 01:16 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter