Abemaciclib Verzenio for Stage IV
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Maaki- yes, it's psyllium.. It's fiber, so if taken with lots of water, it can at as a laxatives- it balances things out. It absorbs a lot of water, so it seems to soak up the excess liquid in your gut and provide some bulk. You'll need to adjust the amount and frequency you take it to suit your needs. Some others have talked about FiberCon, which is another fiber product in pill form, with the same result. I expect you have something similar under a different product name.
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Thanks, now it is clear...yes we have many psyllium or other fiber products I did not understand how laxative can help with diarhoe, but I understand now. I will try it.
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Maaki- metamucil is most commonly used for constipation but because it works mechanically to have a water-holding effect in the intestines, it seems to help bulk up watery stool. A number of people on verzenio have found that metamucil 2x per day does help to bulk up the stool. Occasionally loperamide can be added as a supplement if stool may occur more frequently or more loose than usual when using metamucil.
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I want to shout from the rooftops: my white blood cell count today was 4.1! It has never been that high this year and when I was on Ibrance, I continually hovered at 2.3, which is too low! Thank you Verzenio! I dropped from 150 mg to 100 mg last month. I felt a LOT better. I hope you all are doing well.
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sadiesservants
Thank you for your reply. I’m taking Metamucil once a day and it seems to help with the diarrhea but still having the stomach pain. Maybe not as severe but enough that I feel bad.... was hoping it would go away with time but maybe not. Thanks again.
Kathy
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Woodlands
Congratulations
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That is great news Woodlands. Thanks for sharing that with us.
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I haven't heard of Fibercon. That's worth a try. This week I'm doing testing for SIBO (small intestine bacterial overgrowth) to see if there's a non-Verzenio cause of the diarrhea. I take 4 Imodium per day and the gastro. saysI can take up to 8. He's also prescribed lomotil but I don't want to take an opiate.
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Maaaki - Metamucil is a brand name product here in the states that is primarily psyllium husk. It comes in a powdered mix, capsules and I think they even sell a wafer version.
Thanks all for the suggestions. I feel silly being so caught up over something like hair growth, it's just been a hard adjustment. Honestly, at work I don't even bother with makeup and hair since I have to wear a mask and goggles. Most of my coworkers wear a headband with buttons to keep the mask loops off the top of our ears. I took it a step further and bought myself a couple of cute surgical caps off of Etsy. Problem solved! It's beanie weather too, so that helps.
This weekend I decided to let go of my attachment to long curly hair. I loved it when I had it but I'm not sure it's coming back. My friend cut my hair in a cute pixie and I love how easy it is. It will be great for wearing a swim cap too when Oregon allows gyms to open again. In the mean time I try not to obsess about it. There are bigger things in life to be spending my energy on. I dug out the Christmas boxes and got a few things out. I splurged and hired a friend of a friend to come hang lights for me. After having the rod put in my leg I don't bounce as well as I used to should I fall off the ladder. I am trying to make Christmas festive even though this year is just hard for everyone I think.
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Sadiesservant
Just thought I would catch you up. My stomach pain persisted and I ended up going to doctor. She said to stick with a Metamucil regime and see how it goes. I was only taking one pill so that iswhy it wasn’t working so good. Now I’m taking two in the morning and two in the evening. The pain has subsided quite a bit. I guess it’s just a matter of trial and error. I’m sure I’ll get the right dose sooner than later. Hope everyone is doing good .
Kathy 🎄
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Hi ladies, thanks for the tips about fiber. I have bought psylium and it seems to be working. Today I am starting 8th day and no diarhoe, only big flatulence 😀.
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I would appreciate a private message reply if this topic is too sensitive to post replies to. I am 63 years old and in menopause. After Ibrance for 6 months and now Verzinio for three months, I am 95% estrogen-free. This is helping fade the six bone mets I have. Each bone scan shows the mets getting lighter and lighter. My oncologist says this is good news because it means the cancer is not active. The mets will never disappear though. The sensitive subject is sex. Do you have any products to recommend to help me be wet inside? Sex is currently painful. My oncologist prescribed Lidocaine Hydrochloride 2%, but I don't want to numb my husband. Thanks for the advice and suggestions.
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Woodlands - maybe talk to your GYN? Mine suggested a lubricant called "wet" or a similar product, but also suggested I call him if that was not enough. I got the idea that there are some prescription solutions out there.
There's also a thread here on BCO (somewhere) about sex/intimacy concerns.
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Two months ago my wife switched from palbociclib and letrozole to abemaciclib and exemestane, owing to a significant rise in her tumor markers. Scans didn't indicate progression, but her tumor markers went up 3-5 fold over a series of 3 blood tests. At one month into abemaciclib plus exemestate, her rate of increase in tumor markers had slowed significantly. Now, at the two month mark, her tumor markers are falling. CA-15 fell 13% and CEA fell an amazing 31%. Scans show stability. I wanted to share this with the group to help support the idea that not all cdk4/6 inhibitors are the same, and that a switch from one to the other may work.
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Great news Husband. I do think there is merit in cycling through the CDK inhibitors if you can get your MO to agree. I may push for Ibrance again in the future as I had to stop due to anemia, not it failing.
I’m also interested in the fact that you shifted treatments despite stable scans. I have found that scans may not be telling the whole story in my case either. Unfortunately my TMs don’t seem to be very helpful either.
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Hi Everyone
Just checking in. I hope everyone is having a nice holiday season. I seem to be tolerating Versenio/Letrozole ok these days! My blood work has been great and my doctor has me going in once a month now instead of weekly. I’m sure without the help of Metamucil I wouldn’t be doing so well because of the diarrhea. Husband, so glad your wife is doing better as well.
Happy New Year to you all.
Kathy
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Just started Verznio 1.5 weeks ago, after Ibrance caused severe neutropenia. The tummy issues started day 2, and every day I spend part of the day feeling kind of crummy. Has anyone had neutropenia due to Verzenio? I go for blood work wednesday. Also, has anyone had their dose reduced due to diarrhea and stomach trouble? Did that help?
I did go back and read that metamucil seems to help a lot of people, so I am going to try that. Right now I have been using zofran (at first I was nauseous, and thankfully zofran constipates me....which worked well with this situation), but that only helped the first three days. Now I have been taking immodium when my stomach starts to get noisy, which so far is working most of the time. I just can't imagine doing this for 2 years....ugh.0 -
Hi Alden722 - I have never had issues with neutropenia on Verzenio. My course is a little different as Verzenio was my first line of treatment after diagnoses so I have never been on the other CD4/CD6 inhibitors. On my last set of labs my ANC was 2 and my WBCs were 4.1 which are my best values since starting Verzenio. I do sometimes still have nausea. I didn't get the really bad diarrhea with it that was expected but I do occasionally get it if I go off the rails and eat foods that I usually don't. My last mistake was a random craving for KFC that ended poorly. I don't usually eat meat, let alone fried chicken so my system wasn't having it. Zofran is my go to for nausea and I also have had really good luck with peppermint tea and making a "golden milk" with coconut milk, turmeric, ginger, cinnamon and honey when my guts are upset.
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Alden727. I was on IBRANCE and my ANC levels were too low even with trying different dosing regimens. I switched to VERZENIO. I was able to manage the diarrhea for a while, but then even with taking both Imodium as well as lomotil the diarrhea was not controllable. I dose-reduced to 100 mg two times a day and that was much more manageable and I felt human again, but still had loose stool and a little too often. I started on the Metamucil 2x/day and that has been a game changer. I do have to take Imodium every now and then, but it’s more like one pill versus the maximum in a day. I watch what I eat but pretty much have a very varied diet. I find I do need the protein and get that with meat and eggs. I cannot tolerate beans so no good as a protein source. I also have to watch out for any of those new sugars - sucralose and xylitol etc. that lead to bad cramps and diarrhea so I have to check everything for sweeteners.
Finding side effects vary with time, but managing them all so much better now as I get used to it. Praying it keeps working for a long time....for us all!
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Hi ladies, congratulation to Husbands wife on great results. I started Verzenio in similar situation amonth ago, after small progression in two vertebra on Kisqali and stereotactic radiation in November. My slightly elevated markers went down (all was in normal range though) during first three weeks of Verzenio (it can be also the result of radiation on these two mets, though). I feel fine on the drug, do have a little diahrea and cramping sometimes. I did not need to take immodium, ocasionally I take fiber. I have developed rash on my back, but nothing serious. Generally it is tolerable drug for me, I can excercise which is very important to me. My scans are in february and march, so I will know then if it is working. I wish you all better year 2021
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I'm 5 months in with Verzenio and my neutrophils have actually improved (they went very low when I had the first bout of cancer 8 yeas ago and gradually creeped back to 2). I'm now at about 3. The diarrhea hasn't improved, but I have other contributing factors such as colitis. Fiber actually made things much, much worse for me. My gastroenterologist has me on Lomotil at night and then 2- Imodium during the day which makes it tolerable, about 2-8 bouts of diarrhea per day. I'm skiing and running and just bring TP with. The nausea has completely gone away.
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I'm 5 months in with Verzenio and my neutrophils have actually improved (they went very low when I had the first bout of cancer 8 yeas ago and gradually creeped back to 2). I'm now at about 3. The diarrhea hasn't improved, but I have other contributing factors such as colitis. Fiber actually made things much, much worse for me. My gastroenterologist has me on Lomotil at night and then severalImodium during the day which makes it tolerable, about 2-8 bouts of diarrhea per day. I'm skiing and running and just bring TP with. The nausea has completely gone away.
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Oh lehrski
What dose are you on? Don’t be afraid to consider a lower dose. I have continued to have worsening diarrhea, although not to the extent you have experienced, after more than a year on the drug. I was losing weight recently with a combo of side effects from radiation treatments and the diarrhea so my MO dropped the dose again. Now on the lowest recommended dose after previous reductions due to nausea (initially) and then skyrocketing creatinine levels.
I’m comfortable with the dose - this is a challenging drug - but hope you can find something to make it a bit more bearable.
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I am having skin problems - skin is peeling, rashes. Is anyone else experiencing this?
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NNC - I also developed a rash on my third month of Verzenio on my foot and my torso when my dosage was 150 mg. When my oncologist changed the dosage to 100 mg, the rash went away. My face is much drier than before I took Verzenio, but I believe it is because there is now very little estrogen in my body due to the hormone therapy and menopause. I will have to start putting cream on.
I also feel a lot better on 100 mg, started dancing with an online streaming program, and my diarrhea is less. My numbers are very good, and my bone mets have lost their bright glow from the first bone scan a year ago. I have been told that the cancer is currently no longer active. My WBC is 3.8 and my ANC is 1.52. We check my blood every month. My tumor markers went from 25 to 26, and I was worried about that, but my oncologist assured me it can go up to 35, and there still would not be a problem. I have worked on being a happy person and enjoying life as a retired couple, as I believe this will help me with this diagnosis. Good luck with the side effects!
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arovka thank you for the valuable information! jI am currently asking my MO to consider Verzenio since i have progressed on IBRANCE in the past and he is somewhat resistant. He is consulting with his partners. I realize everyone is different but this information in one place is valuable. Thank you.
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woodlands I haven't read the entire thread but saw your post about librication. I'm divorced and not sexually active but I know there is a I think laser treatment you can do to kind of replenish the cells in the vaginal. I'm also 63 and have been on estrogen blockers for years and I had general discomfort down there and had the treatment. I think it involved a few monthly t reatments. It's a painless treatment like a vaginal sonogram.
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Thanks for the advice. My general doctor suggested Replens, which is sold over the counter. You use it every 3 days. It helped a lot, along with a lubricant.
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Thanks Woodlands for the reply. I think I am worried as I have metastatic spread to subcutaneous area near my clavicle (where I have metastatic cancer in the lymph node) - I had the skin resected as I needed to have a biopsy there anyway post-clinical trial. The scar has always looked a bit troublesome with 3 brown dots but now it looks red and a bit like it did before I had the surgery. But I have been rationalizing it with the fact that I had a really bad rash recently and currently am having skin peeling in hands and ankles. I am home almost always and the heating isn't helping either. I will contact my oncologist but procrastinating to see if it improves on its own. It is weird as I have a feeling that the cancer is probably always there although perhaps not in major organs. I am on Verzenio 100 mg twice a day and am feeling fine and MRIs are stable and tumour markers are good these days. Happy New Year to everyone on the blog. Hang in there!
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Hello to everyone here. I'm changing course from Piqray and joining you all on the Verzenio path. I start tomorrow on 150mg twice a day. Not looking forward to the Big D, but I'm armed with Metamucil after reading many posts recommending it.
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