Abemaciclib Verzenio for Stage IV
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Kabuki - my bloodwork was checked at two weeks the first time, but I'm quite sure that was only by chance as it was my monthly appt. It just it took awhile to get the Verzenio approved by insurance. September seems a long way off. I'm surprised the aren't having you come in, even just for bloodwork, before then.
I wanted to mention my tumor markers quadrupled the first month on Verzenio, then took a couple of months to come back down. My first 3-month scan showed flare phenomenon in new area, but my largestst liver tumors were significantly smaller (about 1/2).
I have only recently been able to see scans my MO hasn't released. Your system shows that he hasn't seen it? Maybe you'll want to consider a new MO. I didn't care for the interim MO, I had in the beginning. My current MO has a communication style that makes me - and my husband - much more comfortable.
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Hi everyone -- I just want to follow up in case others have this issue. I had posted earlier about not being able to start Verzenio bc of elevated liver numbers. It looks like the Lovenox injections I recently started were causing the elevation. Will switch blood thinners and hope to be able to start Verzenio soon.
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That is interesting that you mention spinach. When I first started Verzenio in October 2020, I remember reading to stay away from spinach, so I have.
Whatever works for you! So far I continue to tolerate Verzenio + Letrozole and my onc said I can stay on it for years, as long as it is effective for me.
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Thanks for responding Star2017 and SeeQ. The original clinic 11 years ago that made all the mistakes is the same organization but was at a different site. That site is shut down and the office staff is gone. This time around is so much harder as I felt that I was in good health when I was first diagnosed 11 years ago. I was able to work during chemo and radiation. Now, I sleep 16 hours a day and am exhausted and sick for the few hours that I am awake. I can’t stand for long and cannot do the smallest of chores. I’ve turned into an invalid.
The on call nurse that I spoke to yesterday told me that they had not received my Pet scan so the oncologist was unaware of the new cancers found.I can’t understand this as I got the scan at the same hospital that this clinic is a part of. I’m able to go in and pick up the results and CD 48 hours after scans.The nurse navigator returned my phone call today and said that she will have the oncologist call me. She also had the scheduler at UCSF set up an appointment for me. She gave me a choice of in person or video chat. I would rather in person but choose video chat. It’s an hour drive and I’m having diarrhea and vomiting issues. It’s a full time job to try and stay hydrated. Having access to a nurse navigator is a God send. They didn’t have one 11 years ago.
SeeQ,
I appreciate you sharing your history. It gives me hope.
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I'm so sorry, Kabuki. I would also be frustrated that these different doctors can't share imaging and results if they're part of the same system. I hope you feel better and get the attention and support you need.
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Kabuki, I was sleeping long hours like that in the beginning - it gets better (I still sleep a little extra, but not like that).
Metamucil (psyllium) may help with the big D (read earlier pages in this thread for discussion). It was a real game changer for some. Make sure to space it 2 hours from when you take your meds
The are some who really need a dose reduction - I'm assuming they started you on 150mg, 2x a day with an AI or similar. I stayed at full dosage until after NED, and then the D was worsening (after a long period of improvement). I was never nauseous, but was absolutely NOT interested in food in the beginning. I had to force myself to eat a little when it was time.
I'm glad you have a nurse navigator - that may close the communication gap for you. I hope you get some answers soon. Sending a cyber hug your way.
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Kabuki - I agree with Star2017. What you are saying doesn't sound right at all. I thought starting Verzenio labs should be checked every two weeks for the first month at least and then monthly. I have been on it a year and a half and still get monthly lab draws and visits with my MO. Definitely is odd that your MO hasn't been updated on the PET but you have. It sounds like a horrible system. Even in good ones, things get missed. Unfortunately we need to advocate for ourselves or get help. Is there a navigator or a family/friend that can help you with any of this?
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Emac877,
I read on the Lilli site that labs should be done every 2 weeks for the first 2 months and every month thereafter.
I am not scheduled for labs until September 7 after the Faslodex injection. There is no scheduled oncologist appointment.
I see my GP tomorrow morning and will speak to him about it. They have grossly deviated from the standard of care on the labs and this can have serious repercussions. Verzenio can have serious side effects and patients need to be closely monitored.
This is the kind of negligence that made me leave them 11 years ago. I went to PMC in San Francisco and was well looked after. My stress level was through the roof. My oncologist at PMC has now retired. The level of caring and competence between the office staff at both clinics was night and day.
I’m going to call the nurse navigator this morning and try to get an appointment. I need answers
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Kabuki, Is there another practice you can go to? Are you able to go back to PMC?
I know how daunting it is when your MO retires. Mine just retired last year, and it took me a little time to feel comfortable with the new MO. However, she is very thorough and responsive. We are in an area with a lot of medical options, so I would switch if I noticed that kind of neglect you have experienced. Do you have options close by?
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Star2017,
Unfortunately, I don’t have the same insurance so PMC is out. The only other options near me are switching to Kaiser or another insurance plan. I have an HMO. If I switch plans, I can no longer see my GP or cardiologist who are both good.
I don’t know if my plan would let me go to UCSF.
I left a message on the nurse navigator’s voicemail that I want an appointment with the oncologist. She’s pretty good about getting back to me.I plan to have a very candid talk with him and my GP tomorrow. Verzenio is a very common medication in cancer clinics. There is no excuse to screw up labs like this.
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I agree, Kabuki. I hope you get the care you deserve.
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Kabuki - I agree, that sounds negligent and there's no reason for it. My oncologist retired this month and I was heartbroken because she is wonderful. The clinic I go to has another very good competent oncologist I will be transferring to but it will take a bit to be comfortable and the anxiety over it is very real. I hear a lot of good things about UCSF. I hope you are able to go there. Insurance is such an albatross around our necks. I am in hopes your navigator can help. I would agree, Verzenio is one that you should be closely monitored on. I can't imagine a competent practitioner not seeing you before September if you are just starting Verzenio.
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Husband 11,
I received my order of Enobosarm from Chemyo. I am also on Verzenio+Exemesthane. When your wife started on Enobosarm, did you stop the Exemesthane? Also wondering how to figure out the dosing. The bottle says 25mg/ml but that can't be correct since 25mg=.025 ml. The bottle is 50ml. Your wife is on 9mg so that's .009 ml? Do you use a smaller than normal syringe to dose such a small amount?
Thanks for your help with this.
Hugs, Susan
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Susan,
My wife continues to take the aromatase inhibitor as prescribed.
The 25 mg/ml refers to the concentration of the enobosarm in the carrier liquid. It is not pure enobosarm, but watered down such that each ml of the liquid contains 25mg of the active ingredient.
Our enobosarm is 30 mg/ml, so she takes 0.3ml daily. (0.3ml x 30mg/ml =9mg). Yours, being 25mg/ml, you would need to take 0.36 ml daily. (0.36ml x 25mg/ml= 9mg) So a little over 1/3 of an ml or cc is what you want. Does it have markings on the dropper for fractions of an ml? If not, I would get a 1ml insulin syringe, as those have good fine markings.
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Husband11,
Thanks for your prompt response! Great explanation.
My syringe has .1 ml markings as well as tiny sub-markings for .02 mls so I can measure 0.36 well.
She takes that dosage every day?
Best, Susan
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Yes, she is taking the 9mg every day. She dilutes it in a glass of water as it tastes funny taken straight.
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Over the Twenty-Five years that I have had RA, I have, I believe taken most of the drugs created for the disease. All have resulted in normal side effects or contraindications. World Herbs Clinic RA FORMULA is definitely the most effective treatment for me and the only one which works. I only used it for two months. Am currently living Pain-free.
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davon67, that's really great to heart that you found something that has helped and continued to work. Can you share a bit more about yourself, and your breast cancer?
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I have been experiencing more fatigue than usual. Am on Letrozole since mid February and 150mg Verzenio twice a day since mid March. My PT scan in mid June showed that many of my bone mets have resolved themselves and my MRI showed that the lesions in my skull were getting smaller. My last blood tests mid June showed that both my CA 15.3 and CEA continued to go down. My next brain MRI is not until mid September. My MO says that fatigue is not unusual and is going to talk to me about decreasing the dosage. Am having mixed feelings about doing so. Want to continue seeing decreases n both my makers and lesions.
I know everyone reacts differently but am wondering if anyone has any experience with decreasing their dosage and having their makers go up? Is anyone taking one dosage in the am and a different dosage in the pm as prescribed by their MO?
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Goingtobeat this, my wife was experiencing a lot of fatigue from her 150mg 2x daily verzenio. She wanted to try a lower dosage, but her onc was reluctant. We were also warned that if you do down in dosage, you can't go back up. So, knowing that she gets tumor markers taken fairly regularly, we on our own, without telling the Onc, switched her to 2 pills one day and 1 pill the next day. She also started a, shall we say, grey market drug called enobosarm (ostarine). Her tumor markers began to fall further. Between the last two tests her tumor markers fell 30 and 40 percent. Her energy levels are much higher. She can now out walk me. So, I can't say for sure if it was the 25% reduction in overall dosage by taking 3 pills over 2 days instead of 4, or whether it was the enobosarm, but she is experiencing much more energy, and falling tumor markers.
We figured with the 3 pills over 2 days instead of 4, we could always go back up to 4 pills, if her tumor markers started to rise.
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Husband, Very interesting idea to add in Enobosarm and see what happens to tumor markers, and especially encouraging that it may actually be helping! I am not sure if my cancer subtype would respond to Enobosarm, but have been thinking it would be great to have a bit of bone and muscle help after all these years of anti-estrogens...
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It would be impossible to credibly state that it is the enobosarm causing the recent drop in tumor markers, and her increased energy, but it certainly seems to have done no harm, and it might be responsible, and having her wear me out on evening walks is quite the pleasant surprise. She says she feels so much better now. She got up this morning and went for a bike ride! Went out in the garden and picked peas and tomatoes.
I try to evaluate speculative therapies on the basis of:
1. Evidence of benefit;
2. Absence of risk of harm; and
3. Cost.
If it's cheap, and doesn't exhibit risk of harm, then it doesn't have to have a lot of evidence of benefit. But if it is expensive, or worse, risky, there needs to be a lot of evidence of benefit. The enobosarm isn't cheap, but it does have a very low risk of harm, and has prospect of benefit in terms of both the cancer, and strengthening the body. It is also good that the effective dose is fairly low.
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Husband, Plus she can always decide to drop it if any problems develop. The key is feeling better, more energy and maybe doing your body some good, in addition to beating back the cancer. The Enobosarm, as you know, is activating AR so it can counteract the ER signaling in the cancer, but in addition doing a bunch of other stuff for bone and muscle. Like endocrine therapy, I don't suppose you would want to take it with chemo, so if we want to try it, its best done at some early stage point, or in-between treatments... I hope they do a gazillion trials on this so we know what combinations work best for it.. Thrilled to hear she is feeling so good, that is supposed to be the goal here
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I did something similar, but for my dog- she developed a rare anal cancer, aggressive, surgery couldn't get it all. It came back 16 mos later, they said no point to do chemo, it would just make her sick and she wouldn't get more than a couple months benefit. She was panting like crazy all the time from lung mets.
There was big discussion here at the time about the anti-cancer activity of Fenbendazole, a dog dewormer that has a strong chemo activity when tested on cultured cancer cells, so we decided to give her that. Had to mix it in butter and then cream cheese to hide the smell. Scans were prohibitively expensive, so we just decided to treat symptoms- after giving it to her for several months, the difficulty breathing went away. We took her off the drug, a few months later trouble breathing came back again, so we did quite a few months of the drug. She has a visible tumor on her tail but her breathing again became fine. Because she is getting older and somewhat frail, in March 2020 I decided no more chemo, let "nature take its course".
Well, that hasn't happened! She's here with me right now, breathing is fine- we actually recently took her back in for a vet visit, they had assumed she'd died. They gave us an appetite stimulant since she's lost quite a bit of weight, and suggested we go back on the Fenbendazole since she's been off more than a year! Well, she'll be 14 in Nov (was just 10 when first diagnosed!), and having lots of other old-lady problems, so I don't think I will bother her with Fenbendazole- nevertheless at this point I think she will die of old age, nothing to do with that tumor on her tail... Very happy to have had her with us the past two years..
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That's great about your dog and the fenbendazole. Lots of people trying it. I know some of us on here tried it, but didn't get any results with breast cancer.
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For all those interested in how long on Verzenio and previous CDK4/6 inhibitor, I was on Ibrance/letrozole for 27 months, and switched to Verzenio and Faslodex in January 2021. No problem with insurance re switch. My tumor markers had been steadily rising for about 9 months, and I had increasing stranding and nodularity of the omentum concerning for peritoneal carcinomatosis when my Onc decided to switch. He said that Verzenio is quite different from Ibrance, targets the CDK4 much more than does Ibrance, hence a new treatment. So far, scans show no progression from September 2019, and maybe a slight improvement in size of nodules in my stomach. Tumor markers continued to rise slowly after some fluctuation after switch. I am in Chicago for several months and seeing a new onc at Northwestern, who said they don’t do tumor markers, just looks at scans regularly for treatment purposes. I feel better on the Verzenio/Faslodex though more tired. On both CDK4/6 inhibitors I have to be careful what I eat because of stomach pain and gas, which I think is all due to the treatments.
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Hi all,
I'm on day 3 of Verzenio, and it's going well for the most part. Did any of you experienced acne-like break outs on your face? This is pretty unusual for me, and I was wondering if it could be the Verzenio.
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I am starting on Verzenio sometime soon (150mg with letrozole.....V is ordered, but I suspect insurance and setting things up with a specialty pharmacy is holding things up). I am trying to curb my worries about SEs and not borrow trouble. However, in two weeks I will be teaching university classes three days a week. If and probably when the Big D hits, I am kind of worried about what this will mean. Fortunately I set up online teaching for this term last Spring when I was in the midst of diagnosis and didn't know what was coming in the future. Now I'm switching from Ibrance, which tanked my neutrophils/wbc on every dose. I am wondering....can I take imodium (reluctant...didn't realize it's actually a mild opioid, a class of drug i've been trying to avoid) or a some natural version of psyllium husk powder (not sure about the aspertame in Metamucil) prophylactically to avoid problems in the middle of a 90 minute to 2-hour class session??? Suggestions from folks with experience on Verzenio would be much appreciated.
Edited to add....I have been very grateful for reading the experiences on this thread already. Grateful for all of you who have shared your experiences already....which is how I know about psyllium as a possible control for SEs.
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Hi Emac
Sorry for late response.
I was on Faslodex for 6 months then we added Verzinio, the combination lasted 2 years. I was on the lowest dose possible 50mg as I was unable to tolerate a higher dose. So I got a good run with it. Hope it continues to work well for you too xx
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prairiesea -- I asked the same question about prophylactic use of Immodium, and another poster recommended waiting to see how I react to Verzenio. I'm on day 4, and while there has been some stomach discomfort, I have not had to run to the bathroom suddenly or more frequently. I was very nervous, but the side effects haven't been bad for me so far. I'm a teacher too, so I understand your concern. I hope starting Verzenio goes smoothly for you.
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