Join Us

We are 218,036 members in 84 forums discussing 160,860 topics.

Help with Abbreviations

Topic: Feeling lonely with Faslodex/Fulvestrant

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Jan 25, 2019 05:09AM

Misstic wrote:

I was diagnosed stage IIIC last year with a recurrence in a reconstructed breast with several tumors in skin and parenchyma. Due to this rare condition, my doctors decided to give me Faslodex for the next 10 years because I was having Tamoxifen when I had my recurrence. Previously, I did a rare chemo regimen which worked beyond expectations because of a very low Ki67: 100% tumoral response. So now I am in remission and doctors want to give me Ibrance with Faslodex . After reading a lot of clinical studies, I see that the risk/benefit balance is not so good at the moment for my very specific case (it may change after I will have a new reconstruction). So I declined Ibrance but do Faslodex. I feel very lonely in this treatment:

- after reading numbers of topics, I see Faslodex/Fulvestrant alone is not the standard treatment (most Fulvestrant+Ibrance).

- I couldn't even find one woman in this community who is not stage IV doing Faslodex.

It would be comforting if women at my stage or lower with Fulvestrant could explain their case.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Page 1 of 2 (35 results)

Posts 1 - 30 (35 total)

Log in to post a reply

Jan 25, 2019 01:07PM Annbee wrote:

Hi Missic, I am stage IIIa and after a year of the aromatase inhibitors and the unbearable side effects, I am now on Faslodex. I don’t think there are many of us with stage III using it. My MO said that I am the her onlypatient. She has a huge patient load. The only reason I am on it was that I called my insurance company and told them I needed this because I was not going to take anymore aromatase inhibitors. I was went through all theee aromatase inhibitors and spent most of the year in the orthopedic’s office and physical therapy. I had to switch orthopedics because my first one thought I was crazy. My current one said that as long as I take the aromatase I will be fighting a constant battle with joint pain. I have also noticed that they raised my heart rate. That has gotten back down into the normal range. Thank you for posting. I thought I was the only one too.

Dx 1/12/2017, IDC, Left, 1cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2- Surgery 2/15/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/10/2017 AC + T (Taxol) Radiation Therapy Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy Whole-breast
Log in to post a reply

Jan 26, 2019 03:30AM - edited Jan 26, 2019 05:04AM by Misstic

Thank you Annbee. It is so nice to see someone having this hormone therapy.

I never had AI but I had severe adverse effects with Tamoxifen. Like you, I find Fulvestrant pretty much easy (even if I'm a "newbie") : no ache pain, no nausea, no headache, just 3 days of discomfort in my buttock after injection.

I had a blood test and my neutrophil are now in a low range. My CA 15-3 never was so low too (9).

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Jan 26, 2019 07:20AM - edited Jan 26, 2019 07:22AM by Annbee

I have had 5 shots now by three different nurses. With one nurse, I never have any pain in the injection area but I will have nausea and fatigue. She goes very slowly when injecting. She has injected me three times. The other two times, by the other nurses I have zero nausea but I ended up with knots the size of eggs, bruising and a bit of a rash. No joint pain and my heart rate has gone down too. My MO said they are supposed to come out with a pill form. I had a lump removed from my left breast yesterday. BS said it doesn't look like cancer which is a relief. My bloodwork has been normal. My tumor markers never went above 30 when there was cancer in my body, now they are around 12.

Dx 1/12/2017, IDC, Left, 1cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2- Surgery 2/15/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/10/2017 AC + T (Taxol) Radiation Therapy Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy Whole-breast
Log in to post a reply

Jan 26, 2019 11:16AM Misstic wrote:

I understand that the nurse technique is very important. I put the syringes directly on my skin under my pants in my back before the nurse comes to heat the oil (like my MO told me). I don't know if it can help you: about pain at the injection site, my nurse told me to get a prescription of lydocain in patches (the same I got for my port during chemo). It alleviates the pain not only during the injection but after, she said. And I was advised to walk for 30 minutes after the injection. I wonder if your second nurse doesn't inject the drug enough deeply in your muscle...

It would be wonderful to get this by pill if nauseas aren't worst.

I have no fatigue neither nausea but I do keto diet and this is maybe the reason.

I am sorry about your lump and hope everything will be OK. I was in a similar situation yesterday: I had MRI + scan (mammograms are out of the way with my type of recurrence) and the radiologist found something suspect in my skin (nothing visible from the outside). I will got an ultrasound next thursday + a biopsy.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Jan 27, 2019 12:00AM Butfulady wrote:

Hello, I’m so glad I joined this community because what you wrote hit home for me. I am er+ Her2- and I did taxol for 9 months and then I took kisqali and fermara which locked my joints. I am now on faslodex and lupron. Yes it does help to warm the faslodex first, my nurses use a heated blanket while I get my port flushed and my lupron shot. I am stage four breast cancer, it spread to my lymph nodes and then to my lungs, liver and abdomen. I was told the faslodex shouldn’t cause joint pain but lately I feel like it’s hard to even get out of bed. My husband reads about all of these drugs but I ask him not to tell me the side effects so if I feel something new I can ask him to verify if I’m just crazy or depressed. I’m so glad to find you ladies Andy I know this letter is just all over but it’s hard to explain everything in a paragraph! I’ve had great pain since being on the Kisqali and fermara and it got better, I can use my thumbs now but my joints are starting to hurt again and I’ve been taking faslodex shots every month for almost a year now way and I’m shrinking my tumors but I can’t enjoy my life like I should be able to. But it’s working so what do I do? The kisqali didn’t not work. And hormone therapy and these shots will be the rest of my life! And I’m scared. I also was recently diagnosed with seizures. My only daughter graduates this year and I want to enjoy it. Every joint in my body aches.

Log in to post a reply

Jan 27, 2019 12:04AM Butfulady wrote:

Hello, I saw you have gotten knots with your shots sometime and I do to. This last month was the worst. And like you said she didn’t do anything different

Log in to post a reply

Jan 27, 2019 06:26AM Misstic wrote:

Welcome to this topic Butfulady. I hope you will able to find a solution for your ache pain. It is nice to hear that Faslodex shrunk your tumors.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Jan 30, 2019 03:18PM Annbee wrote:

Misstic I will be thinking of you tomorrow. Let us know how it goes.

Butfulkady- thinking of you too. So knots are normal.

Dx 1/12/2017, IDC, Left, 1cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2- Surgery 2/15/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/10/2017 AC + T (Taxol) Radiation Therapy Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy Whole-breast
Log in to post a reply

Feb 2, 2019 07:04AM Misstic wrote:

The ultrasound wasn't clear. I had a biopsy and the results are on Monday.

Waiting, waiting and waiting. Grrrr.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Feb 23, 2019 11:17AM Misstic wrote:

I forgot to tell the good news : the "thing" seen by scanner, MRI and ultrasound wasn't cancer. The report say "inflammatory tissu". Since they did the biopsy, the lump has doubled but stay stable since. New ultrasound in 3 months. I continue the Fulvestrant but see a new oncologist in a research center to assess this very strange treatment.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Feb 23, 2019 11:23AM Annbee wrote:

That is great news. I am very curious as to what you learn. I struggle with constipation and stomach issues from the faslodex. I can’t imagine having to be on this for years and years as a preventive. It is better than the aromatase inhibitors. Please keep me posted. I am the only stage 3 at my oncologists office using faslodex. I wonder about long term use.
Dx 1/12/2017, IDC, Left, 1cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2- Surgery 2/15/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/10/2017 AC + T (Taxol) Radiation Therapy Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy Whole-breast
Log in to post a reply

Feb 23, 2019 12:15PM Misstic wrote:

Thanks Annbee. I have no constipation, no nausea or stomach problem. But to be honest, I do ketogenic diet (which is known to make you feel in good shape and alleviate nausea) and take a small dose of CBD every day (anti inflammatory effects). But the first week after the injection, I have a little bit of joint and muscle pain and also feel a little tired.

There is a woman in the Stage IV section who takes Faslodex alone for 11 years now and is perfectly stable with her bone mets. She is doing great.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Feb 23, 2019 12:38PM Annbee wrote:

11 years, that makes me feel so much better. Thank you for sharing. I have been watching my carbs, processed foods for the past two months. Lost 10 pounds. The stomach issue is only for the first few days and not every month. Constipation is ongoing. I can live with it over the awful joint pain from the Aromatase inhibitors. I also have a bit of fatigue the first week. I may need to look into the CBD oil. I take an anti nausea med for a few days. I am so glad you started this thread.
Dx 1/12/2017, IDC, Left, 1cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2- Surgery 2/15/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/10/2017 AC + T (Taxol) Radiation Therapy Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy Whole-breast
Log in to post a reply

Mar 29, 2019 07:11PM Opt4Life wrote:

Hello all, I'm joining you here. I had a recurrence last January while on Aromasin so they have moved me to Faslodex. Had my first shot today, They are adding low dose Ibrance to the treatment in the next few weeks but wanted to see what if any side effects I had with the Faslodex first.

I am the lone non-Stage 4 patient my oncologist has doing this current regimen so am somewhat of a guinea pig. But my oncologist said that he strongly believes that this will be the standard of treatment in the future for recurrences and Stage III patients.

The nurse I had today was probably the best nurse I've had in a year. She found a vein on the first try for my bloodwork and I barely felt the 2 needles to my butt. Though I will admit I do have some extra padding back there so that could probably be it too. I'll get 2 more shots over the next 4 weeks and then will go to the standard monthly schedule.

Already, I am feeling better about getting a monthly shot than trying to remember to take my Aromasin every day.

Glad I found this thread.

Dx 10/2015, DCIS/IDC: Mucinous, Left, 4cm, Stage IIB, Grade 2, 3/5 nodes, ER+/PR+, HER2- Dx 1/19/2018, IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/7/2018 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Targeted Therapy 4/3/2019 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
Log in to post a reply

Mar 30, 2019 04:58AM Misstic wrote:

Hi Opt4Life,

Nice to see you joining the club of non stage IV in a Faslodex/Fulverstrant journey. I'm a stage IIIC, meaning I had metastasis in my skin and parenchyma, so they were only local. As the end point of the PALLAS trial is coming, we will be more and more in this group of low dose Ibrance with Fulvestrant, I think. Do you know which dose of Ibrance, they will give you ?

I will get the injection #4 in ten days and even yet without Ibrance my neutrophils lower each month.

For the butt pain, I use now lydocaine patches and it works wonderfully.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Mar 30, 2019 05:25AM Annbee wrote:

welcome opt4lige and hi misstic. We are a small group. I don’t take Ibrance just the shots. I get mine again this Friday and see my oncologist. last month they didn’t use the lydicaine sprayer numb the areas before but the shot, I will be asking for it this time. I need to check my neutrophils?
Dx 1/12/2017, IDC, Left, 1cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2- Surgery 2/15/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/10/2017 AC + T (Taxol) Radiation Therapy Hormonal Therapy Faslodex (fulvestrant) Radiation Therapy Whole-breast
Log in to post a reply

Apr 4, 2019 10:49AM Opt4Life wrote:

Hi ladies, thanks for welcoming me. I couldn't find any Fasodex/Ibrance threads for non-stage Stage IV.

I literally just took my first Ibrance pill today and its a full dose of 125 mg. However, my oncologist will be monitoring me closely and says i can step down should this have too many side effects. Yesterday, I received the pretty purple zip bag from Pfizer with all kinds of great information about Ibrance. I perused a few pages and put it away. I don't want to read anything that might deter me from taking this treatment.

My first injection wasn't bad at all. The nurse said she does them all the time and she proved that.

Ladies, I am a faithful person so am really, really praying and hoping that this treatment will keep me from having another recurrence or metastasizing. But I refuse to let cancer take another thing from me so I will do my best to not worry about what i can't control.

Again, thanks for welcoming me and have a great weekend!

Dx 10/2015, DCIS/IDC: Mucinous, Left, 4cm, Stage IIB, Grade 2, 3/5 nodes, ER+/PR+, HER2- Dx 1/19/2018, IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/7/2018 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Targeted Therapy 4/3/2019 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
Log in to post a reply

Apr 8, 2019 01:49AM - edited Apr 8, 2019 01:51AM by Misstic

Hello ladies,

Side effects have begun for me: fatigue but also muscle pain in my legs. I walked every days 7 km and climb 10 stairs is my daily routine to stay fit but there is no difference if I do or do not exercise. I'm going to try Tylenol.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

May 30, 2019 07:35PM BevJen wrote:

Cross posted with the Ibrance thread: is anyone on this thread on Medicare? Is Faslodex covered under Medicare Part B because it's administered in a doc's office? Or is it run through the Medicare Part D drug plan? I called Medicare today and they couldn't tell me (believe it or not).

Thanks.


Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
Log in to post a reply

Jun 3, 2019 03:05PM Misstic wrote:

Hi BevJen, I'm sorry I have no clue about this question because living in a foreign country.

I would be interested if someone has an idea about cramps and Faslodex. I tried potassium but it continues. I will try magnesium and streching from now. I walk a lot for exercising (7 km per day) and this is really problematic for me.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Jul 4, 2019 10:41AM Misstic wrote:

Some news. My last Petscan showed I'm still NED. MO decided to not put me under Ibrance so I am still on Faslodex (Fulvestrant) only.

7th shot today...

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Jul 4, 2019 10:57AM BevJen wrote:

Misstic,

Terrific news for you! That's great!

I've just had my second set of shots of Faslodex (still on two week loading doses -- one more to go on July 16th). I have not experienced cramps with this any more than I did when I was on letrozole (for 13 years), so it makes sense that this could be a side effect of any anti-estrogen therapy. I always just ate bananas, which seemed to help a bit.

My only side effect so far is that my urine, for about five days after, has a terrible smell.

I'm still not on Ibrance, and I hope I have your success with Faslodex -- I'm a little bit afraid of the SEs on Ibrance.


Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
Log in to post a reply

Jul 4, 2019 11:21AM Misstic wrote:

Thank you BevJen. Since I have magnesium, I feel a little bit better (less cramps but my muscle pain is still there after exercise).

It's funny you speak about your urine because I have the same effect. I also do keto diet which is well known for increasing urine volume.

I wish you the best with Faslodex.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Oct 10, 2019 06:44AM Misstic wrote:

Last Petscan two days ago showed that I'm still NED. I begin to believe I can can beat the beast.

Next Petscan in six month.

My MO planned Faslodex for the next 6 months.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Oct 10, 2019 06:52AM BevJen wrote:

Congrats on the great PET scan! Hope the next is just as good!

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
Log in to post a reply

Oct 10, 2019 07:00AM Misstic wrote:

Thank you BevJen.

My MO said to me that my cancer is very difficult to understand because I should be Stage IV but I'm not. I was in shock when she told me that but after a while, I took that like a compliment. At least, I'm defying the odds.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Oct 10, 2019 06:59PM dabbllle wrote:

Thanks, everyone, for sharing your experience. I'm Stage IV. Ibrance + Femara worked to contain my mets for 18 months, but now I need to try something else. Deciding between Tamoxifen and Faslodex. I appreciate all your posts.


Log in to post a reply

Oct 11, 2019 09:36PM - edited Oct 11, 2019 09:53PM by Amica

Dabbllle

I may be in the same situation. My last CT showed a new 1 cm mammary lymph node---so a progression. But my MO wants to do another CT which I am getting done next week, mid-October, to see if this new progression has stayed stable or not. She seemed to be saying that if it stays stable she would keep be on the Ibrance, Letrozole regime, which I have been on for about a year, but that scares me a bit since I have had a progression.

Otherwise she mentioned Faslodex or Tamoxifen as my two choices if I do need to switch to a second-line treatment. I read up on the Faslodex. Like all these drugs there seem to be an awful list of side effects, plus it is a shot which I don't like needles.

Let us know what you end up doing.

take care,

Amica


1998 Stage 2 IDC,1/16 nodes, ER/PR +, HER2-,Gr 3,finished tx 2010--Stage IV dx Aug 2018 sub-pectoral lymph nodes, Ibrance/Letrozle/Prolia. Dec/19 Mets Liver, Tamoxifen until Mar/20 mets progression, now on Faslodex only
Log in to post a reply

Oct 14, 2019 02:28PM Misstic wrote:

Hi Dabbile,

Is the plan of your MO to give you Faslodex with another CDK4/6 inhibitor (like Kisqali or Vernezio) ? I think in this case the only option is Faslodex because there is no clinical trial with Tamoxifen.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall
Log in to post a reply

Jun 5, 2020 10:15AM Misstic wrote:

I'm giving news just in case if other patients are in my case (and maybe with the fail of the PALLAS trial, there will be) : I had a petscan 3 weeks ago. NED again. Hooray !

When I was said that the nature of the cancer cells of my last recurrence (may 2019) couldn't be decided after being hormone positive for 5 years (ER+ 90%), I read all the Ibrance/Palbociclib trials publications. Before this small recurrence (5 mm cyst with very rare cancer cells), doctors wanted to give me the combo Faslodex + Ibrance. I understood by my readings that, in stage IV, the survival span was only 4 months with the adding of Ibrance to Faslodex vs Faslodex alone. Because of the bizarre cells of my recurrence, the staff decided I was not anymore a valuable candidate for Ibrance (my benefice/risk balance was not good). I was ok with this decision because I doubted a lot of the efficiency of Palbociclib in my case. My intuition was good.

I continue Faslodex + COC protocol + ketogenic (keto) diet.

Dx 6/26/2014, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 7/15/2014 Mastectomy: Left; Reconstruction (left) Chemotherapy 8/23/2014 Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 3/7/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 2/4/2016 Reconstruction (left): Fat grafting Dx 1/5/2018, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2018 Gemzar (gemcitabine), Navelbine (vinorelbine) Hormonal Therapy 1/10/2020 Faslodex (fulvestrant) Radiation Therapy Whole-breast: Lymph nodes, Chest wall

Page 1 of 2 (35 results)