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All TopicsForum: Canadians Affected by Breast Cancer → Topic: Kisqali (ribociclib)

Topic: Kisqali (ribociclib)

Forum: Canadians Affected by Breast Cancer —

Canadian health care, clinical trials, and life in general in the north.

Posted on: Sep 13, 2017 08:01PM

flwr57 wrote:

Any Canadian Stage IV ladies receiving this drug in combination with letrozole as a first line treatment?

My oncologist suggested this study and I would appreciate hearing from any one who may be taking part and is willing to share their experiences.

Thanks!


Oncotype DX 18 (12%) Dx 1/3/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 1/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/18/2014 Lumpectomy: Right Radiation Therapy 5/7/2014 Breast Hormonal Therapy 7/1/2014 Arimidex (anastrozole) Dx 8/25/2017, IDC, Stage IV, metastasized to bone/liver/lungs
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Sep 15, 2017 09:16AM flwr57 wrote:

Hi Moderators,

Do you have any suggestions as to where I could post my question to get a response?


Oncotype DX 18 (12%) Dx 1/3/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 1/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/18/2014 Lumpectomy: Right Radiation Therapy 5/7/2014 Breast Hormonal Therapy 7/1/2014 Arimidex (anastrozole) Dx 8/25/2017, IDC, Stage IV, metastasized to bone/liver/lungs
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Sep 15, 2017 04:16PM AnimalCrackers wrote:

Hi flwr57 - I'm afraid there aren't many people on this board who are on Kisqali (ribociclib) let alone from Canada.  I am in a clinical trial for Kisqali and an oral SERD called LSZ102 (it's like faslodex but oral).  I have a thread for my clinical trial you can check out.  There is also a thread for people on Kisqali and letrozole but only a few people have posted there.  Most people are on Ibrance (palbociclib) and letrozole or faslodex.  Ibrance had earlier FDA approval and received most of the attention and lion's share of the market.  Ibrance failed me after a year so I went to the clinical trial in May.  

There are some very savvy people in the ibrance thread, bone mets thread and liver mets thread.  A lot of Canadians in those threads too.  You may want to check them out and post there.

Do you have more information on the study your oncologists are suggesting?

Welcome to BCO - sorry you are here but glad you found us.  There is a great support system here and tons of knowledgeable people.  Good luck.  I'll be looking for you on the other threads.

Cathy


Cathy, diagnosed Stage IV de novo June 2014 (age 52). Bone mets at initial diagnosis. Progression to Liver April 2017. Bisphosphonate infusions (Zometa) every 3 months. Clinical Trial LSZ102 (oral SERD) and Kisqali (Ribociclib) 5/18/17-11/16/17. Dx 6/23/2014, IDC, Left, 4cm, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 6/23/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/4/2016 Femara (letrozole) Targeted Therapy 1/4/2016 Ibrance (palbociclib) Dx 4/2017, IDC, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 5/17/2017 Targeted Therapy 5/17/2017 Kisqali
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Sep 17, 2017 10:02AM flwr57 wrote:

Hi AnimalCrackers - Thanks so much for your reply! This was just what I was looking for.

Here is a link for the study my oncologists are suggesting.

NCT02941926 

https://clinicaltrials.gov/ct2/show/NCT02941926?term=compleement&rank=1 

I am very grateful for the support system offered by the people on BCO. 

J.

Oncotype DX 18 (12%) Dx 1/3/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 1/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/18/2014 Lumpectomy: Right Radiation Therapy 5/7/2014 Breast Hormonal Therapy 7/1/2014 Arimidex (anastrozole) Dx 8/25/2017, IDC, Stage IV, metastasized to bone/liver/lungs
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Sep 17, 2017 11:04AM MissMonty wrote:

Hi flwr57,

I am in Ontario too, (I am being treated at Princess Margaret) and although I'm still pre-menopausal, I am doing a lot of research on hormone targeted therapies.  I look forward to hearing about your experience, if you do decide to participate in the trial.  The information I have uncovered so far looks very promising.

Anna


Hormonal Therapy 6/14/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 6/16/2017, IDC, Left, 4cm, Stage IV, metastasized to lungs, Grade 2, ER+/PR-, HER2- Chemotherapy Xeloda (capecitabine)
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Oct 11, 2017 04:48PM rethink_breast_cancer wrote:

My name of MJ DeCoteau and I am the executive director of Rethink Breast Cancer.

We are looking for woman who have been treated with ribociclib (Kisqali) to talk about their treatment experience.

You can find more information in the Stage IV and Metastatic Breast Cancer forum or you can send me a private message if you would be willing to participate.

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Oct 17, 2017 05:36PM flwr57 wrote:

I found out two weeks ago that I cannot participate in this study. After having additional scans, blood work and ECG, I found out that the research coordinator of the regional cancer program I attend missed an important detail about the anastrozole I was taking since July 2014. "If the prior neo (adjuvant) therapy included letrozole or anastrozole the disease free interval must be greater than 12 months from the completion of treatment until study entry." I stopped taking anastrozole August 2017 when I learned of the stage IV diagnosis.

Since then, my husband's insurance (I am retired) has denied funding Ibrance/fulvestrant. I have been waiting to hear if Afinitor/Aromasin will be approved. I just heard today that these meds will be approved. I am relieved but the waiting is terrible!

Oncotype DX 18 (12%) Dx 1/3/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 1/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/18/2014 Lumpectomy: Right Radiation Therapy 5/7/2014 Breast Hormonal Therapy 7/1/2014 Arimidex (anastrozole) Dx 8/25/2017, IDC, Stage IV, metastasized to bone/liver/lungs
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Oct 18, 2017 07:01PM flwr57 wrote:

Back from the oncologist today and a targeted therapy is not for me right now because the oncologist is concerned about progression in my liver. I start chemotherapy tomorrow, three cycles of Taxol - infusion week 1, week 2 and off week 3.

I wish all who are fortunate enough to participate on the ribo trials all the best!

Oncotype DX 18 (12%) Dx 1/3/2014, IDC, Right, 2cm, Stage IIA, Grade 1, 0/6 nodes, ER+/PR+, HER2- Surgery 1/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Surgery 2/18/2014 Lumpectomy: Right Radiation Therapy 5/7/2014 Breast Hormonal Therapy 7/1/2014 Arimidex (anastrozole) Dx 8/25/2017, IDC, Stage IV, metastasized to bone/liver/lungs
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Oct 21, 2017 11:34AM hummingbird-heather wrote:

I have been on ribociclib for just over a month with 1 stop due to ECG results. It does pack a punch as my nurse says but I feel very fortunate to be on th trial as my cancer is in many sites. The main effect is nausea but can be managed and I am living a pretty normal life. On holiday in Jasper right now!

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Oct 22, 2017 06:27AM Moderators wrote:

flwr57 we really are routing for you with the Taxol!!

hummingbird-heather, thank you for sharing your experience with ribociclib. And enjoy your holiday!!!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 4, 2017 03:29PM Lee1963 wrote:

I'm starting the Ribociclib/Letrozole clinical trial at Ottawa General next week. Can anyone tell me if they are currently in this study, and what your personal experience of the meds have been. This is my first treatment for stage IV, I was diagnosed September 2017, 4 years after my stage 1 breast cancer. Thanks :

Surgery 9/19/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 3/1/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Dec 4, 2017 12:15AM JuneBug56 wrote:

Hi Lee, I am also in that clinical trial at the Ottawa General. I started the drugs today. I was just diagnosed with stage 4 two weeks ago. It's my second recurrance in 18 years. I'd really like to hear from you how you're feeling on the trial. So far, on my first day I'm already having some burning in my stomach. I hope it doesn't go downhill from here!

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Dec 10, 2017 07:47PM Lolis wrote:

Hi

I am meeting wit my MO on Tuesday to discuss my eligibility for this trial. I haven' received confirmation of stage iv diagnosis yet although at my last follow up MRI there was a question of recurrence in my chest wall with sternum and pleural involvement.

Will post here once I know more.

Lola

Dx at 33 Dx 3/22/2014, DCIS, Left, 5cm, Stage 0, Grade 2, 8/24 nodes, ER+/PR+, HER2- Dx 3/22/2014, IDC, Left, 5cm, Stage IIIA, Grade 2, 8/24 nodes, ER+/PR+, HER2- Surgery 4/21/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 5/14/2014 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 9/10/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/28/2014 Breast, Lymph nodes
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Dec 11, 2017 09:21PM JuneBug56 wrote:

Hi again, I thought I'd post again since I've been on this combo for 7 days now, so I feel like I can provide some feedback for others. The main side effect for me is extreme fatigue. The first 3 days I experienced slight nausea and occasional burning stomach. I was able to just take otc gaviscon and it helped, also took some ginger gravol. I am having constipation too. As of today, I'm not nauseated at all. So overall I'd say the symptoms are manageable as long as you can rest if you get the type of fatigue I'm experiencing.

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10 hours ago Lolis wrote:

Hi Junebug,

Thanks for your input. I signed the papers for the trial and just did the bone scan on Thursday with he CT for the trial to be completed on Wednesday. I see the MO again on Thursday to potentially start the trial.

Will post again once I know more or start the trial.

I still don't know the extend of the recurrence.

Thanks.

Lola

Dx at 33 Dx 3/22/2014, DCIS, Left, 5cm, Stage 0, Grade 2, 8/24 nodes, ER+/PR+, HER2- Dx 3/22/2014, IDC, Left, 5cm, Stage IIIA, Grade 2, 8/24 nodes, ER+/PR+, HER2- Surgery 4/21/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 5/14/2014 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 9/10/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/28/2014 Breast, Lymph nodes

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