Abemaciclib Verzenio for Stage IV
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booboo1: thanks for your idea, and your sentiment! yes, i may look into that at some point, but for now, i'll just struggle on, since i would think there are plenty of people within any religious community who require help, given how common cancer and illness are.
i just think that there's a serious glitch in the hospice model, especially for younger people (i am 46). there's a low chance abamaciclib as monotherapy will work for me, but of course, taking it is part of that whole hope package we are constantly encouraged to maintain. denying me services because i am clinging to a slim hope seems unethical to me. i talked to my library volunteer yesterday (a former librarian who brings me library materials i order online. she is about ten years my senior, and developed (or, rather, discovered) ovarian cancer in the year i have known her, so had surgery and now is going through chemo, but insists on keeping up her volunteer work, which is almost funny in an ironic way, since she'll be coming here with tales of neuropathy and neutropenia and new wigs, while other than the breathing (which is of course a huge issue, and almost-completely disabling), i seem and look fine), and here father, a former physician who had cancer in his 70s and eventually died from it, ran into the same issue: he chose to be on a drug-trial medication (partly to help further science) and therefore was denied much-needed hospice until the very, very end. how absurd. at least, he had family; i'm single.
the diarrhea seems to have abated in the last few days. (i still am having painful cramps, though.) I am wondering whether that's because i took myself off cyclophosphamide. maybe the two didn't mix. we'll see; after almost six weeks of mostly-severe diarrhea, i am a bit reluctant to fully trust that this is an improvement not just a reprieve. if i remain diarrhea-free, i may bump myself up to the full monotherapy dose of 200 mg again. for now, i ordered my one-month refill for the reduced 150mg dose, though.
definitely not noticing any improvements yet. rather the opposite: my breathing is so short, i am too afraid to attempt the stairs to the ground floor (and the outside) that i last went down a week ago. standing up or slightly shifting my sitting position or raising an arm leaves me out of breath.
odd symptoms that i don't even want to google anymore, and that a hospice nurse probably could explain (not that i want it explained right now. remember the hope bit!): one warm, one cold hand, for example.
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there is a serious glitch in the hospice model luce, indeed.
hang in there, eye on the horizon.
>Z<
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A new panel discussion of Abemaciclib and causes of resistance to Ibrance... http://www.onclive.com/peer-exchange/systemic-ther...
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Reuters is reporting that the FDA expands approval of abemaciclib.....tried to post URL but can't because I haven't posted in enough discussions.
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I read they expanded it to use with aromatase inhibitors, before it was only approved for use with fulvestant, which is a SERD (selective estrogen receptor downgrader).
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Hi to all of you. I don't post often but read everything you write. I have learned so much from your posts and have gotten advice, support and hope from so many of you. I am constantly in awe of your kindness, generosity and concern for each other.
I am a long time breast cancer patient/survivor. I have written about my cancer journey before on this site, but for those who may not have seen it, this summarizes my story. I was first diagnosed and treated in 1975, then again in 2004 and then in 2013 with MBC in the bones. I was treated for 2 1/2 years with letrozole.
In January of 2017, i was diagnosed with liver lesions and went into the Monarch clinical trial, which was a 3 drug treatment. I wasn't able to tolerate the 3rd drug, LY3023414, but was kept on fulvestrant and a lower dose of abemaciclib, 100 mg, twice a day. As part of the trial I have regulat MRI and CT scans- for the first year every 2 months, now every 3. The last 2 scans showed significant reduction in the lesions, and the great news is that the last scans showed a 100% response to the liver lesions, meaning they are gone!!. At my dr's appt yesterday, there were hugs and kisses all around from my doctor and the clinical nurses!! The lesions are followed and evaluated by a radiologist who prepares a Recist Report ( a response assessmenmt form). My Onc also said that the 3 drug treatment has been approved.
I hope that this info will show that there is hope in the new treatments that have have been developed recently and may also prompt some of you to consider abemaciclib if you have been reluctant to. I have been able to tolerate the side effects without having to change my every day life to do so. (The reduction in dosage of abemaciclib may be one of the reasons) I work part time 2 days a week, and my DH and I just returned from a 14 day cruise. I have been dealing with this disease for 40+ years, and I amy still here!!!
My thoughts are always with of all of you as you stuggle to live your lives as best as you can. I am saddened by the difficulties and disappointments you experience. I am uplifted by your successes and spirits on this difficult journey. Love to all of you.
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I am starting a clinical trial of abemaciclib and immunotherapy on 15 March. I am hoping it will get me back to NED again. Tamoxifen kept it at bay about 10 months, but the cancer is starting to re-surface in a couple areas in my bones and lymph nodes. Tumor markers are also trending upward from a low of 4 back in April 2017 after chemo to 35 in February.
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Thanks MZR! we would appreciate it very much if you would hang out here and continue to share your experience. We have very few people who have been on the drug for any significant period of time. At the moment, we're are mostly comparing diarrhea onset
here on this thread.Welcome working Mom! What trial, what drug! We are very happy to have you here and interested in the specifics of your treatment plan. Please hang around and let us know how you feel on the treatment and how you respond.
>Z<
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I am requesting this treatment.
Here is some info on Faslodex injections that is important, especially for pepople with larger buttocks and muscular area more difficult to get to.
https://voice.ons.org/best-practices-for-im-injection-of-fulvestrant
Large-volume (≥ 3 ml) intramuscular (IM) injections may not be administered often, and oncology nurses can be unfamiliar with best practices. A study found that only 32% of gluteal injections were administered into the desired IM target. This could lead to the drug being administered subcutaneously or near major nerves and blood vessels, potentially decreasing the treatment's efficacy.
Traditionally, nurses were trained to inject large volumes in the dorsogluteal site. Caution should be exercised, however, due to close proximity to the sciatic nerve. The ventrogluteal site is evolving as a safer intramuscular injection site, as it is accessed easily and is distant from major nerves and blood vessels.
In patients with excessive subcutaneous fat, a 90-degree angle should be used to avoid injecting subcutaneously. Identifying bony anatomical landmarks and ensuring proper patient positioning offer a safe and effective means of intramuscular delivery. Rotation of injection sites should be considered with repeated monthly injections.
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I have found that my nurses at MSK are very knowledgeable about how to administer the Faslodex injections. At the beginning of this thread there are very good suggestions as to how to make this more comfortable for you. Important- the shots are warmed before they are administered, use heat packs on the buttocks before getting the shot, keep pressure off the side that is being injected. Yesterday my nurse( who knows exactly how to make this painless) told me to take the pressure off the side which was being injected( even though I thought I was!) and it made a big difference for her to do it easily. At times I have found both sites to be sore for a few days, and I use a heating pad for comfort.
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Thanks for posting mzr119 - it brought a tear to my eye. Sometimes we get very overwhelmed by all the ups and downs that our hope starts to erode. It is wonderful to get an injection of hope from a fellow metster. Very happy to hear that you are still here after 40 years of dealing with this devil and you just got back from a cruise! You made my day!
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That's cool. Maybe it would work for abemaciclib.
Luce - I was thinking about you today. How are you feeling?
>Z<
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zarovka: i meant to research that study a bit further before posting the link, and add a few thoughts, but my ancient laptop kept freezing. would be a cool test, especially for those with bad side effects; there is a lot of suffering in that.
i only had diarrhea one day last week, so that's good. still on reduced dose but may try the full dose again sometime soonish, as i think the cyclophosphamide i was on might have contributed to the diarrhea in combination. (I had never had any problems with CP on its own, though, at the low-dose I was on. well, other than it stopping my periods cold.)
my breathing continues to deteriorate, so it is safe to assume that abemaciclib is not working so far. i can't stand and talk at the same time. or stand and eat something as small as, say, an almond.
started mistletoe injections as my temperature tends to be less than 97 F. yesterday, it was 96.0. Not gotten a reaction yet; will try 5mg tonight. i really dislike injecting myself. i used to do it all the time with vitamin b and later, thymus gland extract from germany, but i am just tired of needles. i hope i'll get a big reaction and won't have to inject for days or weeks.
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-Z-
Will do, thank you! I will post the specifics shortly. I was nervous at first, but am now very optimistic.
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Luce, I am sorry to hear about your breathing. When is your next scan to see if Abemaciclib is working? Are you taking mistletoe for the cancer or the low body temp (or both)?
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Z: for low body temp.
not interested in scans. my breathing will tell me if it kicks in.
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Luce - I am interested in the mistletoe you are taking for low body temperature. I have always had low body temperature and everything I learn in my Chinese medicine accupressure and Quigong classes indicates that low body temperature is not good for health. Mine normally runs 97.7 and when I was feeling bad last week it got down to 96.4 so I am in the hunt for recommendations on how to raise my overall body temperature. Have you had success with misletoe for this in the past ? My regular doctors don’t seem overly concerned about it, just high temps,but I think it’s factor I should be trying to address.
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Maizie, How are you doing? Keep looking for updates from you- hope its all well!
WorkinMom- Hope its working!!
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Hi everyone, I haven't posted in a while but I just wanted to pop in and say hello and give a short update. I am doing pretty well except that the diarrhea (sp) is happening more often with no warning. It happened three times last week and last night my stomach started haveing horrible pain along with the diarrhea. I was crying and praying for it to stop. I relly don't know what to do about it. I wear a large pad everywhere I go just in case it starts to happen because it does happen. Do any of you have any tips on what kind of diet might be helpful? I take the lomotrin when it happens and I also tried taking the immodium ad before work on Monday because of it happening Sunday. I was miserable and am not going to do that again.
The Faslodex shots are leaving these big knots in my butt and I don't think that's right but I don't know what to do about it! I told my husband I will have a butt full of big knots. Yuck.
I'm going to bed so I can go to work tomorrow and I don't have to work this Saturday. Yeah!!!!
Love to everyone, Jenny
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Hi Jenny -
I feel for you. I am on my 9th week of abemaciclib and the diarrhea, stomach pain, and sometimes nausea has mostly been horrible. It will improve for a day or two and give me false hope, but the reality for me is that it always returns and has become a way of life. I also have had the sharp stomach pain several times in the middle of the night. I am taking immodium and lomotil three time a day, and recently added in budesonide, as prescribed by the doc. That has made my days a lot more bearable. But I am still heaving diarrhea at least once a day, and the budesonide has caused more nausea and now heartburn! The fun never ends! As far as food, I am sticking to a bland diet. Oatmeal, bananas, soup, noodles, mashed or baked potatoes.....you get the idea. But my tumor markers have gone down, so I want to stick it out at least until my PET on April 5.
Donna
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Mazie...how are you doing on the trial? Let us know if you feel like it.
xoxo
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Liwi. no change so far yet on mistletoe; my body temp runs from 95.9 to 97.5. i think it's part of the reason i have cancer, and there's no way my body can be healthy or have a functioning immune system with that low a core temp. i have no recommendations, though, alas. (maybe someone else on here is more knowledgable?) mistletoe, which i generally don't have much faith in, is supposed to elevate core temp, though. we'll see.
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Hey. Luce. Thinking of you. Wishing you a pleasant cancer free weekend.
>Z<
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Z: thanks! i just got back from staying in a little stream-side cabin (found on air bnb) nearby for three nights. the terrain was flat, the cabin did not have any stairs, and we could park right next to it, so i was able to go thanks to my friend Heidi, who drove, carried my oxygen equipment (and other stuff) in and out, and cooked. although i can no longer hike, or even walk more than two or three steps before having to stop to catch my breath, it was nice having a different (and very green) view for a few days.
any exciting news on your japanese treatment?
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I am new to the board and will enter my bc history tonight, but wanted to post question right away. I've been on abemaciclib for 9 days in combo with fulvestrant. Were you given directions for loperamide (Imodium) when you began abemaciclib? I was first told by my onc to take 2-4 mg. with first loose stool, then 1 with every loose stool thereafter, up to 6 a day. Then pharmacist specializing in oncology came into room while onc was still in room, and said I should immediately, before diarrhea, start taking 2-4mg. capsules 3 x day for two weeks, then 2-4 mg. capsules 2 x day for 2 weeks, then as needed.
I was overwhelmed with everything and went with last set of directions which were printed out and oncologist did not contradict pharmacist. Was totally constipated first 4 days, quit all Immodium, contacted hospital, was told to do what I'm doing. Lots of water, prunes, prune juice, walks, etc. Now on Day 9, have added in Fiber Con and Miralax, still blocked. Have had some tiny tiny tiny movements. Will contact hospital again.
Were you told anything like this? Thank you
Nanns_R
Diagnosed 2005 Stage IV ER+ her2+ with mets to spine, chest, neck. Have been on herceptin, femara, fulvestrant, aromasin, tamoxifen. Tumors to liver, now her2-. Will put rest in my profile!
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I am back from Japan. I am dealing with some gastric and gall bladder issues which were very severe last weekend. Could be cancer advancing or could be a side effect of responding to treatment. I won't even begin to be able to evaluate for a while. It was a rough week for me. However, I have improved every day since returning so I am not freaking out despite the uncertainty.
I like Heidi. Glad to know you have friends like that. What a great idea, to visit that cabin, have a nice break.
>Z<
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Nanns_R, I have been on abemaciclib as part of a clinical trial for over a yearf. I'm now on Cycle 16. I have had excellent results and 100% response for liver lesions. They have disappeared!!
InitiallyI was advised to take imodium as needed, but was never told to take as much as you were. If i had followed that regimen, I would still be constipated!!. I don't know what your dosage for abemaciclib is, but I started at 150 mg twice a day and then that was reduced to 100 mg twice a day when I had difficulties with the 3rd medication which was dropped from my protocol. I'm on fulvestrant also. i have managed to control any diarrhea with1 imodium when it starts. That has usually been enough to control it. I have rarely had to take more than that for an episode. If I start to feel uncomfortable and want to make sure I'll be ok to go out or to go to work, I will take 1 as a precaution. I have never experienced the "explosive diarrhea" that I was warned about or that others have had to deal with. If i get constipated, I follow the diet you are following. I also take stool softeners when I am having these issues.
Some other information that might be helpful as you go through this regimen:
Heartburn is a very common side effect with this drug. I was taking Nexium every day but just started to wean myself off it as i feel , despite dr's differing opinions, that is has contributed to hair loss.(that's a whole different topic!). I do, though, still have to take something for the heartburn, but just wanted to get off this drug.
Be careful taking substances which may conflict with abemaciclib. Everything that I consider I need to check with my clinical nurse to see if it is safe to take. For example, I wanted to take a pill called "Hairfluence" for hair loss and even though it is touted as a natural remedy, some of the ingredients were in conflict with abemaciclib. I think one was "bamboo extract". It is easy for me to check anything with the clinical nurse but have found that I do not consider anything that I need to take internally. I would check with your dr or contact Lilly directly.
One of the biggest issues I have is that my sense of taste has been affected. That started early on and has gotten a bit better.
Hope this has been helpful If you have any other questions, feel free to ask on this board or PM me. I will be happy to give you any help I can.
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mzr - great information. thanks! Were you on Ibrance or Kisquali previously?
>Z<
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Z- I was on letrozole for 2 1/2 years. After that I was on a clinical trial with a single agent-
gd 0810, a Selective estrogen receptor degrader(SERD) for a year. I came off the trial when there was progression to the liver.
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