 |
11-27-2007, 09:05 AM
|
#1
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
after 5 years on AIs, what?
One more year to go?
Next year will be my 4th year on the Aromatase inhibitor, Femara. Since I've read an article on this site saying you have to balance the AI and Herceptin or the other one will uptick, what happens? Is there something to take after you finish 5 years? or should you stop both Herceptin and the AI? and wait and hold your breath! can you change to a different AI?
I'm sure this must have been discussed at length already on the site but my searching didn't come up with this.
thanks for any thoughts, experience or whatever
sarah
HER2+++, ER+, PR+
invasive cancer recurrance in 2004
|
|
|
|
11-27-2007, 01:39 PM
|
#2
|
|
Junior Member
Join Date: Nov 2004
Posts: 2
|
I have taken Femara for 5 years now and I am wondering if anybody has continued
taking this medication longer than that? I remain cancer free and just don't know what to do next. My oncologist is also not sure, as there are no statistics yet in this regard.
Trudy
|
|
|
|
|
11-27-2007, 03:43 PM
|
#3
|
|
Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
|
This worries me too!
I have been on Femara going on six years in April. I have been NED for a little over 2 years now, but no where near ready to feel comfortable enough to stop taking the Femara or Herceptin.
Unfortunately, it looks like we are in uncharted territory when it comes to this stuff, guinea pigs if you will....But I'm thankful just to be here and guess I will just deal with whatever comes along, whenever it gets here.
My last bone density showed that I was just reaching the osteopenia stage, but I guess that's not too bad considering the high dose chemo that through me into menopause at age 42 almost 11 years ago.
Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
|
|
|
|
|
12-22-2007, 01:46 AM
|
#4
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
thanks Kim, I feel the same. I want to continue on Herceptin and Femara but wonder what they will say here.
I guess most people on this site are ER- since you are the only who has an answer.
sarah
|
|
|
|
|
12-22-2007, 06:53 AM
|
#5
|
|
Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
|
I have been on arimidex first, now aromasin since last March, having many side effets with both. Wondering what happens if you can not take these drugs? Arimidex caused such joint pain it was difficult to do my daily tasks and work. Aromasin is causing extensive bruising and joint pain. I have read the femera side effects are about the same. I cannot imagine being on these for five years and feeling so bad. Don't know what to do.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
|
|
|
|
|
12-22-2007, 08:13 AM
|
#6
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
Have you tried taking your AIs at night? I take Femara at night. Have had bone loss but now I'm also taking Clastoban which has helped that - improved the bone.
|
|
|
|
|
12-22-2007, 01:43 PM
|
#7
|
|
Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
|
I'll post a question I asked of Dr. Pegram this past Spring:
Are the AI’s apt to stop working over time?
No, in fact right now they’re doing studies of 10 years vs. 5 years because in contrast to Tamoxifen which does apparently sort of “stop working” after 5 years, the AI’s may be a different story. They may continue to work. They work for at least 5 years and now there are big studies looking out to 10. There’s some theoretical rational why longer might actually be better with AIs. There may be a little hint of something that comes out from the longer term studies by next year .
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
|
|
|
|
|
12-22-2007, 03:09 PM
|
#8
|
|
Senior Member
Join Date: Mar 2006
Posts: 4,778
|
The theory that more than 5 years of tamoxifen was no better and perhaps worse than 5
years, was recently refuted in the ATLAS study I believe. I will try to post a link to it.
|
|
|
|
|
12-23-2007, 06:22 AM
|
#10
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
well I know all of us ER+ will be anxiously waiting to get the news on AIs for longer than 5 years.
sarah
|
|
|
|
|
12-23-2007, 10:42 AM
|
#11
|
|
Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
|
I am currently on Arimidex and plan to switch to a different one when my five years are up. I would also be on herceptin indefinitely if it were not for heart issues. I can't imagine any metatastic patient being without these drugs for the long term?
Cathy
__________________
Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 02:01 PM.
|
Linear Mode
