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08-11-2009, 07:38 AM
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#1
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Senior Member
Join Date: Apr 2008
Posts: 69
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Now What?
Friends,
I recently completed my 18th treatment of Herceptin and am now finished with all of my treatments. I saw my oncologist and he said we now just have to get on with life. I will see him every six months for two tyears then every year. Is it true that recurrance if it happens is most likely to occur in the first two years? And is this measured from when I was diagnosed or from when treatment ended. My onc was not supportive of "routine" scans, MRI, etc, other than a mamogram evry six months. Thiughts?
May you all receive peace, contentment and happiness in your endeavors.
Thanks.
Brenda
__________________
Diagnosed 3/08 at age 57
1.1cm tumor, ER-PR-, Her2 3+(rt side)
Grade 2
Node negative
clean margins
Stage 1
lumpectomy 4/08
Mammocite Radiation 4/08
Will begin TCH Chemo 5/08
TCH 3 week cycle for 6 cycles
Herceptin alone for 18 more treatments on a 3 week cycle
Total chemo 12 months
Neulasta 24 hours after each cycle
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08-11-2009, 09:13 AM
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#2
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Guest
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Re: Now What?
If you look at the statistics on recurrence following herceptin, I believe it peaks at around 2 years and then falls off dramatically, so your doctor is correct (of course!). I know it is hard to accept that you will not be tested constantly, but the tests will not prevent recurrence (if it happens - and you will most likely not have one) and the detection at 6 months would be sufficient. Of course if you notice anything you should contact your doctor. It is hard to go from constant treatment and monitoring to nothing - a lot of patients feel anxious about it (being on their own) - but it gets easier with time.
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08-11-2009, 09:27 AM
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#3
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Guest
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Re: Now What?
oh and I believe recurrence is measured in the herceptin tests from end of treatment, unless someone knows otherwise!
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08-11-2009, 01:29 PM
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#4
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Senior Member
Join Date: Apr 2008
Location: me & my three HANDSOME grandsons!!Jacksonville, Arkansas
Posts: 354
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Re: Now What?
Brenda, I'm right there with you, girl!
I just finished my last Herceptin yesterday! Woo Hoo!
Now, I'll get back to life as best I know how. Try not to worry about stuff that you have no control over. You did your very best and that's all you could have done!
__________________
Terri B.
46 yrs. young
Dx IDC 3/6/08
1.5 cm & .6 cm grade III, Stage IIA
es/pr- Her2+++, 9/9 richardson
Double Mast w/expanders 4-14-08
3/9 nodes positive.
additional excision rt breast 4-25-08
weekly T/H x 12 (6-2-08) Done!
FEC x4 (9-8-08) Last one 11-10-08!
Herceptin complete 8/10/09!!
33 RADS DONE 2/13/09!
rt. breast biopsy 3/20/09 .. B9!!
reconstruction complete!
DEEEEEEported on 5/19/10!!
almost 5 YEARS NED!!
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08-11-2009, 03:52 PM
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#5
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Senior Member
Join Date: Jan 2007
Posts: 368
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Re: Now What?
I was told the 2 years goes from the end of active treatment, and for us that's the end of Herceptin.
Other opinions may vary.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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08-11-2009, 06:31 PM
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#6
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Now What?
Brenda,
I'm in the same boat with you having just finished Herceptin a few weeks ago. No scans for me either, just wait and see. It is a bit maddening, but I have resolved to go about the business of living. Let's toast one another in two years when we are all still NED!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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08-11-2009, 07:04 PM
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#7
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Now What?
Well congratulations to all you ex-herceptiners (hmm) How awesome for you.
Yep, it's time to get on with the business of living and it gets easier each and every day.
My onc. just told me at my 6 month check up that typically he stops seeing his patients at 5 years and that seeing my internist would be sufficient unless the situation changed and then I would come back. However, he did say that in my case, (this Oct. being 3 years since herceptin finished) that he would see me for 2 additional years after that.
Congrats again ladies......
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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08-11-2009, 07:13 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Now What?
After I finished my last herceptin treatment I felt like a hot air baloon that had become untethered! Joyful that it was over...but where the heck was I going? And who was in control of the ropes???!!! Well, with time I have not worried as much, and worry less and less as time goes on. My onc, too did not believe in reg scans, said she would do them if I wanted but... Seems like every year since my last date with herceptin something has happened that lands me back in the hospital...not cancer related! Appendicitis...kidney stones... osteoporosis... gee getting old is great!. Recently had a positive BRCA2 test and am going in on monday for a prophylactic oopherectomy (against my onc's opinion). I have learned that I have to take care of myself and ask for what I want!!! Good luck XO Suzan
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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08-12-2009, 08:54 AM
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#9
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Now What?
Brenda,
Congratulations on finishing Herceptin.
I would agree with the two-year mark for Herceptin. My feeling is that two years is a sort of mini five-year mark. That is, most women who are destined to relapse will do so in the first two years. In general, about 75% of cancers that come back do so in five years, and about 90% do so in 10 years. I believe these general figures are based on the date of surgery.
As to follow-up scans, that may vary based on a patients initial diagnosis. I had a lot of scans, but my onc said that if I had been stage 1, she would probably have done only regular blood work and tumor markers such as CA 27-29 or CA 15.3.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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08-12-2009, 10:39 AM
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#10
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Senior Member
Join Date: Feb 2009
Location: Canada
Posts: 128
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Re: Now What?
My onc told me that in a study of 1000 women in Europe they found those women that were followed with all sorts of scans, etc did no better than the group with 6 mos checkups, except the quality of life was not as good as those doing the 6 mos checks. Still in active treatment I was horrified by the idea of only checking in every 6 months but as this goes on and on and on.....I will be so happy to say goodbye to the lot of them. From what I have read, if we are diligent about checking our body for signs of recurrence then we will do just fine.
__________________
12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced
I have heard there are troubles of more than one kind
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
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08-12-2009, 11:39 AM
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#11
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Guest
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Re: Now What?
Thanks for the replies. There seems to be a bit of a discrepancy about when the "two year" window begins....some say at the conclusion of treatment, others say from the date of surgery. Is there anything definitive on this question?
Again, many thanks to all who responded. This site is such is a wonderful combination or knowledge, support and comfort.
Brenda
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08-12-2009, 11:48 AM
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#12
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Senior Member
Join Date: Apr 2008
Location: me & my three HANDSOME grandsons!!Jacksonville, Arkansas
Posts: 354
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Re: Now What?
Yeah, I sure would love to know what the timeline is based on! I had my surgery in April 2008 and I JUST finished herceptin, so I'm talking about a year and 4 month discrepancy!!
__________________
Terri B.
46 yrs. young
Dx IDC 3/6/08
1.5 cm & .6 cm grade III, Stage IIA
es/pr- Her2+++, 9/9 richardson
Double Mast w/expanders 4-14-08
3/9 nodes positive.
additional excision rt breast 4-25-08
weekly T/H x 12 (6-2-08) Done!
FEC x4 (9-8-08) Last one 11-10-08!
Herceptin complete 8/10/09!!
33 RADS DONE 2/13/09!
rt. breast biopsy 3/20/09 .. B9!!
reconstruction complete!
DEEEEEEported on 5/19/10!!
almost 5 YEARS NED!!
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08-12-2009, 12:38 PM
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#13
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Now What?
As to the time line I've heard it both ways...but my onc told me they count it from the surgery date. In a way that makes more sense to me because that is when the cancer is removed. The chemo & rads is added insurance to get any stray cancer cells hiding out.
I was just talking to a woman yesterday at my cancer center about this very issue...she has a different onc then I do and was told the same thing I was...from date of surgery...so who knows? I hope others weigh in on.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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08-12-2009, 02:17 PM
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#14
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Re: Now What?
Brenda ~
Congratulations!!! It is a weird feeling not going in to see the Onc. all the time. I have my yearly checkup next week and I'm sure I'll get sweaty armpits, nervous laugh and upside down stomach when I walk in.
I went on a 3 month schedule for a year, then a 6 month schedule for a couple years and now on a yearly schedule indefinitely. My sweet Onc. said for me it was the 2 year mark of surgery that he was shooting for. I haven't had any scans in a long time...he is one to go on symptoms and that has suited my personality better. I absolutely HATE scans but that's me :-).
Congrats again!!
Hugs ~ Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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