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Topic: Afinitor/Aromasin 2013

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Feb 8, 2013 11:28AM

sueco wrote:

I am waiting for my pills to arrive and fearful of starting a chemo after almost seven years of anti-hormones.  I immediately started looking for info on this site, and the Afinitor topic was started in Jan. 8, 2012 with 35 pages of comments to go through.  Do you think it is possible to start a new topic now that this med combination has been just recently been approved by the FDA? 

Sue Dx 4/15/2006, Stage IV, mets, ER+ Hormonal Therapy 5/14/2006 Arimidex (anastrozole) Hormonal Therapy 8/17/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/19/2010 Faslodex (fulvestrant) Targeted Therapy 2/13/2013 Afinitor (everolimus) Radiation Therapy 1/14/2014 3DCRT: Bone Chemotherapy 2/16/2014 Xeloda (capecitabine) Chemotherapy 8/19/2015 Abraxane (albumin-bound or nab-paclitaxel)
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May 9, 2019 03:39PM - edited May 9, 2019 03:40PM by baywitch

I have decreased the number of rinses as well. If you take according to directions, you will run out in 2 weeks time. Just had to order an interim prescription to hold me over until my med delivery. Plan to use a couple times a day just to be safe, lol.

Kathy

"Not today, cancer". Dx 2/1994, DCIS, Right, <1cm, Stage 0, ER+/PR-, HER2- Surgery 5/19/1994 Mastectomy Dx 10/2017, Left, Stage IV, metastasized to bone, ER+/PR-, HER2- (IHC) Hormonal Therapy 4/21/2019 Aromasin (exemestane) Targeted Therapy 4/21/2019 Afinitor (everolimus) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (right): Free TRAM flap Hormonal Therapy Femara (letrozole) Targeted Therapy Kisqali
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May 9, 2019 06:14PM Nkb wrote:

bay witch- I had to fight a bit to get a months worth. I think just because it is 5 bottles which seems like a lot. It’s a special order at my pharmacy so I would have had to go in every 12 days and pay a new co-pay - they finally just gave me 5 bottles of it. I will keep tapering over next few days and then maybe off it since it will be 2 months.

How’s everyone else doing

Dx 1/2012, ILC, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Targeted Therapy 6/1/2017 Ibrance (palbociclib) Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Targeted Therapy 3/13/2019 Afinitor (everolimus)
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May 9, 2019 07:21PM baywitch wrote:

I am only on this med for 3 weeks, so I will continue for a bit. Haven't had any problems yet, but not interested in tempting fate. I think my script said to use for the first 8 weeks.

Kathy

"Not today, cancer". Dx 2/1994, DCIS, Right, <1cm, Stage 0, ER+/PR-, HER2- Surgery 5/19/1994 Mastectomy Dx 10/2017, Left, Stage IV, metastasized to bone, ER+/PR-, HER2- (IHC) Hormonal Therapy 4/21/2019 Aromasin (exemestane) Targeted Therapy 4/21/2019 Afinitor (everolimus) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (right): Free TRAM flap Hormonal Therapy Femara (letrozole) Targeted Therapy Kisqali
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May 19, 2019 01:35PM baywitch wrote:

Hi ladies ... 4 weeks in and just started getting tiny red bumps all over my shoulders and neck. No itching, fortunately. Anyone else experiencing this??

Kathy

"Not today, cancer". Dx 2/1994, DCIS, Right, <1cm, Stage 0, ER+/PR-, HER2- Surgery 5/19/1994 Mastectomy Dx 10/2017, Left, Stage IV, metastasized to bone, ER+/PR-, HER2- (IHC) Hormonal Therapy 4/21/2019 Aromasin (exemestane) Targeted Therapy 4/21/2019 Afinitor (everolimus) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (right): Free TRAM flap Hormonal Therapy Femara (letrozole) Targeted Therapy Kisqali
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May 19, 2019 05:12PM Nkb wrote:

Baywitch- I’ve had several weird rashes. Most don’t last very long. I currently have an itchy one on both sides of my neck- like an allergic reaction. I used steroid cream and the itching is gone, rash remains yesterday half of my pinky went numb and I noticed a sudden bruise the numbness lasted about 30 minutes- bruise is fading Strange mysteries

How’s it going otherwise?

Dx 1/2012, ILC, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Targeted Therapy 6/1/2017 Ibrance (palbociclib) Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Targeted Therapy 3/13/2019 Afinitor (everolimus)
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May 19, 2019 07:07PM baywitch wrote:

Nkb ... otherwise feeling pretty good. It's really the only SE I have experienced so far other than some fatigue. It doesn't itch, but I am aware of it, almost like a sunburn. Took a Benadryl and hoping that takes care of it. Are you doing OK otherwise? It looks like you haven't been on this one long either. Hoping for a good run - Kisqali lasted me 18 months.

Kathy

"Not today, cancer". Dx 2/1994, DCIS, Right, <1cm, Stage 0, ER+/PR-, HER2- Surgery 5/19/1994 Mastectomy Dx 10/2017, Left, Stage IV, metastasized to bone, ER+/PR-, HER2- (IHC) Hormonal Therapy 4/21/2019 Aromasin (exemestane) Targeted Therapy 4/21/2019 Afinitor (everolimus) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (right): Free TRAM flap Hormonal Therapy Femara (letrozole) Targeted Therapy Kisqali
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May 19, 2019 11:33PM Nkb wrote:

Baywitch- I am starting month 3 on AA. I was on Ibrance and Faslodex for 18 months. The aromasin causes some joint aches and I have fatigue also - otherwise I feel pretty good.

I hope it works! I will probably have a PET in another month or two. The first month the TMs went down. The cholesterol went up a little- will check that again next cycle. Your labs ok

Dx 1/2012, ILC, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Targeted Therapy 6/1/2017 Ibrance (palbociclib) Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Targeted Therapy 3/13/2019 Afinitor (everolimus)
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May 20, 2019 11:50AM baywitch wrote:

Nkb ... haven't had any yet since starting. Early next month will be my first ones. TMs went up last time quite a bit, but I was off all meds for a few weeks during the transition to Afinitor. We'll see ...

"Not today, cancer". Dx 2/1994, DCIS, Right, <1cm, Stage 0, ER+/PR-, HER2- Surgery 5/19/1994 Mastectomy Dx 10/2017, Left, Stage IV, metastasized to bone, ER+/PR-, HER2- (IHC) Hormonal Therapy 4/21/2019 Aromasin (exemestane) Targeted Therapy 4/21/2019 Afinitor (everolimus) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (right): Free TRAM flap Hormonal Therapy Femara (letrozole) Targeted Therapy Kisqali
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Jul 12, 2019 02:45PM Nkb wrote:

Charlotte 45, Baywitch, mason- how are you doing?

There seems to be a second afinitor thread which I posted my great PET results! Also TMs down 40%! Have been taking it 4 months. I Feel good.

Wondering how everyone else is doing?

Dx 1/2012, ILC, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Targeted Therapy 6/1/2017 Ibrance (palbociclib) Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Targeted Therapy 3/13/2019 Afinitor (everolimus)
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Jul 12, 2019 05:02PM theresa45 wrote:

Congrats nkb!!! I'm thrilled that A/A is working for you!!! Tumor markers down 40% is an amazing result!!

I'm considering A/A as a future treatment due to my PTEN and PIK3CA somatic mutations. However, I also have an ESR1 mutation which means that the Aromasin side of the treatment will likely not work and I progressed quickly on Faslodex/Ibrance, so Faslodex might not work.

Your awesome news brought a big smile to my face. Thanks for sharing!

Theresa

Dx 4/20/2009, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jul 12, 2019 07:07PM Cure-ious wrote:

Nkb- thanks for posting, it is very good news to hear that AA can work well after I-F: do you know which mutations are prevalent in the cancer? Pi3K, ESR1, etc? Hope it works for a long long time

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-
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Jul 12, 2019 08:02PM Nkb wrote:

Theresa45 and Curious- I don't know what mutations I have. I did Arimidex for 4 1/2 years and when I progressed to bone mets was put on Fulvestrant and Ibrance which worked for 18 cycles. When I went to the specialist at UCSF and asked about doing a foundation 1 test or other test she said that she didn't care what the report said she would still recommend AA. So, I didn't do it yet. I could very well have a ESR1 mutation, probably have a Pi3K, but, I don't know. I would do it if I progressed again. I am still bone and bone marrow only so it would be on blood. Theresa maybe oral faslodex will do the trick when it is available. I was skeptical about an AI with my two previous treatments- but, something is working.

I made it past the 4 months and hoping to get past the 7 months median!- the PET said all areas stable, regressed or resolved!

Curious- I am going to send those quilt pictures to you soon. (and order more fabric!)

Dx 1/2012, ILC, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Targeted Therapy 6/1/2017 Ibrance (palbociclib) Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Targeted Therapy 3/13/2019 Afinitor (everolimus)
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Jul 12, 2019 08:41PM theresa45 wrote:

Nkb - Thanks for sharing your experience. I'm so happy that A/A is working for you and has been tolerable too! It's good to know that A/A can work even after progressing on Arimidex and Faslodex. I'm currently on a Phase 1 trial of one of the oral SERDs (G1 Therapeutics G1T48). I've only been on the trial for 2 weeks, but I have a visible met (bump) on my sternum that seems to be progressing. Ugh! I will be scanned after 8 weeks on the trial. I hope that A/A continues to work for you with minimal side effects! On one of the OncLive broadcasts, an oncologist (Joyce) mentioned that, in her experience, treatment with Afinitor can re-sensitize cancers to hormone therapy. So, if a Guardant 360 blood test reveals a PIK3CA mutation, then Piqray + hormone therapy may be an option for you. Theresa

Dx 4/20/2009, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jul 12, 2019 10:51PM Nkb wrote:

theresa- I hope no more progresssion. we need these treatments to work longer.It was probably Joyce O’Shawnessy- she is on a lot of those podcasts. Super smart woman- yes, that is what I heard about the afinitor also in regards to the AI.

Dx 1/2012, ILC, Stage IIIC, Grade 2, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, Stage IV, metastasized to bone/other, ER+/PR-, HER2- Targeted Therapy 6/1/2017 Ibrance (palbociclib) Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Targeted Therapy 3/13/2019 Afinitor (everolimus)
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Jul 13, 2019 10:25AM theresa45 wrote:

Nkb - Thanks for the well wishes. The oncologist was Joyce O'Shawnessy.

Dx 4/20/2009, IDC, <1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jul 17, 2019 12:57PM masonsmawmaw wrote:

Help! Just looking for some guidance as I am basically clueless. Recent Guardant360 blood test results:

Alteration % of DNA or Amplification Associated FDA approved therapies Clinical Trial Availability

ESR1 D538G 0.04% Fulvestrant Yes

TP53 A159P 2.5% None Yes

TP53A151G 2.4% None Yes

The list goes on with other TP53 letters/numbers but all are at or below 0.2%. I asked onc what the super low percentage on the ESR1 meant and she said she didn't know but had reached out to the company to ask. She is tentatively recommending a trial of oral Fulvestrant and Femara/Ibrance or Aleseritib/Faslodex (not sure if spelling is correct.

First line treatment was Faslodex and Ibrance for about 38 cycles. Some progression in ribs so she switched to Affinitor/Aromasin. Been on that regimen since late October 2018. Recent scan indicated mild abdominal ascites, but this problem is worsening daily and I have an US scheduled for August 1st. As of now, I am still considered bone only mets.

Looking for any info on the Guardant blood test as well as your thoughts about my abdominal ascites/tenderness/pain. This is also from the CT report:

Abdomen / Pelvis: Physiologic FDG activity is identified in the
genitourinary tract and bowel. Small foci of air in the right pericolic
gutter is favored to represent intraluminal gas. There are thickened loops
of small bowel in the lower abdomen (image 177), concerning for enteritis.
No metabolically active abdominal or pelvic lymphadenopathy. No
intraperitoneal masses. Small volume ascites is new from prior. Anasarca.

I take Lasix daily for fluid buildup but no relief in the abdomen......

TIA for your feedback and hope everyone has a great day!

MM

Dx 1/6/2001, DCIS, Right, 1cm, Stage 0, 0/2 nodes, ER+/PR- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR+, HER2- Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)

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