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Old 05-09-2012, 07:31 AM   #1
kristen8594
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Posts: 27
vagifem?

Hello,
I am wondering if any of you ladies have been prescribed vagifem from your oncologist?
If so, what have your side effects been. My oncologist said it is considered safe after BC her 2/er,pr +.
I am worried and wanted advise from anybody that has considered it or is currently taking it....or took and had to get off it.
Thank you so much!
Kristen
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Dx 2003 age 42
lumpectomy 4/03
Clean margins 5/03
1.6 cm her2+++ er/pr +
1/13 node positive
A/C and Taxol Dose dense/8 treatments/ 3 months rads
finished treatments 12/31/03
tamoxifen 5years
Starting late herceptin 5/09
Finished one year herceptin 5/10
Waiting to start Femara
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Old 05-09-2012, 09:32 AM   #2
chekmark
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Re: vagifem?

I am currently on it, no side effects and it works pretty good. I have only been on it a few months and my oncologist said that there isn't enough estrogen in it to cause harm. Good luck.
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 05-09-2012, 10:13 AM   #3
kristen8594
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Re: vagifem?

Thank you for the reply. Even though my oncol said it would be safe I am worried.
What dosage are you on? Another reason I was concerned about is price. It's very
Expensive. I was also worried about weight gain. I would love for anybody else to chime in.
__________________
Dx 2003 age 42
lumpectomy 4/03
Clean margins 5/03
1.6 cm her2+++ er/pr +
1/13 node positive
A/C and Taxol Dose dense/8 treatments/ 3 months rads
finished treatments 12/31/03
tamoxifen 5years
Starting late herceptin 5/09
Finished one year herceptin 5/10
Waiting to start Femara
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Old 05-16-2012, 05:08 AM   #4
chekmark
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Re: vagifem?

My insurance covers it for me. I pay a 15.00 copay. After the first 2 weeks you only use is 2 times a week so a box will last for several months. I think there is only one strength. I have had some slight weight gain but I lost so much weight from the stress at the beginning of finding out that I had cancer that what I put on was what I had lost and the steroids made me gain a few more pounds but I am still ok. It has worked for me and made things alot better. I was so estrogen deprived that my body quickly absorbed it. My oncologist has prescribed it to alot of her patients and she reports that there have been no issues. Sorry it took me so long to respond this time, I have been out of town. Hope this helps. Good luck.
__________________
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 05-16-2012, 11:22 AM   #5
kristen8594
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Re: vagifem?

Thanks for the reply. My insurance covers some but it cost me $50 per month or $150 for a three month. I was hoping to spread the dosage out to last longer but at the same time I didn't know if it would work if I did that. I must confess I am really worried about weight gain. Since you said you had some weight gain that bothers me some. Weight just does not come off like it use to. I have worked out my whole life....I lift and do all kinds of cardio, mostly run....But now that I am 50 and in full menopause the weight is slow to move. In all my research there really isnt another product so I guess I will have to take my chances!
Thanks again,
Kristen
__________________
Dx 2003 age 42
lumpectomy 4/03
Clean margins 5/03
1.6 cm her2+++ er/pr +
1/13 node positive
A/C and Taxol Dose dense/8 treatments/ 3 months rads
finished treatments 12/31/03
tamoxifen 5years
Starting late herceptin 5/09
Finished one year herceptin 5/10
Waiting to start Femara
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Old 05-16-2012, 12:42 PM   #6
chekmark
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Re: vagifem?

I guess I never contributed the weight gain to the Vagifem. I started to gain it back before I started to take it. I am not gaining alot of weight if it is. I was told it was most likely the steroids. I am only about 5 lbs over where I started so I havent been to concerned but will definitely be on the lookout now. It has improved things for me and I am alot more comfortable. It did nothing for the hot flashes unfortunately. Its your decision. You can try it and if it doesnt work or you gain weight then stop taking it, its not something you have to take for your cancer. I wish I had better advise for you. This is just my experience. I wasnt told that the vagifem may cause me to gain weight. Good luck and keep us posted. Darlene
__________________
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 05-16-2012, 01:50 PM   #7
chekmark
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Posts: 334
Re: vagifem?

I also read recently that too much estrogen or not enough estrogen can cause weight gain. Since vagifem is not taken orally it most likely will not enter the blood stream therefore most likely will not cause weight gain, hope this helps. I do not think my weight gain is from the vagifem. I havent gained any additional weight for weeks, I just havent lost the extra 5 yet. Summer is here and I am alot more active now that surgeries are over so I am confident I will lose it.
__________________
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 05-26-2012, 10:33 PM   #8
SoCalGal
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Re: vagifem?

been using for a year plus. no weight gain. 10 mcg twice a week. side effects are slight hot flashes and or a headache if I forget to use it. Main side effect is ability to be a normal woman again!
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 05-28-2012, 11:13 AM   #9
StephN
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Location: Misty woods of WA State
Posts: 4,128
Re: vagifem?

Hi ladies -
Did you all start out with one pill a night for 14 days and then cut back to twice a week?
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 06-14-2012, 01:11 PM   #10
kristen8594
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Join Date: Dec 2005
Posts: 27
Re: vagifem?

my doctor has me starting out 2 twice weekly, and continue with that. The cost is very expensive $50 per month, but I think it will be worth it. I still havent started it yet!!
__________________
Dx 2003 age 42
lumpectomy 4/03
Clean margins 5/03
1.6 cm her2+++ er/pr +
1/13 node positive
A/C and Taxol Dose dense/8 treatments/ 3 months rads
finished treatments 12/31/03
tamoxifen 5years
Starting late herceptin 5/09
Finished one year herceptin 5/10
Waiting to start Femara
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