Abemaciclib Verzenio for Stage IV
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One way I can look at the last year with Ibrance and Verzenio is at least I gave it my best shot, no need to look back and wonder or revisit. Tried my best and some things, as we all know to well, are beyond our control. Time to move on.
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Divine, I got three good years out of xeloda. Longest PSF I’ve had in a decade of treatments. Would go back in a heartbeat. May you live long and well on it.
I was active on that thread and left behind a lot of pointers for HFS side effects. You could probably search for my posts in that threas
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hey Luce, I answered on another thread- this paper finds reducing sugar helps Ibrance or Abemaciclib work better on sensitive ER+/HER2- cells
Whoa!! Hope you are feeling better today- that is a lot of fluid in your lungs!!
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Hi all. Yesterday I was sent to the ER because I have had some chest pressure for the past 5-6 weeks, following this weird burst of pain across my chest that took my breath away for about 5 min (on Jan 31). No additional painful episodes, just some intermittent pressure across the front of my chest and around my back. My MO actually put me on prilosec thinking it might be GERD. Since the prilosec had done nothing and I was still getting intermittent chest pressure I called the doc and they wanted full cardio work up. Cardio was fine but they found I have interstitial lung disease/pneumonitis!!! I am not out of breath, have no cough, no difficulty breathing, no pain. Just this weird pressure in my upper chest and around my back (imagine a rubber band around my upper chest. CT finding was mild inflammation, ground glass opacity in both lungs. I was in total shock. Looks like about 3.3% of patients get this. Lucky me. Seems with the one symptom, I cross from a Grade 1 to Grade 2. Will hold verzenio until symptom resolves (please let it resolve!), resume and then another scan in a few weeks to see if lung issues resolved. Verzenio has been working for me and I just seem to have gotten the diarrhea managed after almost 5 months. I pray the break helps and I can go back on. The verzenio is keeping my liver mets in check and I want to keep with this MOA as long as it helps. Ibrance was working but wiped out my ANC so I had to switch to verzenio after 6 months. I am on 150 2x/day, so maybe even lowering the dose will give me more time. Anyone else have lung issues???
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cure_ious: thanks for reading the paper for us! That’s great news, that reducing sugar (and carbs) may resensitize cells to CDK4/6 inhibitors. Something actually doable
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I was on X for 5 years, and just because I had progression and my TM continued to rise, my MO let me stay on X as I have never had any pain. I still don't, but my markers took a huge rise the last few months of 2019, hence the change to V. My MO pretty much lets me call the shots. He gives me the options, and tells me it my ship and I'm the Captain. SE's on X are cumulative, but they seemed to wear off after awhile and change some.
Good luck on X, for those that are switching.
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H&G sorry you got that dreaded SE, pneumonitis. I’d think about switching but, yes, tough to abandon a treatment that’s otherwise working.
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Thanks Luce. We are going to see what happens. Off Verzenio right now and on a week of prednisone. Will get a CT scan in a week to see if resolving, although it will likely take a bit longer. And I have a pulmonary consult. No major move yet, but just really hoped to get more time from this MOA. Recent PET scan shows liver mets (8) still stable as complete metabolic response and I worry about those liver mets!! But now bone met has popped up on L2, so that will take a work up next week and more decisions. No peace for us I guess?
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Anybody else have recurring styes in your eyes? Sores in your nostrils? I've been on Verzenio + Faslodex for a year and this just keeps happening.
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Not me, but only on my 3rd month. Just terribly watery eyes and D
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Chronic bleeding sinuses in my case!
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Hi All,
Happy Friday. I know many no longer work but for me, this one has been crazy as the COVID situation has a significant impact on what I do.
I wanted to share some information on potential problems with ashwaghanda. To remind folks, I have been having problems with wonky kidney function numbers since starting Verzenio. My creatinine levels were rising rapidly which is, of course, a concern as poor kidney function can impact access to treatments down the road.
We reduced my dosage from 200 mg per day to 150 mg per day which I thought was going to be the ticket. There was an immediate and quite remarkable drop in creatinine. However, doesn't appear to have been sustained. Last two blood tests the creatinine bounced right back up to where it was pre dose reduction (although no signs that it is going up). In response my MO has cut out the bisphosphonate infusions for now (Pamidronate in my case) as it can also impact kidneys - I don't think that's the problem though as I have been on this drug for over two years and the increase in creatinine only started recently.
He also asked for a list of everything I was taking including complementary treatments.Interestingly, the cancer agency pharmacy came back recommending that I stop taking the aswhaghanda while I am on Verzenio as there is potential for interaction which may decrease the effectiveness of the the immunosuppressive agent. Hmmm... perhaps the improvement in my WBCs/lymphocytes and neutrophils is not a good thing?
I will stop taking it and we continue to monitor the creatinine/eGFR. We'll see what happens.
Hope you are all well and staying safe in these challenging times.
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Interesting SS. I will watch mine until my next labs and quit the ashawaghanda if I need to and see what happens. Let us know if you see a difference in your labs while off of it. I'm only on 100mg 2 X a day.
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Unfortunately, I just found out Verzenio is not in my country's health registry.
In this case that's on the pharmaceutical company- any ideas as to how I could reach out to Lilly to persuade them to register Verzenio in Costa RIca? Ibrance was registered quickly and Verzenio is already in extensive use throughout the world, so it should be straight forward.
Are there any patient advocacy groups that could possibly intervene? Tried the usual channels (contact form, calling) but was given the run around, so I'm out of ideas. Would appreciate any suggestions.0 -
To Roseo: My oncologist did it for me - there is a person in the oncology department who assists my oncologist in filling out requests to deal with exceptions i.e. meds not normally covered by the province's medical insurance and it goes to either that insurance, or any other group that might be willing to cover the costs - so to my private insurance, and in this case to Lily but it was initiated by my oncologist on my behalf. Hope this helps.
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Hello nnc, thank you for sharing your experience. In my case, my oncologist (who is great) is willing to prescribe Verzenio, but unfortunately the drug can't be imported or sold in Costa Rica unless Lilly registers it with our health ministry. Maybe our market is tiny so they haven't bothered, oh well...
EDIT: Pleasant surprise... I heard back from Lilly, Verzenio will receive the register in April and will be launched in July here.0 -
Hi Luce. Well after being off verzenio for 12 days, 1 week of prednisone, and another CT, they started me back on verzenio. Will see what happens. They are going to keep a close eye on it. Getting biopsy on new bone met L2 this week, so we will see what that tells us....
It was great to have almost 2 weeks where I could eat anything I wanted and not pay the GI price. But I want to keep beating back these liver Mets......
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So thankful that I found these posts. I've been frustrated with my Verzenio experience. As of today, I am off it because the shortness of breath heart issues were so severe that I was nearly passing out. I am resting for a week and then see the Dr next week to start ibrance and continue the Faslodex and Xgeva (I think). Seems like I'm one who is sensitive to dosages. I got through the diarrhea okay with V but honestly was afraid I was going to die if I stayed on it. After reading your posts, I see many have had the same experience. I would like to add the Ashwaganda and Vegan Iron to see if that helps. Thanks and if you have further suggestions, I'm all ears. Wishing everyone the best in their journey.
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Hi Dibel,
It can be a challenging treatment. One thing on the Ashwaghanda, as per my recent post, my MO wanted me to stop taking it. Apparently it can impact the efficacy of the Verzenio. Suspect it would be the same for Ibrance.
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Sadie, did your MO provide any detail on the potential interaction between Verzenio and Ashwaganda? Do the use the same enzyme to be metabolized
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Hi JFL.
I don't have a lot of details. We were trying to figure out why my creatinine was continuing to climb. It dropped immediately after I reduced the dose of Verzenio and then jumped right back up to where it had last been. In looking at other culprits, he asked for a list of all the medications I was taking - sending it to the Cancer Agency pharmacy. They came back advising that I not take Ashwaghanda while on Verzenio due to potential interactions that may decrease the effectiveness of the immunosuppressive agent. My take is that, while we view the immunosuppression as an unwanted SE of these treatments, this is a necessary and intentional element of the drugs action. Having said that, I did not press further and stopped taking the supplement. I've burned through a few treatments already and, given that I couldn't tolerate Ibrance, wanted to ensure that I give Verzenio a fighting chance.
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Hi roseo! We spent nearly two weeks in Costa Rica this past January, missing three big snowstorms and enjoying the warm weather, beautiful scenery and wildlife. Now that future travel plans are all on hold due to coronavirus, I'm glad we went when we did.
I've shared this previously but, as a reminder, taking two calcium polycarbophil tablets daily has helped me control the diarrhea. Look for it next to brand name FiberCon in the laxative section (of all places...)
My CA 15-3 tumor marker hit a new low with my most recent labs. Also, my hemoglobin started creeping up over the past few months easing the fatigue which had plagued me. White count remains well below normal however. Due to that situation and not having much energy, I was social distancing for almost a year without calling it that.
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I wanted to reply to you about the Verzenio. We are sort of opposite as I am waiting to go on the Ibrance after not doing well on Verzenio. I got Pneumonitis and so am on steroids until that clears up. Then the plan is to move to Ibrance. Do. you mind me asking what the Ibrance issues were for you?
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Hi Dibel,
I think the question was for me. I had to stop Ibrance due to issues with my RBCs and hemoglobin. They kept dropping with each round, even after dose reductions. It got to the point that I was borderline for needing a transfusion. Onc said stop! It took months for the numbers to get back to near normal.
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Thanks for your reply. I'm sure you were feeling pretty bad then and hopefully on the mend. I think they'll talk to me this week about which direction we're going but I have to get this lung issue resolved. I've only been on my Faslodex and Xgeva for this month...due for injections on Tuesday and they will review my bloodwork then. Consult via Tele conference with Pulmonologist on Monday so we'll see what he says. I really want to get off the steroids. They are so tough. Hang in there and thanks so much for getting back to me.
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Hello dibel. I also developed pneumonitis/ILD but low grade. My symptoms were not what I one expected. No cough, no SOB, but pressure in my chest and back. I was on prednisone for a week, off verzenio, and my lungs cleared in about 2.5 weeks and I went back on verzenio at the same dose.....so far with no further lung issues. What grade was your pneumonitis? First occurrence? I hope you are feeling better. Interested in what pulmonologist says.
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I am so interested in how the fibercon works so well for some people to stop the verzenio-associated diarrhea. I have been taking lomotil for a long time (2x/day) and also supplement with immodium. I think the lomotil is no longer as effective as I am relying more and more on immodium and more frequent very loose stools. I might have to take more and more lomotil, which I do not want to do. I picked up the fibercon, and popped 2 pills lunchtime Day 1. All pretty good during the day except some cramping and diarrhea before bed. Day 2 ok, but still some diarrhea and now with cramping. But after day 3, it was acting more like a very strong laxative on me....painful cramping, explosive diarrhea and night 3 was horrible. I was bummed as I was hoping for a little OTC miracle. I am stopping the fibercon and will see how I do on the immodium only, weaning myself off lomotil. I am so tired of taking so many pills...but praying they keep working. The immodium was never too strong for me. I am also at the point of asking to lower the dose of abemaciclib from 150 to 100 2xday. Will see after June scan if it's still working. Bone mets appearing.
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Hi HopeandGratitude,
Where did you hear about Fibercon? I was surprised to see your post as, unfortunately... you got a bum steer.. literally! Fibercon is a laxative to help constipation and bloating. It's a way to add fiber to your diet through a pill form. The opposite of what you would need for abemaciclib related diarrhea.
I'm sorry that you are still having so much trouble with diarrhea. I was fortunate as, even when I was on the highest dose, I didn't have the big D several times a day. The funny thing is, now that I am on 150 mg once a day I still have diarrhea about once a week or so. There doesn't seem to be any rhyme or reason to it. Suddenly severe cramps which lead up to the watery stools. I've learned to live with it but it can be limiting.
I'm holding out hope that the treatment will keep working.
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Sadiesservant - Thanks for your input. You are quite right! I thought the EXACT same thing but read it in this thread and in other forums. I did find through some reading that for people with IBS, this soluble fiber in fibercon can actually work to reduce diarrhea so I tried the experiment and paying for it BIG TIME still today - feeling horrid. It will pass but UGH, it was like a triple whammy. I seemed to have had it under some control before but then switched to examestane (from letrozole) and started faslodex and xgeva and the diarrhea worsened again. Just trying to feel normal in some sense, but I guess those days are over.
thankful for what I have.....
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As a retired pharmacist, I need to clear up the confusion about calcium polycarbophil which is FiberCon.
It is indeed a bulk forming ‘laxative’ in laymen’s terms however the active ingredient absorbs excess fluid in the lower GI tract so it does work to counteract diarrhea. I take it myself with no problem.
I’m surprised by the experience Hope & Gratitude reports. I assume she took more than the initial dose but tried it for three days. Being a non-stimulant agent cramping, which can occur with senna or bisacodyl, should not result unless the intestines were reacting to the presence of solid stool when previously they just passed loose liquid...
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