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Topic: Ribociclib, exemestane, everolimus clinicial trial

Forum: Stage IV and Metastatic Breast Cancer ONLY —

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Posted on: Feb 14, 2017 09:23PM

Davenport1 wrote:

Bones met for 2 years, just went off ibrance + Letrozole (which worked great for 2 years by the way) due to progression, wondering if anyone has been on clinical trial for this new combination of Ribociclib, exemestane and everolimus? Would love to hear anything about this combo of drugs.

Thanks,

Davenport

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May 10, 2017 03:24PM carpe_diem wrote:

Mama2twins,

I was able to get ribociclib (Kisqali) even though it's my seventh line of treatment. Generally once a drug is FDA approved it can be used outside of the initial recommendation. Actually, I've only progressed on three treatments; the other three had side effects that were hard to deal with. I had terrible Hand Foot Syndrome with Xeloda, so I hope you have better luck with that. I stuck it out for a year until we had to reduce the dose so much I had a slight progression.

I just started Kisqali April 26 so I can't tell yet if it's working, but I'm not having any trouble with side effects. It's over a month since I stopped Abraxane and maybe I have a little fuzz on my head if you look at it in the right light, but Kisqali can cause hair loss and thinning, too. I'll let you know how things go for me.

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 10, 2017 06:30PM dlb823 wrote:

Alissa, I'm so sorry the study didn't work out for you. But since I was looking at what sounds like the same study due to new liver mets, I really appreciate knowing your experience. Thank you for even doing the trial for all of us!

I'm on round #3 of Xeloda now (the choice I opted for over the trial, mostly b'cuz the trial entailed too much travel for me), and have already had huge drops in AST, ALT & TMs in just 6 weeks. I hope and pray you will too! Deanna

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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May 10, 2017 06:34PM pajim wrote:

Alissa, so sorry about the liver function tests, but it simply appears that ribo and A/A are not for you. I guess it sometimes happens that way. Hope Xeloda treats you better.

Davenport, maybe being off the meds for a while will keep the mouth sores from coming back? One can always hope.

Madrid was sunny and warm-in-the-sun-cold-in-the-shade. I enjoyed myself a lot. The conference was better than last year, I refrained from drinking too much wine and I got enough sleep. Saw friends I only get to see now and then and didn't need any of the pharmacy I took with me (except the one antacid) A win all the way around. So glad to get out of the house and office.

So far cycle 3 is treating me well. A few weirdnesses but nothing to complain about. After all, I just spent a week in Spain on someone else's dime.

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/26/2013 Femara (letrozole) Hormonal Therapy 4/21/2013 Faslodex (fulvestrant) Targeted Therapy 2/24/2016 Ibrance (palbociclib) Chemotherapy 6/18/2017 Xeloda (capecitabine) Targeted Therapy 8/14/2018 Verzenio Hormonal Therapy 8/14/2018 Faslodex (fulvestrant)
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May 10, 2017 11:19PM zarovka wrote:

Hugs Alissa. Treatment changes mess with your head, but a bit of Xeloda could be just thing. Works well for many. I do think you can push for ribociclib now, but there are some arguments for doing Xeloda and then going back to CDK 4/6 inhibitors. If you haven't take Ibrance, that's approved for second line and really the same thing as ribociclib. Not sure if your treatment history is complete ...

Hang in there. Thank you so much for letting us know how things went for you.

>Z<

Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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May 11, 2017 12:39PM Mama2twinsplus2 wrote:

Thanks for all of the love ladies!! Xeloda has not been to bad to me, yet!!

Z- every time I try to update my history, it erases things! I did Ibrance for 16 months after my de novo dx. That is why my insurance said no way to Ribo, they already paid big $ for them any months of Ibrance.

Pajim, so glad you enjoyed your trip!!

Deanna, I am hoping for good results like that, gives me hope, thank you!!

I hope everyone is having a great day today!!

Alissa

Dx 7/8/2015, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Surgery 8/15/2015 Prophylactic ovary removal Targeted Therapy 2/9/2017 Afinitor (everolimus)
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May 11, 2017 01:53PM Davenport1 wrote:

Alissa, So Sorry to hear you are off the study!!! Makes me feel lonely! But obviously best if it was messing with you that way! I will check with the study about the probiotics...maybe I will just have to eat lots of good yogurt! Don't remember if that was no no or not? Hope the Xoleda goes better for you and Deanna that is good to hear about your results as that is probably where I will go next whenever that is...

I have just hit the incredible tired from the radiation, I think, and am now starting to peel all over as if I had a sunburn...especially my face...along with some reaction in my left lymphodemic arm. I am now four days back on.

Z- I have often wondered why they don't generally let you go back on a first or second line treatment if you have been off on another drug? Unless there is a chance of organ damage, maybe. I know if I take advil for a while it becomes less potent and doesn't work as well but if it switch it up use something else for pain for a while I can go back to advil and it works well again. Seems like some of this is a matter of protocol....

Pajim - hoping the biotene mouthwash and toothpaste help with the mouthsores....

thanks ladies, for your support!


Tamera


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May 11, 2017 06:47PM zarovka wrote:

Davenport -

I don't know if I would re-do most treatments. They fail because the cancer has mutated into a resistant form. It's not an unreasonable position for insurance companies to take. However, with CDK 4/6 inhibitors you really don't know if the hormone suppression failed or the CDK 4/6 inhibitor failed.

Clinical trials showed that Ibrance had no effect as a single therapy. It only works with effective hormone suppression. So if, say, letrozol stops working it stands to reason that the CDK 4/6 inhibitor will stop working too. If you switch to a different hormone suppression strategy, like a SERD, I think the CDK 4/6 inhibitor could become effective again. I've read smart researchers speculate along these lines, but the trials have to be done before insurance will pay.

For this reason, I encourage people to get into trials of CDK 4/6 inhibitors that accept patients that have already taken a CDK 4/6 inhibitors. It seems like it could be a reasonable strategy... and its the only way you will get a second shot at a CDK 4/6 inhibitor right now without paying out of pocket (not going to happen).

That said, there is a whole argument for coming back to hormone suppression after chemo. One strategy could be to go on to chemo and than back to hormone therapy plus a second round of CDK 4/6 inhibitor at that time. Maybe it will be approved by that time ... it's on my list of strategies based on my research. Few doctors recommend going back to hormone suppression after you have been on chemo for a while despite the research. One of the many things about how we treatment cancer that baffles me, although not actually the most disturbing thing... I expect to be taking my own path through the cancer maze as the herd is not always doing the most sensible thing.

>Z<

Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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May 15, 2017 09:28AM Mama2twinsplus2 wrote:

Hey ladies, just wanted to check in and see how everyone was doing. I am finishing up my last day of my 2nd Xeloda cycle. I should see my onc this week and I am making a list of things to talk to her about, mainly ideas for the future. I am eager to see blood work and see if it continues to improve. I know we are going to set up scans soon also. I hope everyone had a beautiful weekend and is feeling great!!

Alissa

Dx 7/8/2015, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Surgery 8/15/2015 Prophylactic ovary removal Targeted Therapy 2/9/2017 Afinitor (everolimus)
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May 15, 2017 08:30PM pajim wrote:

Three weeks into cycle three I had a semi-nasty week. Just felt really "off" and developed my first mouth sore. Maybe jet lag, maybe something else. Sigh. Here's hoping this coming week will be better. The excellent news is whenever I feel 'off' Advil solves the problem. That's sort of odd but the way it is.

My tumor markers keep rising. Next [CT] scan in five weeks.

On the plus side after 3 weeks of rain the sun is due to come out tomorrow. We're a gonna get summah! (That's what they say in Boston) That should make me feel better no question.

Glad Xeloda is treating you OK and I hope the blood work is spectacular.

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/26/2013 Femara (letrozole) Hormonal Therapy 4/21/2013 Faslodex (fulvestrant) Targeted Therapy 2/24/2016 Ibrance (palbociclib) Chemotherapy 6/18/2017 Xeloda (capecitabine) Targeted Therapy 8/14/2018 Verzenio Hormonal Therapy 8/14/2018 Faslodex (fulvestrant)
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May 18, 2017 01:56AM artistatheart wrote:

Hey pajama, whatever works for you! I am craving a long stretch of sun myself!

Best of luck to both you and Alissa on those scans!

Dx 7/22/2015, ILC, Left, 4cm, Stage IV, Grade 3, ER+/PR+, HER2- Hormonal Therapy 8/10/2015 Femara (letrozole) Targeted Therapy 8/25/2015 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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May 18, 2017 03:59AM ShetlandPony wrote:

Davenport, it seems strange to me that you would be allergic to dexamethasone because steroids are used to quell allergic reactions, are they not? But look at the other ingredients in your dexa solution. Dyes, flavorings, preservatives, etc. Perhaps you could ask your onc about trying a different brand. I compared two brands and they had a very different set of inactive ingredients.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018 Xeloda NEAD
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May 19, 2017 01:27PM hawksfansarah wrote:

Any chance we can get a separate Ribociclib/Kisqali topic??

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May 22, 2017 09:44AM pajim wrote:

Hi Hawkfan, go ahead and start one!

Is anyone besides me still taking A/A and a 'ciclib'? Tamera?

At the end of cycle three [for me] I don't know if there will be a cycle 4. Four days in to a set of antibiotics for recurrent fevers, the fevers have not receded. Sigh. On the plus side, all my mouth sores have healed up!

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/26/2013 Femara (letrozole) Hormonal Therapy 4/21/2013 Faslodex (fulvestrant) Targeted Therapy 2/24/2016 Ibrance (palbociclib) Chemotherapy 6/18/2017 Xeloda (capecitabine) Targeted Therapy 8/14/2018 Verzenio Hormonal Therapy 8/14/2018 Faslodex (fulvestrant)
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May 23, 2017 08:33AM Mama2twinsplus2 wrote:

Pajim,

I had a bout of awful fevers my last week on the trial. It ended up not being neutropenic fever, more likely a bug I picked up in Disneyland, but it was awful! The only thing that helped was Ibuprofen 800mg. Hugs to you, keep us updated!

ALissa

Dx 7/8/2015, IDC, Left, 6cm+, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Surgery 8/15/2015 Prophylactic ovary removal Targeted Therapy 2/9/2017 Afinitor (everolimus)
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May 23, 2017 10:09AM pajim wrote:

My MO is not a happy camper. Current diagnosis: everolimus-related pneumonitis (inflammation of the lung). I started the steroids this morning. Scans have been moved up to next week. Meantime exemestane only.

He's looking for an excuse to pull me out of the trial and hoping that because my tumor markers are still rising the scans will show progression and it'll be automatic. I told him last night that I could simply withdraw consent LOL.

Basically I think Afinitor screwed me up.

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/26/2013 Femara (letrozole) Hormonal Therapy 4/21/2013 Faslodex (fulvestrant) Targeted Therapy 2/24/2016 Ibrance (palbociclib) Chemotherapy 6/18/2017 Xeloda (capecitabine) Targeted Therapy 8/14/2018 Verzenio Hormonal Therapy 8/14/2018 Faslodex (fulvestrant)
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May 23, 2017 12:14PM Davenport1 wrote:

Hi All,

Pajim - So sorry to hear about your Pneumonities...that darn Afinitor...makes you wonder if it's not downright dangerous. 2 Weeks ago I had a very high fever and some back cramping that was as bad as I have ever had....in the end we concluded it might have been the flu but no one was certain. They tested for UTI (which I knew it wasn't...I had had that before and this was totally different) and kidney's tested okay. It did subside within about 4 days.

As of today, though, I am officially "off the study"....my scans of last Thursday showed progression so my team decided this protocol was not working for me. They are supposed to be calling me later today to let me know where I am headed next. I had some genomic testing done recently and they said they wanted to take a look at those tests this morning before making a decision. Have any of you been put on a protocol based on that testing? If so I'd be interested in hearing about it.

I do have to report that the Biotene DID keep the mouth sores away this last round and that I did NOT breakout in a rash which makes my wonder if it was something in the study mouthwash, (other than the steroid) that caused the rash as well. Who knows? All these mysteries right?


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May 23, 2017 12:35PM AnimalCrackers wrote:

So sorry this combination does not seem to be working.  We are all so hopeful for these trials.  I'm in a clinical trial for an unnamed SERD LSZ102 and Ribociclib.  I'm only 5 days into it.  How long before you guys started to notice side effects on your protocol?

Cathy, Diagnosed de novo bone mets June 2014 at age 52. Progression to Liver 2017. Progression to bone mets Sept. 2018. Bisphoshonate (Zometa) infusions every 3 months. Participated in 2 clinical trials, including an AKT1 inhibitor. 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 1/5/2016 Femara (letrozole) Targeted Therapy 1/5/2016 Ibrance (palbociclib) Dx 4/2017, IDC, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 5/18/2017 Targeted Therapy 5/18/2017 Kisqali Targeted Therapy 12/19/2017 Hormonal Therapy 12/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/20/2018, IDC, Stage IV, metastasized to bone Radiation Therapy 8/20/2018 External: Bone Surgery Chemotherapy Taxol (paclitaxel)
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May 23, 2017 01:57PM Davenport1 wrote:

AnimalCrackers,

what is your base drug on this trial? I'm not sure it was the Ribo that was causing the issues on the Triniti 1 trial but possibly the Envirolimus(Afinitor) instead. Hopefully you won't have these issues that Alissa, Pajim and I had. We all had Afinitor in common on our trials.


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May 23, 2017 02:24PM AnimalCrackers wrote:

Hi Davenport1,

The study drug doesn't have a name yet.  It is a SERD (Selective Estrogen Receptor Down-regulator) referenced by LSZ102.  It blocks and destroys estrogen receptors (similar to faslodex but an oral delivery). 

Having already been on Palbociclib/Ibrance I'm familiar with the side effects of CDK4/6 inhibitors.  Ribo is slightly different from palbo but close enough. 

I was just wondering how quickly you noticed side effects.  I get that we are talking apples and oranges.  Just anxious as each day passes.  I know it took at least a couple of weeks on ibrance\letrozole before I noticed anything when I was on that protocol.

Cathy, Diagnosed de novo bone mets June 2014 at age 52. Progression to Liver 2017. Progression to bone mets Sept. 2018. Bisphoshonate (Zometa) infusions every 3 months. Participated in 2 clinical trials, including an AKT1 inhibitor. 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 1/5/2016 Femara (letrozole) Targeted Therapy 1/5/2016 Ibrance (palbociclib) Dx 4/2017, IDC, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 5/18/2017 Targeted Therapy 5/18/2017 Kisqali Targeted Therapy 12/19/2017 Hormonal Therapy 12/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/20/2018, IDC, Stage IV, metastasized to bone Radiation Therapy 8/20/2018 External: Bone Surgery Chemotherapy Taxol (paclitaxel)
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May 23, 2017 02:31PM pajim wrote:

Aah. Cathy, you want to hop on to the Faslodex/Ibrance thread. You're taking an analog of each of them. That was my previous protocol and I had next to no side-effects.

Well, there was the funny-smelling urine, and the hair thinning, and the usual 'menopausal' symptoms, but nothing major. And you'll be spared the injection pain from Faslodex.

After two weeks they'll test your blood to make sure your neutrophils havn't tanked too much. Some women get really tired with low neutrophils but it never happened to me,

All my recent problems have been due to Afinitor. No idea where we go next. Most likely Xeloda but we'll discuss next Wednesday. On the phone last night my MO said he wasn't sure. He did say he hates Afinitor.

Dx 4/20/2008, IDC, Right, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, IDC, Stage IV, metastasized to bone, mets, ER+/PR+, HER2- Hormonal Therapy 2/26/2013 Femara (letrozole) Hormonal Therapy 4/21/2013 Faslodex (fulvestrant) Targeted Therapy 2/24/2016 Ibrance (palbociclib) Chemotherapy 6/18/2017 Xeloda (capecitabine) Targeted Therapy 8/14/2018 Verzenio Hormonal Therapy 8/14/2018 Faslodex (fulvestrant)
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May 23, 2017 02:38PM AnimalCrackers wrote:

Thanks Pajim, I'll check out the faslodex/ibrance thread.

Cathy, Diagnosed de novo bone mets June 2014 at age 52. Progression to Liver 2017. Progression to bone mets Sept. 2018. Bisphoshonate (Zometa) infusions every 3 months. Participated in 2 clinical trials, including an AKT1 inhibitor. 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 1/5/2016 Femara (letrozole) Targeted Therapy 1/5/2016 Ibrance (palbociclib) Dx 4/2017, IDC, metastasized to liver, ER+/PR+, HER2- Hormonal Therapy 5/18/2017 Targeted Therapy 5/18/2017 Kisqali Targeted Therapy 12/19/2017 Hormonal Therapy 12/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/20/2018, IDC, Stage IV, metastasized to bone Radiation Therapy 8/20/2018 External: Bone Surgery Chemotherapy Taxol (paclitaxel)
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May 23, 2017 05:59PM Davenport1 wrote:

Animal Crackers. I was a week into on the 1st cycle when the mouthsores started to appear. Just at the end of the second cycle (month 2) I had the high fever.....

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May 23, 2017 11:34PM - edited May 23, 2017 11:34PM by zarovka

Pajim - thanks for the update. It seems there are people who tolerate Afinitor and those that don't. If you are not tolerating it, I believe it is best to move on. Xeloda often works well for a long long time.

>Z<

Ibrance/Letrozol Feb '16 -Sep '17. Adoptive Cell Therapy Oct 2017. Jan 2018 SBRT to sternum met and liver mets. Jan 2018 start Faslodex. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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Jun 3, 2017 08:11PM ShetlandPony wrote:

Yes, my onc said that with Afinitor patients seem to either have the side effects or they don't, rather than it being a matter of degree. I didn't have them, but it wasn't working. Wah!

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018 Xeloda NEAD

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