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Old 01-14-2017, 03:51 PM   #1
sassy
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Location: Mountains of Virginia
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Still around and Kicking! Evista Question

Sorry I have been quiet of late, I look in, but have not posted much. I'm enjoying life with my new titanium legs!

Next month I will celebrate 12 years NED from Stage III, Triple Positive. It is fantastic to see all the double digit survivors on the site.

I recently began Evista (Raloxifene) and am wondering if anyone has experience with this drug and possible side effects.

My best to all of you!
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!

Last edited by sassy; 01-14-2017 at 05:47 PM..
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Old 01-15-2017, 09:25 AM   #2
Melissa
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Re: Still around and Kicking! Evista Question

Congratulations Sassy!
You and many others here have been an inspiration to me.

On this board there are many overcoming and enduring, they are Heros and you're one of them!

I have no information on evista but will ask more questions about the drug.

To a long, happy life!
Melissa
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Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2020 a 14 years NED
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Old 01-15-2017, 01:50 PM   #3
tricia keegan
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Re: Still around and Kicking! Evista Question

Many congrats Sassy and I'll be catching up with you in the summer! All I know about Raloxifene is that it's great for bones so sorry I can't help with that but delighted with your good news.
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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 01-15-2017, 04:01 PM   #4
Mtngrl
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Re: Still around and Kicking! Evista Question

Thanks for stopping in with your good news, Sassy!

All the best,
Amy
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Old 01-15-2017, 05:59 PM   #5
MaineRottweilers
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Re: Still around and Kicking! Evista Question

Congratulations, Rhonda! I'm so glad you stopped in. I'm sorry I do not have any experience with the drugs you mentioned.
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

//
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Old 01-15-2017, 10:42 PM   #6
donocco
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Re: Still around and Kicking! Evista Question

Rhonda

I remember researching Evista many years ago. Im sure you realize Tamoxifen is being used for breast cancer prevention. Im going now by memory but as far as I know Evista = Tamoxifen minus one action. Evista doesnt increase the risk of uterine cancer like Tamoxifen does. If Tamoxifen prevents breast cancer, Evista SHOULD and with less risk.
This is theoretical Im not aware of clinical studies with Evista as a preventitive.

Paul
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Old 01-16-2017, 01:15 PM   #7
tricia keegan
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Re: Still around and Kicking! Evista Question

I think I remember reading that this med does reduce the risk of breastcancer but in those that have never been diagnosed but some Onc's prescribe it for patients who are unable to take Tamox or have bad bone loss.
__________________
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 01-17-2017, 12:58 PM   #8
Gerri
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Re: Still around and Kicking! Evista Question

Hi Sassy,

Nice to see you still around and kicking with your new titanium legs! I just passed my 11 year mark in December and still NED.

I have been on Evista for almost 5 years now with no side effects. Having said that, I also tolerated Tamxifen and Femara well. My onc took me off of Femara because he was concerned about my bone denisty. I had been dx'd with osteopenia several years prior and had just undergone two total knee replacement surgeries in 2011. He felt that Evista (like Tamoxifen) would possibly strenghten my bones. I am happy to report that my DEXA in February of last year showed my bone denisty in the normal range.

I also read that Evista is prescribed for prevention of bc in high risk patients who do not have a history of bc. My onc feels there is a good chance it may also prevent recurrence even though he does not know of any studies that support this theory. I'm hoping it does offer some level of protection.

I hope this is an easy drug for you to tolerate. Wishing you all the best.

Gerri
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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Old 01-22-2017, 10:54 AM   #9
karen z
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Re: Still around and Kicking! Evista Question

Hi Sassy Rhonda,

So glad for the update. You sound good (and look good) and I am so happy you are at 12 years out. I love your beautiful pic.

I am doing all right. I finally (!) retired from my university on Dec. 1st. I know find myself in the world of fixing up the house to put on the market and looking for an apartment around here for one year while my daughter takes a gap year (she graduates form Ohio Wesleyan this May and will take a gap year before applying to law schools). I am good and (if all goes well) will hit the 12 year mark in about four months. Love, K
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