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Old 12-10-2007, 02:04 PM   #1
nitewind
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Unhappy This really alarmed me

I was reading some information on the herceptin.com web site and came across two statements that took me by surprise. Maybe I've been trying not to think like this or maybe I just never thought about it at all, but now, it's really troubling me. I will quote the statements from Herceptin.com
"
With those treated with Herceptin in the clinical trials, most heart problems were seen during or shortly after the completion of Herceptin therapy:
  • Approximately half were known by the end of paclitaxel therapy
  • Approximately 90% were known by 1 year after completing paclitaxel
Am I reading this right? I was just assuming that after the herceptin treatment was finished that I wouldn't have to worry about heart problems anymore. Probably because I've seen where some have had heart problems and once the herceptin was stopped they returned to normal.
Oh dear.....something else to worry about.
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 12-10-2007, 04:27 PM   #2
Joanne S
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Wink Most heart problems were seen during or shortly after completion of Herceptin therapy

Your signature does not indicate when you finished Taxol treatments (actually you had Taxotere), but it indicates you just finished or are about to finish Herceptin 12/07. Many patient have a combination of Taxol with Herceptin. Perhaps you stopped having Taxotere several months ago, and I also assume you did not have heart problems during your one year of Herceptin infusions. If that's the case, I wouldn't be too concerned.

My interpretation is:
-Of all those with heart problems, 50% of heart problems were found by the end of Taxol Therapy,
-Of all those with heart problems, 40% of heart problems were found after the end of Taxol Therapy, but within one year after completing Taxol.

It's a little confusing with the title indicating "Herceptin therapy was stopped", and then the bullet indicates "shortly after completion of Herceptin"


What should I know if Herceptin is stopped due to heart problems?
  • In one study of patients receiving adjuvant therapy for breast cancer, 16% had to stop Herceptin because of a significant weakening of heart muscle or decreased heart function
  • In the 2 adjuvant clinical trials, among the 32 patients with significant heart problems:
    • One died of significantly weakened heart muscle
    • All others were on heart medication at their last checkup
    • Approximately half of the surviving patients had heart function that returned to normal while on ongoing heart medications
  • With those treated with Herceptin® in the clinical trials, most heart problems were seen during or shortly after the completion of Herceptin therapy:
    • Approximately half were known by the end of paclitaxel therapy
    • Approximately 90% were known by 1 year after completing paclitaxel
  • If Herceptin is stopped for a decrease in heart function, you should continue to be closely monitored for further decreases in heart function
  • For patients with Herceptin-related decrease in heart function, the safety of continuing or restarting Herceptin therapy has not been studied
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Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 12-10-2007, 04:49 PM   #3
Mary Jo
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Hi Susan,

I don't really have a clue as to the meaning of those statements you quoted from the herceptin site but Joanne's explanations sound logical to me. The REAL REASON for responding to your post was to tell you how much I love your new picture. You look awesome.

Hugs and love I send,

Mary Jo
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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

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Old 12-10-2007, 04:52 PM   #4
nitewind
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Thanks Joann, here I go again, just looking for something to worry about. Grrrr...I'm gonna quit reading stuff now.
Thanks again for clearing it up.
Hugs
Oh yeah, changed my sig a little, thanks
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 12-10-2007, 05:13 PM   #5
PinkGirl
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Nite,
The one year after completing Taxol is
the year that you were receiving the
Herceptin.... 2 months of Herceptin with
Taxol and 10 months of it alone.... so the
year they are talking about is one that just
went by.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 12-10-2007, 05:28 PM   #6
Joanne S
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Pinky,
It's one year after completing Taxol treatments (not one year after starting Taxol treatments), since she only had three Taxotere treatments, I would guess that would mean one-two more months for a very, very tiny chance of finding heart problems. I still don't think she has anything to be alarmed or worried about anyway.
Thanks,
Jo
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Old 12-10-2007, 07:00 PM   #7
suzan w
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I think that if you made it through the Herceptin with no adverse effects on your heart that you will be just fine!!! I hate statistics! Unless they are in my favor!!!!!
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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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Old 12-10-2007, 07:30 PM   #8
nitewind
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My thanks to all of you. Sometimes, all we have to do is misconstru one little thing and get all freaked out....I'm really good at that!
And Mary Jo, what a sweet thing to say, I was a little leery about having my picture taken that night, but I figure, hey....it's me now, don't plan on looking like I used to. Just takes a little getting used to.
I'll try to be good and not freak anymore but I can't make any promises.
Thanks girls
Hugs
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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