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Topic: To trial or not to trial (MonarchE / Verzenio)

Forum: Clinical Trials, Research News, Podcasts, and Study Results —

Share your research articles, interpretations and experiences here. Let us know how these studies affect you and your decisions.

Posted on: Jan 3, 2019 03:59PM

beeline wrote:

Hi all,

I wasn’t sure where best to put this but am looking for some insight from other BCO members and would love to find members who are on the trial. I have been offered the MonarchE clinical trial (Verzenio plus endocrine therapy) and I am really torn. You can see from my stats below that I am stage 3C so high risk for recurrence. I am relatively young at 42 with 2 kids in primary school. I’m also the primary breadwinner so work full time. I want to give myself the best chance possible but I don’t know if this is it.

I would have to transfer my care to a different hospital system and travel about 2 hours for treatment. It will be a pain, but not a reason not to do it. I am worried about side effects, having been hit with everything so far on chemo. On the one hand I would like to start getting my life back and stop being a patient, on the other hand, I think Ican handle another 2 years of it if there’s a good chance it means BC never returns.

Any thoughts or advice? Anyone making a similar decision or can share their decision-making/experiences on Pallas or similar? All input appreciated!

https://clinicaltrials.gov/ct2/show/NCT03155997


American in NZ. Dx’d at 42. Had to stop Taxol after #6 due to neuropathy. Randomised to control group in MonarcheE trial 😩 Dx 7/17/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 8/2/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/21/2018, DCIS/IDC/Paget's, Right, 2cm, Stage IIIC, Grade 2, 10/22 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 9/17/2018 AC + T (Taxol) Hormonal Therapy 2/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/24/2019 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 1/21/2020 Arimidex (anastrozole), Femara (letrozole)
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Jan 3, 2019 06:22PM - edited Jan 3, 2019 06:26PM by Meow13

beeline, I did a search on BCO and I see there are people on stage 4 forum on verzenio plus hormone therapy

Here is one not stage 4, maybe you can pm someone from this discussion

https://community.breastcancer.org/forum/67/topics...


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Jan 3, 2019 06:28PM Meow13 wrote:

Sorry beeline, I see you already been in touch. Looking for MonarchE study.

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Jan 3, 2019 08:50PM beeline wrote:

Thanks Meow. I have indeed been scouring the boards for any mention of it and have read the stage IV thread from start to finish! I am also interested in others’ takes — what would you do if you were in my position?


American in NZ. Dx’d at 42. Had to stop Taxol after #6 due to neuropathy. Randomised to control group in MonarcheE trial 😩 Dx 7/17/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 8/2/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/21/2018, DCIS/IDC/Paget's, Right, 2cm, Stage IIIC, Grade 2, 10/22 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 9/17/2018 AC + T (Taxol) Hormonal Therapy 2/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/24/2019 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 1/21/2020 Arimidex (anastrozole), Femara (letrozole)
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Jan 4, 2019 10:48AM Ek7479 wrote:

Hi, I’m currently enrolled in MonarchE, although I was randomized to be in the control group so I am on hormonal therapy alone, not including the 2 years of Verzenio. It was an easy decision for me as I’ve heard so many positive things about CDK4/6 inhibitors and how they may be the future of BC treatment for many of us.

In terms of logistics, the visits at the beginning are very two weeks so if you’re shifting provider and it’s out of the way then it could add the burden of lots of travel for you. Now that I’m 12 weeks in my doctor got a waiver from Eli Lilly to make my visits every 3 months instead of every month. So not too bad.

Since I’m not on the Verzenio I can’t speak to the side effects although my doctor said diarrhea is almost assured, at least in the beginning.

Good luck in your decision! I too have small kids and am the primary breadwinner—I’m throwing as much at this as I can.
Dx 12/27/2017, DCIS/IDC, Right, 2cm, Stage IIB, Grade 2, 2/26 nodes, ER+/PR+, HER2- (FISH) Surgery 2/4/2018 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 3/26/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/13/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/15/2018 Whole-breast: Breast, Lymph nodes
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Jan 4, 2019 12:00PM Lexica wrote:

Hi, beeline - I felt the same way - I want to do as much as I can to keep this away for as long as I can - I have two littles as well and want to see them grow! I enrolled in the PALLAS trial (Ibrance/Palbociclib + hormone therapy) and was placed in the drug arm. At the beginning, I was so grateful to be getting an extra chance at beating this, but I have to say, after 9 months of participation in the trail, that 50% of me is glad I am doing it and I think it will be beneficial and 50% of me is still doubtful it will have any benefit. Who knows, right? Bright side is that side effects are fairly minimal for me - I did have one bout of low WBC and had to take a week off, but that's about it. I also have fatigue, minor neuropathy and hair loss - but I can't tell you if any of those are from the Ibrance or from all of the other stuff going on with treatment.

I second EK7479 - visits are much more frequent up front for me - every two weeks. After the first quarter, it's every 3 months.

Good luck, and I hope whatever decision you make is the right one for you and you are comfortable with it. Sometimes the choices are so hard! Remember, too, if you are placed in the drug arm and the side effects become too much for you, you can always drop out of the trial. Keep us updated!

Diagnosed at 34. 2 years of Ibrance via PALLAS trial (ends 4/2020) Dx 7/2017, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- (IHC) Surgery 12/14/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right Dx 12/27/2017, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 3, 5/11 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/15/2018 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol) Hormonal Therapy Aromasin (exemestane)
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Jan 4, 2019 03:46PM beeline wrote:

Thank you both for the responses!

Ek7479 - I think I am split and almost hope I end up in the control arm! Am I right in thinking there is more monitoring and tests than you would otherwise get? Do you find it reassuring or just more opportunities for scanxiety? Have they said what would happen if you had a recurrence (would you have access to Verzenio?)

Lexica - so glad the side effects are minimal for you! I worry about the fatigue and also nausea is on the list for Verzenio. Basically everything about chemo has been worse than I anticipated going in so I’m trying to be very realistic about this. Will you stick out the whole trial do you think? I have read a lot of the research on the earlier trials and CDK4/6 inhibitors in general and have read that for Verzenio there can be a rebound effect in tumour growth if you stop too soon — not that they know what too soon is!

I know it’s not possible because the whole point of the trial is to find out, but I do wish sometime could tell me if it will work! Or at least lay out really clearly the expectations for why it might. Sigh. I agree in any case that the key is making a decision I can feel comfortable with and then not looking back.


American in NZ. Dx’d at 42. Had to stop Taxol after #6 due to neuropathy. Randomised to control group in MonarcheE trial 😩 Dx 7/17/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 8/2/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/21/2018, DCIS/IDC/Paget's, Right, 2cm, Stage IIIC, Grade 2, 10/22 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 9/17/2018 AC + T (Taxol) Hormonal Therapy 2/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/24/2019 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 1/21/2020 Arimidex (anastrozole), Femara (letrozole)
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Jan 5, 2019 06:22PM vlnrph wrote:

I imagine your endocrine therapy might be tamoxifen since you are likely pre-menopausal. I found that quite tolerable, the aromatase inhibitors not. Your treatment included the Red Devil: I'm not surprised that you were knocked out by it. I refer to my TCx4 as chemo lite...

I'm still trying to figure out how to handle the Verzenio diarrhea. 150mg twice a day was too much but 100mg is better. The original trials allowed for dose reductions so presumably that opportunity would be available.

I am grateful for all the brave individuals who agreed to participate in research and help bring these new options to a wider market. Still, you need to do what's best for you and your family. As Lexica reminds us above, if it gets to be unmanageable, you can stop.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jan 6, 2019 07:57AM Ek7479 wrote:

beeline— the visits I’ve had are just bloodwork, QOL/SE questionnaires, physical exams. No scans so far, so no anxiety. For me it just means seeing more of my MO who I like and trust anyway.

That’s an interesting point about getting (free?)access to the drug if a recurrence happens while enrolled in the trial. I’ve never asked, but now I will!


Dx 12/27/2017, DCIS/IDC, Right, 2cm, Stage IIB, Grade 2, 2/26 nodes, ER+/PR+, HER2- (FISH) Surgery 2/4/2018 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 3/26/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 7/13/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/15/2018 Whole-breast: Breast, Lymph nodes
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Jan 6, 2019 03:29PM beeline wrote:

Ek7479 - thank you. That’s both reassuring and... not! Let me know what you find out!

vlnrph - thanks for reaching out. It’s good to hear that you found the tamoxifen tolerable. I’ve read the recent studies that say OS plus AI is more effective in premenopausal women, but sort of thought if I do the trial maybe I can stick with Tamoxifen as I’m tackling things another way. I guess it’s just impossible to know what might work or not. I’m so sorry you recurred and hope Verzenio does the trick for you for a long time! I, too, am hoping a dose reduction would be possible if needed. I may ask the trial coordinator. And just as a side note — I grew up in Racine, so not far from you! I love how small world can be 😊


American in NZ. Dx’d at 42. Had to stop Taxol after #6 due to neuropathy. Randomised to control group in MonarcheE trial 😩 Dx 7/17/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 8/2/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/21/2018, DCIS/IDC/Paget's, Right, 2cm, Stage IIIC, Grade 2, 10/22 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 9/17/2018 AC + T (Taxol) Hormonal Therapy 2/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/24/2019 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 1/21/2020 Arimidex (anastrozole), Femara (letrozole)
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Jan 6, 2019 04:59PM vlnrph wrote:

Beeline, I went to Case High School! My folks still live in the same house, not far from the Regency Mall. Ovarian suppression can be a challenge. Since you are so young, has anyone suggested genetic counseling?

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jan 7, 2019 11:50AM beeline wrote:

vlnrph - how funny! I went to Park but my best friend went to Case! My parents are also still in the same house near Westwood Park.

I have found chemopause a struggle so believe that OS is not a walk in the park. It’s just hard to know if I am doing ”enough.” In terms of genetic testing, I don’t fit the family pattern for BRAC1/2 but am talking to a genetic counsellor about testing for some other genes more generally implicated in cancer as there are a lot of young (under 60) deaths on my dad’s side from different cancers.

American in NZ. Dx’d at 42. Had to stop Taxol after #6 due to neuropathy. Randomised to control group in MonarcheE trial 😩 Dx 7/17/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 8/2/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/21/2018, DCIS/IDC/Paget's, Right, 2cm, Stage IIIC, Grade 2, 10/22 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 9/17/2018 AC + T (Taxol) Hormonal Therapy 2/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/24/2019 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 1/21/2020 Arimidex (anastrozole), Femara (letrozole)
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Jan 18, 2019 05:27AM Minniesi wrote:

Hi, there from Finland! I'm in this trial, in control group and my nurse said that there is no access to drug if you relapse during trial. In many trials there is that advantage, but i guess not in this one than. That would have been a great plus since the drug is not even in the market in Finland.

They do scans only if you have any syptoms. And I think that's a good thing, since I tend to get the worst scananxiety. Bloodwork (evey 3 months at the moment for me) and appointments with onc or phonecalls from nurse, that's all at the moment. I did get into ultra sound really quickly after I found a swollen lymphnode from my chest (cancerous side). Turns out it wasn't a lymph node, maybe just fat tissue, but we're going to monitor that now and hope that whatever that is, it's nothing harmful. I think that without this trial I wouldn't have been this alerted to check myself and get it checked so quickly.

If you get the drug, they do dose reduction and monitor your side effects. And my onc even said that I would start drugs for diarrhea same time that starting the verzenio. What I have heard, it is very well tolerated, so you might get away with very little side effects.

You can always quit the trial, no questions asked, so maybe if you enroll and make decisions depending on which arm you're on? Or try it for a while and quit if it's not good for any reason? Best of luck with whatever you choose <3


at the age of 38: 04/2017 stage 3c ER90+PR100+ HER-, 4 x docetaxol, 4x cef, 11/2017 double mastectomy (no reconstruction), 12/2017 rad x 25, zoladex every 3 months, Tamoxifen 20 mg, currently on Monarche trial but only in control group
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Jan 18, 2019 03:58PM beeline wrote:

Hi Minniesi, thanks so much for sharing your experience! That’s disappointing to hear you won’t get the drug if there’s a recurrence. It’s also not available in New Zealand — nor is Ibrance! — which is one of the reasons I’m keen to do it.

I have read about a possible rebound effect if you don’t take a CDK4/6 inhibitor long enough... of course no one knows how long “long enough” is and they have only studied in metastatic patients so far. But it makes me worried about dropping out (if I even get the drug!). I eventually decided to commit to 6 months and reevaluate then. Of course the moment I decided to do it, the trial coordinator wrote to say that they were closing enrolment here sooner than expected. I think I will just make it in but won’t know until May if I’ve been accepted or what arm I’ll be in. That said, smetimes it’s just nice to have the decision made!

I’m glad they were so quick to look at your swollen lymph node. I hope it ends up being nothing! x.


American in NZ. Dx’d at 42. Had to stop Taxol after #6 due to neuropathy. Randomised to control group in MonarcheE trial 😩 Dx 7/17/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 8/2/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/21/2018, DCIS/IDC/Paget's, Right, 2cm, Stage IIIC, Grade 2, 10/22 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 9/17/2018 AC + T (Taxol) Hormonal Therapy 2/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/24/2019 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 1/21/2020 Arimidex (anastrozole), Femara (letrozole)
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Jan 18, 2019 11:14PM vlnrph wrote:

Hei Minniesi - did you notice the tiny Finnish flag next to the white poodle in my signature? My mom’s grandfather was born on Hailuoto island. She and my sisters made a trip there but I have yet to visit.

There are so many rare diseases in that area due to the small, isolated population. Some labs don’t even test for the uncommon genetic mutations.

It seems like a long time until May for beeline to wait on getting into the trial. Perhaps there is a lot of paperwork or quite a few others who enrolled earlier that are being processed...

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jan 24, 2019 12:56PM Linda2119 wrote:

Hi, I'm in the trial and was randomized into the treatment arm. I started Verzenio on 12/20/18. I too want to do everything I can to prevent recurrence. I don't want to look back and think - I wish I had done the trial. My MO was very supportive and encouraging, although it meant changing doctors for the trial and commuting an hour to the doctor appointments. I have appointments on 1/30 and 2/14, then I go to every four weeks.

The diarrhea hasn't been fun. I'm going to get more proactive in taking the imodium - I have only been taking it after the diarrhea starts. I was having episodes every 3rd day, but it seems to have increased to every other day. I am taking 150mg twice a day. I may discuss a dose reduction soon, but I'm going to try the imodium first and see if that controls the symptoms better.

Good luck everyone,

Linda

Dx 10/5/2017, DCIS/IDC, Left, 2cm, Stage IIIC, Grade 2, 15/24 nodes, ER+/PR-, HER2- (FISH) Hormonal Therapy 10/18/2017 Arimidex (anastrozole), Faslodex (fulvestrant) Surgery 3/19/2018 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary; Reconstruction (left) Chemotherapy 4/18/2018 AC + T (Taxol) Surgery 9/8/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Radiation Therapy 10/24/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 12/5/2018 Arimidex (anastrozole) Targeted Therapy 12/19/2018 Verzenio
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Jan 24, 2019 03:40PM beeline wrote:

Hi Linda, your situation sounds a lot like mine! I will also have to travel (2 hours each way) for my appointments and change doctors. My MO has been quite supportive, though it is almost like he is supportive of the concept of CDK4/6 inhibitors in general rather than necessarily in my particular case. He thinks they will eventually replace chemo for HR+ BC but it has been hard to get an opinion from him about whether he thinks it will be effective for preventing recurrence. What has your MO said?

I have heard the diarrhea can be quite awful. I hope the imodium helps and am glad they will consider a dose reduction. Have you had much in the way of other side effects?

Thanks so much for sharing your experience so far!


American in NZ. Dx’d at 42. Had to stop Taxol after #6 due to neuropathy. Randomised to control group in MonarcheE trial 😩 Dx 7/17/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 8/2/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/21/2018, DCIS/IDC/Paget's, Right, 2cm, Stage IIIC, Grade 2, 10/22 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 9/17/2018 AC + T (Taxol) Hormonal Therapy 2/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/24/2019 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 1/21/2020 Arimidex (anastrozole), Femara (letrozole)
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Jan 24, 2019 11:42PM vlnrph wrote:

I did a reduction on the Verzenio dose to 100mg twice a day when even just 1mg (1/2 tablet) of loperamide= generic Imodium stopped me up to the point of being uncomfortably bloated, not wanting to eat or drink anything.

One thing that helps control the diarrhea is FiberCon, usually found in the laxative section. The active ingredient is calcium polycarbophil which has the somewhat unique ability to absorb excess fluid in the intestine, providing bulk for people who are constipated but also relief for runny stool. Folks with irritable bowel seem to get good results...

Thanks to all of you for being willing to participate in this trial - research is so important for those coming down this road behind us!

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jan 29, 2019 12:44AM kdrake1007 wrote:

beeline - I am in the MonachE trial too and just found out today that I was randomized into the drug arm. Will get chemo education again for this drug on Wednesday and will start on Thursday. I'm post-menopausal so I'm taking Arimidex for the endocrine therapy (started it about 3 weeks ago). I was so torn as to whether to participate, but like you, I want to do whatever I possibly can to prevent a recurrence.

vlnrph - thanks for the tips on dealing with the diarrhea! I have to travel for business about 11 days after I start and I'm hoping by that time I'll have figured out what I need to do to deal with it.

Linda2119 - The clinical coordinator said that dose reduction happens fairly often with this trial and usually after the first 2 weeks. You're about a month ahead of me. Anything in particular I should ask during my chemo education meeting?

Good luck to everyone!

Kim

Dx 3/15/2018, IDC: Tubular, Right, 1cm, Stage IIIA, Grade 3, 4/21 nodes, ER+/PR+, HER2- (IHC) Surgery 4/16/2018 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 4/26/2018 Lymph node removal: Underarm/Axillary Chemotherapy 5/31/2018 AC + T (Taxol) Radiation Therapy 11/14/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/9/2019 Arimidex (anastrozole) Targeted Therapy 1/31/2019 Verzenio
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Jan 29, 2019 04:43PM beeline wrote:

Hi Kim, how exciting that you got the drug arm! I asked my MO yesterday whether he thought abemaciclib would make a difference in early stage BC and he said the question is not if, but by how much! I sign consent in mid Feb and won't be randomised until I finish rads in a couple of months. Good luck and keep us posted on what you learn!

American in NZ. Dx’d at 42. Had to stop Taxol after #6 due to neuropathy. Randomised to control group in MonarcheE trial 😩 Dx 7/17/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 8/2/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/21/2018, DCIS/IDC/Paget's, Right, 2cm, Stage IIIC, Grade 2, 10/22 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 9/17/2018 AC + T (Taxol) Hormonal Therapy 2/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/24/2019 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 1/21/2020 Arimidex (anastrozole), Femara (letrozole)
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Jan 31, 2019 10:20AM Linda2119 wrote:

I'm so happy to have this forum to exchange ideas.

Vinrph - I took your advice on the fibercon and it seems to be helping. I really haven't had diarrhea in a few days - a miracle, really! Last week was the worst for me, but I was also dealing with some personal stuff, so maybe stress contributed? But thank you for the fibercon recommendation.

Other than the GI issues, I'm not having any problems with the verzenio. Kim - hoping your experience is good.

Stay in touch!

Dx 10/5/2017, DCIS/IDC, Left, 2cm, Stage IIIC, Grade 2, 15/24 nodes, ER+/PR-, HER2- (FISH) Hormonal Therapy 10/18/2017 Arimidex (anastrozole), Faslodex (fulvestrant) Surgery 3/19/2018 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary; Reconstruction (left) Chemotherapy 4/18/2018 AC + T (Taxol) Surgery 9/8/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Radiation Therapy 10/24/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 12/5/2018 Arimidex (anastrozole) Targeted Therapy 12/19/2018 Verzenio
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Feb 1, 2019 01:11PM kdrake1007 wrote:

Day 1 of abemaciclib was yesterday, so I'm 2 doses in today. I too am so thankful to have this thread to share information! I stocked up on Immodium and FiberCon yesterday. Fingers crossed!!

The polar vortex has left the area (yay!!) and the sun is shining!

Have a great weekend!

Kim


Dx 3/15/2018, IDC: Tubular, Right, 1cm, Stage IIIA, Grade 3, 4/21 nodes, ER+/PR+, HER2- (IHC) Surgery 4/16/2018 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 4/26/2018 Lymph node removal: Underarm/Axillary Chemotherapy 5/31/2018 AC + T (Taxol) Radiation Therapy 11/14/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/9/2019 Arimidex (anastrozole) Targeted Therapy 1/31/2019 Verzenio
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Feb 1, 2019 09:00PM vlnrph wrote:

With the FiberCon or generic calcium polycarbophil, be sure to swallow the tablets with a good amount of liquid, as the package advises. If you take it ‘dry’ it could swell up and block your throat/esophagus. I find it helps firm things up enough sothat peristaltic action in the intestine doesn’t automatically progress to loose, watery stool.

Another way I decided to cope with Verzenio diarrhea is to invest in a supply of disposable undergarments designed for fecal incontinence. I intend to wear them on airplane flights, once through security (in order to avoid getting a pat down from a TSA agent!) or anytime ready access to a bathroom may be difficult...

Kim, do they having you starting on 150mg twice a day?

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Feb 3, 2019 11:15AM kdrake1007 wrote:

vlnrph - Thank you! Yes, I’m taking 150mg twice a day. Today is Day 4 and so far so good! When should I expect the diarrhea to arrive?

I had wondered about adult undergarments for my business travel. Most of my flights are short, no more than 2 hours. But I know the flight duration won’t matter if I gotta go!

Do you take any supplements? The clinical trial coordinator couldn’t tell me any that I shouldn’t take (other than the grapefruit restriction). She said what I’m taking now is fine (B, D3, fish oil, multi vitamin) but I want to add biotin, calcium, magnesium & zinc. But I won’t add any new supplements for at least a couple of weeks and I’ll check with her.

beeline - good luck with rads! The rads thread was a wonderful source of information! My skin held up much better than I thought it would

Kim

Dx 3/15/2018, IDC: Tubular, Right, 1cm, Stage IIIA, Grade 3, 4/21 nodes, ER+/PR+, HER2- (IHC) Surgery 4/16/2018 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 4/26/2018 Lymph node removal: Underarm/Axillary Chemotherapy 5/31/2018 AC + T (Taxol) Radiation Therapy 11/14/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/9/2019 Arimidex (anastrozole) Targeted Therapy 1/31/2019 Verzenio
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Feb 3, 2019 03:25PM vlnrph wrote:

Verzenio diarrhea supposedly starts around day 6. I copied the following from our stage IV thread:

“DIARRHEA AND ITS MANAGEMENT
To put the adverse events into a bit of perspective, although it is true that with Verzenio, all-grade diarrhea was between 86 - 90%, yet serious (Grade 3+) incidence was 13 - 20% but this is aggregated across the trials, and note further that diarrhea incidence is concentrated during the first month, and more narrowly the MTO (median time to onset) of the first diarrhea event was 6 days, lasting a median duration of just 6 days for Grade 3. Furthermore, for the most recent MONARCH-3 RCT, grade 4 diarrhea was zero, and grade 3 diarrhea was just 9.5%.

An aggressive proactive regimen of:

- high-dose loperamide/Imodium (4 mg but NOT ever de-escalated down to 2mg (and up to 16 -32 mg daily);
- "Big Pink" (Petpto Bismol Extra Strength) used in "priming" mode (started on day 4 and also used for immediate relief during loperamide dosing;
- budesonide (Symbicort) for recalcitrant cases;
PLUS "adjunct interventions:
- high-dose probiotic (28 billion microorganism count in two divided doses), and
- electrolyte powder (most of the refractory diarrhea was analyzed to be secondary to disturbed microflora and electrolyte imbalances)
- at least 12 8 oz glasses of fluid daily, 8 of which should be electrolyte-enhanced

brought the rate of diarrhea-related drug omission or dose reduction down from 22% (MONARCH 1 and 2) to under 1 - 2% in the cohorts run by my research teams in India and the Middle East.
NOTE: We found that the adjunct interventions of Big Pink, high-dose probiotic, electrolyte rebalancing, and assured fluid intake were at least important as the conventional agents, and in cases that seem intractable, converted to success, given that therapy-driven diarrhea inevitably causes GI tract flora, and electrolyte, imbalances, aggravated by inadequate hydration. Also critical was "through-and-through" loperamide dosing: 4 mg at each episode, but NOT de-escalating - as current protocols do - down to 2 mg after first (that de-escalation regimen we found indifferently effective, with large numbers of failures.

And although not reported to date, I note that in the MONARCH 3 trials the incidence of ANY grade diarrhea dropped to just 2% (courtesy of data provided by Levi Garraway at Lilly).“

The suggested loperamide dose was too much for me. Calcium is good to take for bone health when on an aromatase inhibitor like anastrozole. A little magnesium is fine but extra can contribute to loose stool. I read something about biotin recently which I will try to find again. All things in moderation is probably safe advice.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Feb 4, 2019 03:26PM beeline wrote:

Thanks vlnrph, I am bookmarking this for later! How long have you been on verzenio? I hope it works for you for a long time.

kdrake, good luck on your business travel. I hope you don't end up needing the adult undergarments, but I can see wanting to be safe rather than sorry on a flight, especially for work. Let us know how it goes!

Linda, I hope the diarrhea has eased up for you. I see that you were on faslodex and arimidex. I've never seen that combination before and especially not in early stage BC. Was that also part of a trial?

American in NZ. Dx’d at 42. Had to stop Taxol after #6 due to neuropathy. Randomised to control group in MonarcheE trial 😩 Dx 7/17/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 8/2/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/21/2018, DCIS/IDC/Paget's, Right, 2cm, Stage IIIC, Grade 2, 10/22 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 9/17/2018 AC + T (Taxol) Hormonal Therapy 2/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/24/2019 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 1/21/2020 Arimidex (anastrozole), Femara (letrozole)
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Feb 4, 2019 03:53PM vlnrph wrote:

I took Verzenio for about a week in October 2018 then had a break prior to dose reduction then another hiatus the following month due to radiation. I’ve only been on continuous dosing since early December.

The biotin info I read recently was regarding the ability of milligram amounts to interfere with lab tests, especially thyroid assays. Stick to lesser amounts (microgram range) or hold off on taking it a day or two before blood draws.

Note: except for calcium which is too bulky to add in significant quantity to an average tablet, your general multivitamin/mineral combination should provide sufficient back-up to a well rounded diet. Unfortunately, most of our food comes from depleted soils so many of us can benefit from supplements.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Feb 5, 2019 08:00PM kdrake1007 wrote:

vlnrph - Thank you!! Today is day 6 so we’ll see how things go the next few days. So far so good!

My dexa scan came back with no issues, normal bone density. I’d like to keep it that way which is why I was looking at taking the zinc, calcium & magnesium supplements that along with the multi vitamin are within the RDA.

I did mention the biotin to my MO and she said there was a possibility of hair loss with mega doses. So I’ll be avoiding that for sure ;-)

I did wonder about a probiotic. I’ll ask my MO about that one. I haven’t been drinking water with electrolytes but I’m thinking it wouldn’t hurt to add that.

All things in moderation is kind of my mantra!

Kim

Dx 3/15/2018, IDC: Tubular, Right, 1cm, Stage IIIA, Grade 3, 4/21 nodes, ER+/PR+, HER2- (IHC) Surgery 4/16/2018 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 4/26/2018 Lymph node removal: Underarm/Axillary Chemotherapy 5/31/2018 AC + T (Taxol) Radiation Therapy 11/14/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/9/2019 Arimidex (anastrozole) Targeted Therapy 1/31/2019 Verzenio
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Feb 11, 2019 03:42PM Linda2119 wrote:

Hi, Kim and vlnrp,

Vlnrp - thanks so much for all the info. It's a bit overwhelming - that's quite a protocol.

I've started taking consistently 1/2 of an Imodium with my night dose and 1 fibercon with my morning. It has significantly reduced my diarrhea, so far so good. I have an episode every third or fourth day - quite tolerable.

Kim - how's it going for you? Please send us an update.

Take care,

Linda

Dx 10/5/2017, DCIS/IDC, Left, 2cm, Stage IIIC, Grade 2, 15/24 nodes, ER+/PR-, HER2- (FISH) Hormonal Therapy 10/18/2017 Arimidex (anastrozole), Faslodex (fulvestrant) Surgery 3/19/2018 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary; Reconstruction (left) Chemotherapy 4/18/2018 AC + T (Taxol) Surgery 9/8/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Radiation Therapy 10/24/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 12/5/2018 Arimidex (anastrozole) Targeted Therapy 12/19/2018 Verzenio
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Feb 12, 2019 04:35PM beeline wrote:

It is quite overwhelming! Glad the diarrhea has been manageable. I am still aways behind you all, but but met my new MO and officially signed consent on Monday. Screening and randomisation will take place after a 2-week washout period following rads and then the trial will begin a week later, so I expect that will be early April. it feels both far away and like it's coming up quite fast!

American in NZ. Dx’d at 42. Had to stop Taxol after #6 due to neuropathy. Randomised to control group in MonarcheE trial 😩 Dx 7/17/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 8/2/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/21/2018, DCIS/IDC/Paget's, Right, 2cm, Stage IIIC, Grade 2, 10/22 nodes, ER+/PR+, HER2- (IHC) Chemotherapy 9/17/2018 AC + T (Taxol) Hormonal Therapy 2/12/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 2/24/2019 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 1/21/2020 Arimidex (anastrozole), Femara (letrozole)
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Feb 14, 2019 09:57PM kdrake1007 wrote:

Hi Linda,

So glad you've been able to manage the diarrhea! Been a busy week, just got back from my business trip last night. Today is day 15 and I've had 3 episodes of diarrhea. Fortunately only one was during the business day on my trip. I took Imodium after the first episode on day 9, but not after the other 2. I'm going to try the FiberCon starting tomorrow morning to see if I can head off future episodes. Had my first follow up visit today after starting and they'll look at my labs to determine if I need a dose modification - I'm taking 150 mg twice daily. Forgot to ask about the probiotic today.

Sad

Just started having some twinges of joint pain a couple of days ago, but I've not been exercising or walking so I'm hoping once I get that going again it'll help alleviate the still somewhat minor pain.

Overall, I'm relieved that the diarrhea has not been too bad so far - the prospect had me really worried! I travel again next week and then will be home for at least a week.

Hope your weekends are SE free and not too cold or snowy!! We're expecting 3 - 7" of snow tomorrow!!

Kim


Dx 3/15/2018, IDC: Tubular, Right, 1cm, Stage IIIA, Grade 3, 4/21 nodes, ER+/PR+, HER2- (IHC) Surgery 4/16/2018 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 4/26/2018 Lymph node removal: Underarm/Axillary Chemotherapy 5/31/2018 AC + T (Taxol) Radiation Therapy 11/14/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/9/2019 Arimidex (anastrozole) Targeted Therapy 1/31/2019 Verzenio

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