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Old 01-12-2022, 01:19 PM   #1
Pamelamary
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Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
The party's over?

Hi everybody,
After nearly 10 years stable on Herceptin and Letrozole, it seems the beast has struck again. It was no surprise when a tumour in the brain was discovered, but it isn't a breast met. No such luck! I have Glioblastoma Multiforme, which is a totally shitty diagnosis, with even shittier treatment to come.
However, having lived in Cancerville for so long, I am feeling rather "Zen" at the moment. The old cliches - 'one day at a time', and' listen to your body" are proving useful.
Frenetic activity - so many appointments, with stereotactic radiation and brain directed chemo. Ever the optimist, I have booked a trip to Italy to celebrate my 70th birthday in September... Oh, and my son and his partner have come over from New York to spend time with me, which makes me VERY happy.
Best wishes to all for the new year...... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 01-13-2022, 05:09 PM   #2
jaykay
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Join Date: Oct 2012
Posts: 646
Re: The party's over?

Oh Pam, what a way to start the new year. I’m betting on you to celebrate your 70th in Italy in September!

Best,
Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 01-18-2022, 06:47 PM   #3
jacqueline1102
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Posts: 183
Re: The party's over?

Oh Pam. I have no words. It sucks to be stable for 10 years and then this news. I respect your Zen. Enjoy the time with you son and partner. And I wish that September comes and you will be in Italy enjoying the gorgerou scenary and having a glass of wine.

Warmly,

Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 02-12-2022, 11:06 PM   #4
Catherine
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Location: Oregon
Posts: 715
Re: The party's over?

Oh, Pam so sorry to hear this. I am thinking of your Zen moments and your future trip to Italy in September. Wishing you warm hugs and love from all your friends. Keep the zen flowing❤️
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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
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Old 03-10-2022, 07:25 AM   #5
smim
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Posts: 16
Re: The party's over?

Well if I read you right, I think I shall wish you a wonderful time in Italy, and time with your family close by. Minimal side effects from the treatment and a lot of Zen (and pizza).
smim
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Old 07-27-2022, 02:24 AM   #6
KrissSchmidt
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Posts: 3
Re: The party's over?

I'm sure everything will be good!
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Old 09-05-2022, 12:29 PM   #7
tricia keegan
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Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: The party's over?

So sorry to read this Pam, it's a while since I visited the site so only seeing your post now. Wishing you a great response to your treatment and a wonderful time in Italy.
__________________
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!
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Old 09-06-2022, 04:24 PM   #8
Pamelamary
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Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
Re: The party's over?

Hi to my Her2 family,
I haven't done much updating lately... So much happening, and the demands of treatment have been arduous. Unfortunately recent MRIs have shown tumour growth and there aren't many options available.
Meanwhile, no further trips possible, but I am able to do most of the things I enjoy, albeit at a slower pace. There is some satisfaction in that it won't be the breast cancer that kills me!
I have enjoyed the support and connection with this group and send best wishes to all..... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 09-10-2022, 04:29 PM   #9
Mary Jo
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Location: Sheboygan, WI
Posts: 2,582
Re: The party's over?

The Peace of Lord be with you.

Love, 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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Old 09-10-2022, 04:33 PM   #10
Mary Jo
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Location: Sheboygan, WI
Posts: 2,582
Re: The party's over?

The peace of the Lord be with you dear “sister!”

Love, 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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Old 08-03-2023, 02:16 PM   #11
Laurel
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Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
Re: The party's over?

How are things going, Pam? I have been off the board for quite a while. Hoping you are still going strong!
__________________

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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Old 10-30-2023, 05:12 PM   #12
Bunty
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Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
Re: The party's over?

Hi Pamela, I have not been on the site in a long time. I'm sad to read your update. But you have some fight in you - Aussie Spirit. Sending much love. Marie in Sydney.
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