 |
10-09-2009, 12:50 AM
|
#1
|
|
Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
|
prolonged use of aromatase inhibitors after 5 years
Hi all,
Over the next couple of months I'm going to have to make up my mind about continuing on an AI, after 5 years.
I'm trying to make a pro's and con's list. Could you help me add to it?
Pro:
A sense of "doing something" to keep breastcancer away
Possible protection against recurrence
I don't have problems with side effects, they are mild
I forgot my Zoladex shot in June and my periods haven't returned, so I'm probably post-menopausal anyway (just had a bloodtest today)
Con:
Oestrogen may protect me against heart disease and other ailments
No More Pills
There's a chance that AI's may upregulate the Her2 pathway
We don't know about the long term effects yet
Any other reasons why I should or shouldn't?
Any references or new research I should read?
Thanks for your help
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
|
|
|
|
10-09-2009, 06:42 AM
|
#2
|
|
Senior Member
Join Date: Aug 2006
Posts: 3,380
|
Re: prolonged use of aromatase inhibitors after 5 years
AI's contribute to bone loss, resulting in osteopenia or possibly osteoporosis, so there is bone health to consider.
Hopeful
|
|
|
|
|
10-09-2009, 06:48 AM
|
#3
|
|
Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
|
Re: prolonged use of aromatase inhibitors after 5 years
Ah, good point. Thanx! I do have slight osteopenia.
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
|
|
|
|
|
10-09-2009, 10:17 AM
|
#4
|
|
Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
|
Re: prolonged use of aromatase inhibitors after 5 years
If I were you (and I know I am not  , I might try to take a break to see if I could strengthen my bones a little bit first. Because of my recurrence (due to missed tumor - though with 'clean' margin,) I don't see that much importance of those 'anti-estrogen' medicine. What about the bone-strengthening medicine? Can't you get something to treat the osteopenia by improving your bone strength?
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
|
|
|
|
|
10-09-2009, 12:39 PM
|
#5
|
|
Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
|
Re: prolonged use of aromatase inhibitors after 5 years
Hi Jackie,
I am leaning towards a break as well. My bone deterioration seemed to stop after 2 years on an AI, so hopefully it's still stable. I won't take bisphosphonates because I already have had severe jaw problems due to bad dental treatment 15 years ago. I had a huge abcess in my right upper jaw, lost a tooth and am fighting to keep two others. I'm very alleric, so implants or dentures are a no-no. Don't want to risk getting ONJ.
BTW, exercise helped with my bones, I think. I had my Dexa scan after I started running and there was a slight improvement in bone density.
Thanks for your thoughts!
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
|
|
|
|
|
10-10-2009, 05:34 PM
|
#6
|
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
Re: prolonged use of aromatase inhibitors after 5 years
I just finished my almost 2 year treatments of Forteo...self injected daily...bone strengthener. I saw significant improvement (for me!!!) in my DEXA scans. Forteo is not a bisphosphonate...Now, after the bone treatments were successful for me, I just had a once a year infusion of Reclast (which IS a bisphosphonate) which is supposed to stabilize the bones. My onc. says I will not need to stay on Arimidex after my 5 years because I was stage 1. I will face this decision next year. Already I feel like with out Arimidex I will be taking nothing for treating cancer...which might be a good thing, eh???!!! 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!!
|
|
|
|
|
10-10-2009, 06:53 PM
|
#7
|
|
Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
|
Re: prolonged use of aromatase inhibitors after 5 years
From the beginning, even when we thought my ER could be quite low, my onc felt it was still beneficial to take the AI. At the 5 year mark, he opted to continue the AI stating that some studies are looking at using the AI for ten years...again, feeling that the benefits were greater than the risks. I was stage 2B with a 4.5cm tumor.
__________________
__________________
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.
|
|
|
|
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 04:43 AM.
|
Linear Mode
