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06-07-2011, 04:52 PM
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#1
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Junior Member
Join Date: Jun 2011
Posts: 3
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After Herceptin
Hello everyone, I have been hanging around this site for sometime. I just finished my ( I hope) last herceptin treatment Wednesday. My doctor says there is nothing else to be done, because I have completed the treatment designed for my cancer. This entails A/C ,Taxol/ herceptin ,and then a year of herceptin . I am concerned because I have read the maintenance part of this process is to have PET scans or blood tests to make sure the treatment was successful. My doctor says I have to come in every three months to talk with her but their will be NO PET scans or blood tests. She told me that the time of becoming symptomatic and the time recurrence is seen on a scan is only one month and the treatment would be the same. I was never symptomatic I felt the lump deep in my breast on a self exam and it was not picked up on a mammo. by the time it was seen it was the following year and it was because i said something and they sent me for a sonogram right after the next years mammo. By this time it was in my sentinal node. That was the only node however treatment started with a full mastectomy reconstrutive surgery and then the chemo herceptin treatment. My question is, Is this just my doctor or has everyone experienced this confusion?
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06-08-2011, 04:17 AM
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#2
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Senior Member
Join Date: Nov 2010
Location: Doylestown, ohio
Posts: 334
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Re: After Herceptin
Not sure since I have not completed herceptin yet. I go to tomorrow for herceptin and I will ask. It's funny how we cannot wait to be done with treatment and then when it is over we feel like we lost our security blanket. Gradulations on completing treatment. Good luck to you.
__________________
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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06-08-2011, 05:56 AM
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#3
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Senior Member
Join Date: Oct 2010
Posts: 229
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Re: After Herceptin
My story is similar to yours. Asymptomatic until I felt the lump, in sentinel lymphs. I asked the same questions and was told no scans unless warranted. I have finished all treatments except continuing on Tamoxifen. The onc said 2weeks of persistent pain should cause you to get a specific check up, otherwise blood work only every 4 months for now! Yes, I agree it seems scary not to confirm NED. I will wait and pray myself through this like everyone else!
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011
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06-08-2011, 02:08 PM
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#4
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Senior Member
Join Date: Feb 2010
Location: TN
Posts: 175
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Re: After Herceptin
Helen--It sounds like your oncologist and mine are singing from the same song book. Even though mine has done tumor markers and other blood work on me twice since I finished Herceptin last summer, he told me that my body will tell me if I metastasize or otherwise recur. Any lumps that I notice or persistent pain I experience will be the clues, according to the good doctor. My doctor also told me that the statistical evidence points to no correlation between the time a recurrence is first detected and overall survival.
So I guess we watch and pray as the days roll by. Each one is a precious gift and we can look forward to the time in the future others on this boards have said will come when our anxiety diminishes. --bird
__________________
Male Breast Cancer, DX 5/15/09, IDC, STAGE 1, 1.7 cm, HER2+++, ER+(95%)/PR+(75%), Ki67 40%, grade 3, 0/5 nodes, TX: mastectomy, TCH finished 7/19/10, radiation 6 wks., Tamoxifen on going, bisphosphonate 24 mos.
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06-08-2011, 02:14 PM
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#5
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Senior Member
Join Date: Feb 2010
Location: TN
Posts: 175
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Re: After Herceptin
Helen--It sounds like your oncologist and mine are singing from the same song book. Even though mine has done tumor markers and other blood work on me twice since I finished Herceptin last summer, he told me that my body will tell me if I metastasize or otherwise recur. Any lumps that I notice or persistent pain I experience will be the clues, according to the good doctor. My doctor also told me that the statistical evidence points to no correlation between the time a recurrence is first detected and overall survival.
(I will note that my surgeon at my one year anniversary did order a PET for me since he wanted to compare it to the one done at my diagnosis. It showed no changes but did confirm I still had a serious thyroid problem that eventually led to another surgery.)
So I guess we watch and pray as the days roll by. Each one is a precious gift and we can look forward to the time in the future others on this board have said will come when our anxiety diminishes. --bird
__________________
Male Breast Cancer, DX 5/15/09, IDC, STAGE 1, 1.7 cm, HER2+++, ER+(95%)/PR+(75%), Ki67 40%, grade 3, 0/5 nodes, TX: mastectomy, TCH finished 7/19/10, radiation 6 wks., Tamoxifen on going, bisphosphonate 24 mos.
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06-08-2011, 08:40 PM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: After Herceptin
Hi Helen,
Congratulations on completing your Herceptin treatment today! Perhaps both oncologists (Rarebird's and yours) are familiar with the study cited below:
Curr Oncol Rep. 2008 Jan;10(1):38-46.
Breast cancer follow-up in the adjuvant setting.
Khatcheressian J, Swainey C.
Source
Division of Hematology/Oncology and Palliative Care, Massey Cancer Center of Virginia Commonwealth University, PO Box 980230, 1101 East Marshall Street, Richmond, VA 23298, USA. jkhatche@vcu.edu
Abstract
Breast cancer may recur through 15 years and beyond after diagnosis; thus, breast cancer patients require long-term follow-up after adjuvant treatment to detect recurrent disease.
History taking, physical examination, and regular mammography are still the foundation of appropriate breast cancer follow-up in the adjuvant setting. Clearly, breast MRI has a role in certain high-risk patients, but in moderate-risk patients, the decision to use MRI must be based on the complexity of the clinical scenario.
Other routine imaging studies (CT, positron emission tomography, and bone scans) and laboratory testing--including tumor marker assessments--in asymptomatic patients have not demonstrated an improvement in survival, quality of life, toxicity, or cost-effectiveness.
Survivorship issues are also an inherent part of breast cancer follow-up; physicians should make every effort to address supportive care issues unique to breast cancer survivors including hot flashes, bone health, neuropathy, and risk-reduction strategies.
__________________
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
Last edited by Jackie07; 06-08-2011 at 08:48 PM..
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06-12-2011, 06:57 PM
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#7
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Junior Member
Join Date: Jun 2011
Posts: 3
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Re: After Herceptin
The one thing my doctor did say was that now having three or less lymph node involvement has the same prognosis as having no lymph node involvement. This however does not make me feel secure. As I had felt one lump, and I actually had three tumors.
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06-12-2011, 07:00 PM
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#8
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Junior Member
Join Date: Jun 2011
Posts: 3
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Re: After Herceptin
It is so shocking but at least I am not alone. Thanks for posting. Stay strong...
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05-01-2012, 08:01 PM
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#9
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Senior Member
Join Date: Apr 2012
Location: Ontario, Canada
Posts: 62
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Same Story Here in Canada
My oncologist says the same thing, that the research shows no benefit for regular testing for mets and that survival is not improved by starting treatment before symptoms occur. She says if I am feeling good, why would I want to start chemo sooner, if there is no proven benefit to starting earlier. She says also that psychologically, we need to get away from constant reminders of illness, and that we should concentrate on each new day and the joy of life, not the prospect of "the end". I admit to having a hard time doing this, but I am trying....
__________________
Dx Nov 2010 at age 65 - 3.5 cm invasive ductal, 8 of 15 nodes. ER-,PR-, HER+++. Lumpectomy, chemo, 6 weeks rads, 52 weeks herceptin finished April 2012.
CAT,PET, bone scan, ultrasound and mammogram in Spring 2012 - NED.
Cherishing every day, but realistically "watching my back" (or should I say "front"?
Eating foods thought to fight cancer, exercising every other day,using my garden as my mecca of peace, and loving my supportive husband more than ever.
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05-02-2012, 07:41 PM
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#10
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Senior Member
Join Date: Aug 2011
Posts: 271
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Re: After Herceptin
My onc does not scan or do blood tests. She has an open door to report symptoms that last a month. It causes me anxiety also, that I just got "cut loose" after my last Herceptin treatment, but I had a follow up visit with my breast surgeon, my plastic surgeon and next week I see my radiation oncologist, so it seems a doctor is always looking at me! I will see my onc in another few months also. As time goes on I do get less anxious about it.
__________________
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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06-02-2012, 08:37 AM
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#11
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Senior Member
Join Date: Nov 2011
Location: Satellite Beach, Florida
Posts: 36
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Re: After Herceptin
@rare bird, did you ever live in North Carolina? Specifically, Camp Lejuene?
__________________
Dx'd 5/2011 IDC 1.6cm, stage 1, grade 2, er+pr-, HER 2, 0/2 nodes, P53 75%, KI67 90%
6/23 bilat mast, port 6/27 expanders, 8/08 AC x6, Herceptin 1 yr., Arimidex -Jan 1st 2012- 5 years, reconstruction- exchange surgery 3/30, nipples 7/2012? Then tattoos......
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06-02-2012, 08:49 AM
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#12
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Senior Member
Join Date: Feb 2010
Location: TN
Posts: 175
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Re: After Herceptin
Fire--No, Camp Lejuene has never been home for me. But I am aware of the cluster of cancers, particularly male breast cancer, that have occurred in the residents of the camp back in in the 1980's and earlier. The carcinogens found in the drinking water of that facility during those years lead many to believe that the cancers were caused by those pollutants. My breast cancer may have also been caused by ingestion of carcinogens, but they didn't come from Camp Lejuene. Thanks for asking---bird
__________________
Male Breast Cancer, DX 5/15/09, IDC, STAGE 1, 1.7 cm, HER2+++, ER+(95%)/PR+(75%), Ki67 40%, grade 3, 0/5 nodes, TX: mastectomy, TCH finished 7/19/10, radiation 6 wks., Tamoxifen on going, bisphosphonate 24 mos.
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06-16-2012, 09:29 AM
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#13
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: After Herceptin
I never had symptoms, tumor markers or any pain, other than a thickening and slight enlargement of the breast that had the tumor, and some pain (from my bra pressing on the tumor). But after confirming bc they did staging studies and found metastases in that manner.
Nevertheless, I can see the logic of not doing anything unless and until symptoms crop up, especially if "early" diagnosis of Stage IV truly does no good in terms of overall survival. Actually, it's pretty clear that early diagnosis of earlier stage bc also does no good in terms of overall survival. The recent modest drop in breast cancer deaths is from better treatments, not early detection.
I had a 6 month respite from scans. Then I learned of some progression (totally asymptomatic.) So I'm on a different treatment, and I'm having symptoms from the drug, not the cancer. I enjoyed that 6 month break.
My current treatment is part of a study, and I'll be scanned every other month. I hate "scanxiety." Not a big fan of having Stage IV cancer either, but that's the breaks.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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