HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 09-19-2008, 07:41 AM   #1
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
Extending AI Treatment Beyond 5 yrs - Discussion w/my Onc

I had my normal check up on Wed. Sept 17. My onc is great and we will always have a conversation on one or two topics (usually of my choice). This time I brought up 2 things. One being the breast specific gamma imaging - aka Gammogram. The other was his thoughts and any concensus out there on continuing AI therapy beyond the prescribed 5 yrs (I am at 3 yrs on Arimidex now).

First, he told me there is a trial right now. The women on the trial are women who were taking Arimidex for 5 yrs instead of taking tamoxifen 5 yrs. Some of those women were randomized to continue Arimidex another 5 yrs. The other trial are women who took Tamoxifen 5 yrs and then took 5 yrs of Femara. Some of those Femara women were randomized to take another 5 yrs of Femara. He told me the results won't be ready for another 2-4 yrs. However, he will be continuing some of his patients on an AI (remember they were just approved for use in non-metastatic women in October, 2004 so some patients are almost at 4 yrs of use). Anyway, he plans on keeping me on an AI and switching me to Aromosin at 5 yrs (due to the Efects trial). He told me if for some reason I can't tolerate Aromosin (as I have no joint pain etc from Arimidex), he will just switch me back. He said if the trials show no added benefit (even though I would be on an extra 2 yrs or so), then we would just stop. His criteria for continuation will be age of woman (if younger than 50 when diagnosed there is a long anticipated life span to consider), does the woman currently have severe issues that one must consider the potential good of continuing is less than the potential bad of continuing - meaning - is joint pain debiliating? Bad cholestrol side effect, severe and uncontrollable bone loss? He said that some Her2 negative women who are highly ER+/PR+ but have alot of issues with AI but never took tamoxifen he might put them on tamoxifen or Evista after the 5 yrs of AI. It is a case by case basis.

So, have that discussion with your oncs and see what their thoughts are. His (or mine) might change in the 2 yrs I have left to be on Arimidex but that is what we discussed this time.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
Becky is offline   Reply With Quote
Old 09-19-2008, 08:29 AM   #2
Sheila
Senior Member
 
Sheila's Avatar
 
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
Becky
I think this way be the new wave for ER+ women
I have always felt that my Mom is a pioneer in this field...she was on Tamoxifen 17 years....she is almost to 21 years as a survivor and never had a recurrence, she probably was not Her2+ as they did not test for it back then....and she had no chemo, even with 13 positive nodes...just a RADICAL (and I mean that) mastectomy and Tamoxifen
so kudos to you for taking charge and looking into it!
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
Sheila is offline   Reply With Quote
Old 09-19-2008, 09:21 AM   #3
Margerie
Senior Member
 
Margerie's Avatar
 
Join Date: Aug 2006
Posts: 492
Way back when I first met my oncologist, he recommended an ooph and Arimidex for 5 years. He also said that after 5 years, he would probably recommend switching to another AI for another 5 years depending on what studies are showing. We will cross that bridge when we get there. I am 2.5 years into my 5 years of Arimidex. Thankfully, I do not have too many problems with the Arimidex (the new blister pack not withstanding) and my bone density and cholesterol are still good.

I was thinking that since ER+ seems to like to recur 7 years+ it makes sense to stay on AI's longer than 5. I am just glad that they are trying to figure out what to do with all the women who are 5+years out NED.

Thanks for taking the time to post your discussion Becky. Your onc sounds like a gem!
__________________
Are we there yet?


Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07

Last edited by Margerie; 09-19-2008 at 09:25 AM..
Margerie is offline   Reply With Quote
Old 09-19-2008, 01:44 PM   #4
tricia keegan
Senior Member
 
tricia keegan's Avatar
 
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Thanks for the info Becky, I won't be seeing my onc until December but do intend discussing this then. I do have some minor bone loss and stiffness/joint pain but nothing I can't handle at this point. Looking on the bright side if I'm still NED at five years I'd really like to stay on arimidex despite any side effcts!
__________________
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!
tricia keegan is offline   Reply With Quote
Old 09-19-2008, 07:12 PM   #5
Donna
Senior Member
 
Donna's Avatar
 
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
I think it would matter...

Hi Becky,

Your post made me wonder about the weight and age of the woman as well since, well, here's a quote from PubMed on it:

"Adipose tissue is the principal site of estrogen formation in postmenopausal women; with advancing age as well as with increased body weight, there is an increase in the fractional conversion of circulating androstenedione to estrone."

So I would think not only is the weight going to be a factor, but age seems to step up the production, too. If mere aging increases aromatase conversion, and if a person is overweight - I read that as a "yikes!"

It will be interesting to see what these new trials bring to the table.

Thanks for the information and the thoughts.

Donna
__________________
Donna in the Sierra Foothills of California

Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
Donna is offline   Reply With Quote
Old 09-19-2008, 08:17 PM   #6
Barbara2
Senior Member
 
Barbara2's Avatar
 
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
Cool

(I'm not sure how this little face appeared in the heading, but I can't make it go away!)

I reached 5 years of Arimidex this past March 2008. My onc said he would prefer that I continue the Arimidex (rather than not taking it anymore). He felt that it was important to keep knocking down the ER+.

We had been discussing hypothyroidism, and I mentioned the ongoing battle of trying to lose weight, and he agreed that excess weight and ER+ is another reason to continue with the Arimidex.

He had his nurse look into trials for people who had been on Arimidex for 5 years. She found one that uses a placebo with 1/2 of the participants, the other half get letrozole. We didn't discuss the details because we knew that I would not be interested in taking a chance of getting the placebo. That was the only trial she mentioned.

I thought that maybe at my next 3 month visit, I may ask what he thinks about changing to Letrozole (Femara). There is probably little or no difference between Arimidex and Letrozole, so I'm not sure why one would want to switch.

Becky, could you please elaborate on the discussion you had with your onc concerning Aromasin and the Efects trial. What did the trail show?

I understand that Aromasin contains 25 mg of exemestane, an irreversible, steroidal aromatase inactivator, but what exactly that means, I'm not sure.
"Steroidal" would probably pack on more pounds!....?
__________________
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.

Last edited by Barbara2; 09-19-2008 at 08:20 PM..
Barbara2 is offline   Reply With Quote
Old 09-19-2008, 08:31 PM   #7
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
The Efects trial used hormone positive metastatic women who failed on Arimidex. Half were give Faslodex shots and the other half were given Aromosin. Astro Zeneca was probably hopeful that Faslodex would "win" since it not only makes Faslodex but the "failed" Arimidex (thereby keeping the business). The trial showed Faslodex and Aromosin to be equal in effect. What the trial showed was metastatic women who fail Arimidex can switch to another pill form of anti-hormonal (as Faslodex is a shot).

Aromosin works in a different way (biochemically) to suppress the action of aromatase than Arimidex and Femara work (they are different drugs but work the same way). I don't know if one or another causes more weight gain or not.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
Becky is offline   Reply With Quote
Old 09-20-2008, 09:59 PM   #8
Cheryl E
Senior Member
 
Join Date: Sep 2005
Posts: 26
Wink

This month is my 5th anniversary on Femara. Last year, when I asked what would happen after 5 years, he replied that MD Anderson was keeping women on femara 7 years without any complications and they were looking into 10 years. I will see my onc in a few weeks for my regular check up and see what he says. I was dx in 3/03 and therefore never recieved herceptin. Aside from mild osteopenia, I have no complications from the femara.

Cheryl
Cheryl E is offline   Reply With Quote
Old 09-21-2008, 06:58 AM   #9
Mgarr
Senior Member
 
Mgarr's Avatar
 
Join Date: Dec 2005
Location: Michigan
Posts: 230
Images: 2
My mom (though a diff. age bracket) was on Tamoxifen for 5 yrs. and is taking Femara for 5 more she is about 2 1/2 yrs. in. She did have some initial joint pain and she backed off then her onc. cut the dose for some time and the pain subsided she has since gone back on the full dose and has not complained of any side effects. The one concern with the Femara has been loss of bone she is screened regulary and this last one showed some loss.

Best of luck with your decisions.

Mar
__________________
Mary


Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson

Mgarr is offline   Reply With Quote
Old 09-21-2008, 04:06 PM   #10
PatS
Senior Member
 
Join Date: Sep 2005
Location: Maine
Posts: 97
I've been on Arimidex for 5 years and my onc is having my continue.

Pat
PatS is offline   Reply With Quote
Old 09-21-2008, 06:24 PM   #11
Soccermom2006
Senior Member
 
Join Date: Jul 2006
Posts: 59
Was on tamoxifen for 6 months then switched to Arimidex and its been 3 years (just starting my 4th). Becky, your query is timely for me as my 6 mo visit w my Onc is soon and since my best friend recurred 5 years after finishing Tamoxifen its been weighing heavily on my mind, Thanks
Marcia
Soccermom2006 is offline   Reply With Quote
Old 09-23-2008, 01:30 PM   #12
Barbara2
Senior Member
 
Barbara2's Avatar
 
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
Aromatase Inhibitors: Are There Differences Between Steroidal and Nonsteroidal Aromat

I came across this today:

"Results from head-to-head trials comparing steroidal and nonsteroidal AIs will determine whether meaningful clinical differences in efficacy or adverse events exist between the classes of AI. This review summarizes the available evidence regarding known differences and evaluates their potential clinical impact."
http://theoncologist.alphamedpress.o.../full/13/8/829
__________________
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.
Barbara2 is offline   Reply With Quote
Old 09-25-2008, 06:02 AM   #13
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
Nice article.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
Becky is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 08:45 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter