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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Ribociclib/Kisqali with Letrozole - Any one on this combo?

Topic: Ribociclib/Kisqali with Letrozole - Any one on this combo?

Forum: Stage IV and 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: May 19, 2017 01:58PM

S3K5 wrote:

I am starting this new forum for all those who are on this newly approved drug combo. I started on Kisqali/Letrozole combo 6 weeks ago and so far it has been tolerable. Letrozole gives me joint pain and low back pain. My oncologist has asked me to take this on alternate days. Would love to hear from others about their experience with this therapy.

Chemotherapy 5/30/2008 AC + T (Taxol) Dx 4/19/2013, IDC, Stage IV, mets, ER+/PR+, HER2- Hormonal Therapy 5/6/2013 Faslodex (fulvestrant)
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May 19, 2017 02:42PM - edited May 19, 2017 02:47PM by AnimalCrackers

Hi S3K5 - I just started Kisqali (aka ribociclib) but not with letrozole.  Ibrance (aka palbociclib) and letrozole failed me.  I'm in a clinical trial with a new SERD that has no name yet.  It's called LSZ102 and I take it with Kisqali.  I started a topic for the clinical trial I'm on.  I'll be following this thread closely.  Thanks for starting it up.  I'm sure a lot of others on the boards will be watching...

Good luck!

Cathy, diagnosed Stage IV de novo June 2014 (age 52). Bone mets at initial diagnosis (2014). Progression to Liver April 2017. Bisphosphonate infusions (Zometa) every 3 months. Clinical Trial 5/18/17 LSZ102 (oral SERD) and Kisqali (Ribociclib). Dx 6/23/2014, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, mets, ER+/PR+, HER2- Hormonal Therapy 6/23/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/5/2016 Femara (letrozole) Targeted Therapy 1/5/2016 Ibrance (palbociclib) Hormonal Therapy 5/18/2017 Targeted Therapy 5/18/2017
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May 19, 2017 03:34PM carpe_diem wrote:

I just finished my first round on Kisqali and letrozole, although it's kind of off-label since I'm way past first line. I started on anastrozole for de novo stage IV with lung mets and had 45 months with practically no side effects before I had progression to my shoulder blade. On to Faslodex - no side effects, but progression to liver. Then Xeloda - terrible Hand Foot Syndrome, but put up with it for a year since I was stable, and kept reducing dosage until liver mets started growing. Brief trial on 5-FU (the end result of xeloda) - real nuisance with continuous infusion pump, and my feet weren't much better. On to paclitaxel - couldn't handle allergic reaction - and moved to abraxane, same drug with a different carrier. That worked for about a year without a lot of problems that were clearly related to the drug, besides hair loss, but meanwhile I developed Afib and leg edema, adding a cardiologist to my crew.

When my liver mets grew and there was a new spot on my T4 vertebra my one suggested Ibrance plus letrozole. However, I'd been following ribociclib since it's a Novartis drug and available to me for free (ifapproved) since my husband is a Novartis retiree. So she did a little research, ran an EKG to make sure long-QT was not an issue, and sent in the prescription off-label. It came through without any problems and I started it with letrozole on April 25. I don't seem to have any of the listed side effects, except that my WBC was down, but still acceptable at 2.8. I don't seem to be getting my hair back, but I can live with that. I even think my Afib is a bit better!

Does anyone know how to pronounce Kisqali?

Lung mets from the start. Solitary met, right shoulder blade 12/1/14. Dx 3/11/2011, IDC: Mucinous, Left, 5cm, Stage IV, Grade 2, 2/4 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/12/2011 Arimidex (anastrozole) Surgery 11/27/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 1/28/2013 Breast, Lymph nodes Surgery 5/13/2013 Reconstruction (left) Hormonal Therapy 12/19/2014 Faslodex (fulvestrant) Chemotherapy 4/17/2015 Xeloda (capecitabine) Chemotherapy 5/13/2016 Abraxane (albumin-bound or nab-paclitaxel)
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May 20, 2017 02:31PM S3K5 wrote:

Hi Carpe_diem, you have gone through so much! Hopefully, you'll start seeing regression of your liver mets. The clinical trial data shows a longer PFS than Ibrance.

I have tried Xeloda, Affinitor + Aromasin, Ibrance + Faslodex; Ibrance was tolerable when compared to the other two but my blood count was messed up. Scans showed some regression in bone mets. So my onc switched me to Kisqali. So far so good!

Keep us posted!

Chemotherapy 5/30/2008 AC + T (Taxol) Dx 4/19/2013, IDC, Stage IV, mets, ER+/PR+, HER2- Hormonal Therapy 5/6/2013 Faslodex (fulvestrant)
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May 21, 2017 04:33PM carpe_diem wrote:

Think of it this way: I'm still around and enjoying life years after my expiration date. Last week I had two cancer research grad students over for dinner - they help run a town-gown program for cancer researchers and survivors - and this week I'm hosting a choir party for 30-40. Cancer sucks but life is good!

There's even a little fuzz on my head.


Lung mets from the start. Solitary met, right shoulder blade 12/1/14. Dx 3/11/2011, IDC: Mucinous, Left, 5cm, Stage IV, Grade 2, 2/4 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/12/2011 Arimidex (anastrozole) Surgery 11/27/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 1/28/2013 Breast, Lymph nodes Surgery 5/13/2013 Reconstruction (left) Hormonal Therapy 12/19/2014 Faslodex (fulvestrant) Chemotherapy 4/17/2015 Xeloda (capecitabine) Chemotherapy 5/13/2016 Abraxane (albumin-bound or nab-paclitaxel)
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Jun 10, 2017 10:07PM S3K5 wrote:

Hi Carpe_Diem, How are you doing so far on Kisqali + Letrozole? I am having low back pain and pain in all the joints due to letrozole, The dr is going to put me on Ibrance again! My blood counts dropped a lot with Kisqali.

Chemotherapy 5/30/2008 AC + T (Taxol) Dx 4/19/2013, IDC, Stage IV, mets, ER+/PR+, HER2- Hormonal Therapy 5/6/2013 Faslodex (fulvestrant)
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Jun 17, 2017 03:31PM carpe_diem wrote:

S3K5,

So far I seem to be doing well in terms of side effects, but who knows how it's working? I won't have scans for another month, and even then I've heard it may not kick in for six months. I never had problems with bone pain while I was on anastrozole for 45 months and letrozole hasn't been a problem either. I did get worried about blood counts after my first month on kisqali when my neutrophils measured 1.0, just the bare minimum for continuing, so I was expecting a drop after another two weeks on the drug and wondered if I'd have to take a break. Surprise! My neutrophils went up to 1.6 and it was clear sailing to finish the last week. I'm on my week off - just got back from NYC where I walked on the Highline, attended a play and a concert, visited a museum, and ate out four times, including at the Russian Tea Room. I'd have done more, but my feet weren't up to it.

I go in on Monday for bloodwork and another EKG. I hope my good luck continues, and I hope Ibrance works better for you. I hear the results are pretty much the same.

Lung mets from the start. Solitary met, right shoulder blade 12/1/14. Dx 3/11/2011, IDC: Mucinous, Left, 5cm, Stage IV, Grade 2, 2/4 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/12/2011 Arimidex (anastrozole) Surgery 11/27/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 1/28/2013 Breast, Lymph nodes Surgery 5/13/2013 Reconstruction (left) Hormonal Therapy 12/19/2014 Faslodex (fulvestrant) Chemotherapy 4/17/2015 Xeloda (capecitabine) Chemotherapy 5/13/2016 Abraxane (albumin-bound or nab-paclitaxel)

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