Kisqali (ribociclib)

flwr57

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!

flwr57

Hi Moderators,

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

AnimalCrackers

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

flwr57

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.

MissMonty

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

rethink_breast_cancer

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.

flwr57

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!

flwr57

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!

hummingbird-heather

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!

Moderators

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

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

Lee1963

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 :

JuneBug56

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!

Lolis197138

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

JuneBug56

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.

Lolis197138

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