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Old 02-27-2014, 06:53 AM   #1
Gail
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Is Herceptin working and the need for scans

Is there any testing to see if herceptin is working? I am +++ very high so from what I can see my chances of herceptin preventing a recurrence are good but ....

Also after I get through the year of herceptin how often do others have scans etc? My oncologist has just said annual mammograms and nothing else.

Thanks
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DX 5th November 2013
Age 49 premenopausal
Lumpectomy (left) 19th November 2013
8mm, Grade 3 IDC,
Stage 1, node negative
ER++ PR+++ Her2+++, Ki67 70 - 80%
BRCA tested - negative
AC chemo began 3rd January 2014 (4 rounds) completed
Paclitaxel weekly for 12 rounds cancelled after round 6 due to neuropathy
Docetaxel began 30th May 2014 - 2 rounds completed 20th June
Herceptin (3 weekly for 1 year) began 11th April 2014
Radio completed 2nd September 2014
Long dates cause I'm an Aussie and will mess up if I try to do it your way :)

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Old 04-10-2014, 02:23 AM   #2
mjm
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Re: Is Herceptin working and the need for scans

Hi Gail,

I'm not an expert on this as Mum was only diagnosed in Jan, but we are in Australia too and have been wondering about the same issue.

It is standard practice here not to do any more scans aside from mammograms after treatment, unless you get symptoms that suggest a problem. We would love to have some kind of reassurance too that there is no early signs of recurrence!

I think Mum's onc did a CA15-3(?) blood test early on which if high can indicate a recurrence is more likely. I think some women get these done routinely as follow-up after treatment (to see if levels are high), but don't yet really understand this one - we are just starting to look into it now.

How are you going on the Herceptin only compared to the full cocktail?

Best wishes xo
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Old 04-10-2014, 07:50 AM   #3
JillaryJill
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Re: Is Herceptin working and the need for scans

My onc did not order scans unless I reported a symptom. You can see from my signature...I did have a few symptoms. Sometimes it is hard to distinguish an ache and pain from cancer! That part is maddening to me! The scans themselves, especially CT's have risks because of raditation.
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 04-11-2014, 12:20 PM   #4
Mtngrl
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Re: Is Herceptin working and the need for scans

It's tough to live with so much uncertainty, isn't it? But here in the U.S. they also don't routinely look for recurrence or metastasis. A study comparing people who were followed closely after treatment ended to those who weren't showed no benefit, in terms of overall survival, to being followed closely.

You're basically just playing the odds. To improve them, get a half hour of exercise a day, eat lots of fruits and vegetables, maintain a healthy body weight, and manage your stress.

There's a book called Anti-Cancer; A New Way of Life that might interest you. The author makes the excellent point that whether or not the lifestyle he adopted, and recommends in the book, would keep his cancer at bay forever, the changes he made gave him (and those around him) a better quality of life.
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Old 04-12-2014, 04:05 AM   #5
Aussie Girl
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Re: Is Herceptin working and the need for scans

Dear Gail,

You have a good prognosis tumor! It was small with no nodes and you can have the herceptin and the anti-oestrogen treatment. All good news. Most patients with Her2+ cancers are helped by Herceptin, but there is no real way of measuring the response.

You will be seeing your surgeon intermittently and you'll be given a form for a mammogram (+/- ultrasound, depending on your breast tissue density) at about 12 months. Earlier if you have any symptoms like breast tenderness or thickening. Then annually forever.

No other scans are done to search for mets because, at your early stage, your chance of having mets are low after full treatment. The scans can be falsely positive and cause a lot of anxiety, as well as being expensive.

Your doctor may like some yearly blood tests (eg. liver function tests) and a physical exam. You can check yourself for breast or armpit lumps and see the doctor should you find one. The following list of symptoms are the ones you should go to the doctor about.
  • Pain, such as chest or bone pain
  • Persistent, dry cough
  • Difficulty breathing
  • Loss of appetite
  • Persistent nausea, vomiting or weight loss
  • Severe headaches
  • Fever and Chills (uncommon)
Obviously, other things could cause these symptoms and your risk of recurrence is very low. After treatment it is easy to get anxious about the risk of recurrence, but you have to go on living like you are going to live forever, whilst taking care of your health in a common sense way.


Good luck


Aussie girl
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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!
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Old 04-14-2014, 04:24 PM   #6
Rolepaul
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Re: Is Herceptin working and the need for scans

8 mm, node negative, HER+. You are considered low risk for a recurrence! That being said, I do like the blood tests to track things. I think the tests are going to become more common in the near future. The push is to be able to test for issues, in the same manner as for high blood pressure and high lipids.
You caught it early. That likely saved you from future issues. Stay vigilant to changes in your body and mind, but it is unlikely that you will see the disease comeback.
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Old 04-21-2014, 09:37 AM   #7
Mtngrl
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Re: Is Herceptin working and the need for scans

I'm assuming they'll also have you on tamoxifen or the like for a number of years. In addition to catching it early, you're lucky the tumor was triple positive. You do, indeed, have a low risk of recurrence or metastasis.

Amy
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Old 04-21-2014, 03:10 PM   #8
Carol Ann
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Re: Is Herceptin working and the need for scans

Thanks RolePaul and Amy, I have a similar story .. see my signature -- stage 1, node negative, both tumors were estrogen positive, starting Arimidex (I am 57, postmenopausal, etc.) I too wish there was a blood test, but I am figuring I am still in very good shape, all things considered!

Carol Ann
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July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 04-21-2014, 04:11 PM   #9
IrvineFriend
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Re: Is Herceptin working and the need for scans

I asked my Onc. about the blood test and it's only used for stage 4 patients for the reason that AussieGirl addressed. Way too many false positives. He said they are telling doctors to NOT do it. So it's sort of just hope for the best at the moment! I worry a little too because my cancer was massive but hopeful.

Best,
-Julie
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Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 04-22-2014, 03:33 AM   #10
Gail
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Re: Is Herceptin working and the need for scans

Thank you all for your replies. I know how lucky I am to have caught this so early so just trying to keep on top of it as much as possible. Still in my chemo daze at the moment so good and bad days but I'll come back and read these posts when I get in those "woe is me" phases to stay positive. This forum is great and although I don't post a lot I read it regularly and it is a great help so thanks again
__________________
DX 5th November 2013
Age 49 premenopausal
Lumpectomy (left) 19th November 2013
8mm, Grade 3 IDC,
Stage 1, node negative
ER++ PR+++ Her2+++, Ki67 70 - 80%
BRCA tested - negative
AC chemo began 3rd January 2014 (4 rounds) completed
Paclitaxel weekly for 12 rounds cancelled after round 6 due to neuropathy
Docetaxel began 30th May 2014 - 2 rounds completed 20th June
Herceptin (3 weekly for 1 year) began 11th April 2014
Radio completed 2nd September 2014
Long dates cause I'm an Aussie and will mess up if I try to do it your way :)

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Old 04-22-2014, 08:09 AM   #11
linn65
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Re: Is Herceptin working and the need for scans

I wouldn't ever consider yourself LUCKY to have any kind of cancer and have to take chemo. I sure don't consider myself LUCKY. IT IS scary as hell and don't feel like I am not stage IV and therefore I am lucky....We all know you can go from Stage 1 to stage IV quickly or never. It all sucks!!!

Hang in there!!

I was told no scans until or if I have a symptom....Vague, huh. And I am done with treatments besides taking the tamoxifen. However, I did have an MRI last night and I did have a cyst that was 3 mm in 2007. After my last surgery my spine as really hurt, and I think surely it isn't cancer but once you know the treatment and what you have to go thru. It does not make you all happy inside it is just one more thing....Someday's are dark and cloudy, someday's are bright and sunny....Cherish the good ones and get thru the dark ones.
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myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-14-2014, 07:16 AM   #12
Gail
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Re: Is Herceptin working and the need for scans

Thanks heaps for that post Linn. It's all about benchmarking isn't it! Compared to others I'm lucky but yeah generally this sux. Finished chemo now so feeling a lot better. Radio to get through now and then just herceptin. Day by day
__________________
DX 5th November 2013
Age 49 premenopausal
Lumpectomy (left) 19th November 2013
8mm, Grade 3 IDC,
Stage 1, node negative
ER++ PR+++ Her2+++, Ki67 70 - 80%
BRCA tested - negative
AC chemo began 3rd January 2014 (4 rounds) completed
Paclitaxel weekly for 12 rounds cancelled after round 6 due to neuropathy
Docetaxel began 30th May 2014 - 2 rounds completed 20th June
Herceptin (3 weekly for 1 year) began 11th April 2014
Radio completed 2nd September 2014
Long dates cause I'm an Aussie and will mess up if I try to do it your way :)

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Old 12-21-2014, 12:43 AM   #13
Dakini52
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Post Re: Is Herceptin working and the need for scans

Hi, my onc has monitored me with scans from the end of my treatment which ended in December 2006. I was in remission for 3.5 years and still receiving the scans every 6 months when my recurrence was detected. I had no other signs of illness so without the scan I feel I could have easily gone to stage IV before I had significant enough symptoms. My recurrence was local and was treated with surgery, radiation and Herceptin which I receive every three weeks for the last 5 years. I have not had another recurrence, however, I still receive a MUGA, CTscan and brain MRI every 6 months. I just don't
believe you can rely on symptoms because many times by the time symptoms are felt the progression is advanced and possibly could have been detected much earlier with a scan. Just my opinion.
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Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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