Abemaciclib Verzenio for Stage IV
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Threetree, I'm on the middle dose (100 mg, 2x/day), and when I started, like you, I took only the nighttime dose. I think its the most critical, because for MBC the vast majority of metastases happen in the nighttime. When I was having too much GI upset/cramping, I skipped the morning dose, or more often, put the morning dose off until noon or early afternoon, just to be sure I was handling it OK. I figured if anything I was just slightly increasing the overall dose in my body for the night shift. I haven't had to do this with other drugs but V is quite strong. I take 2x immodium as needed, which is pretty much every other day. On this dose I don't feel any fatigue, but do get a bumpy itchy rash on my arms if I am out in the sun, so if you notice itching on arms or scalp or exposed skin, see if staying out of the sun helps it. It completely went away when I stopped gardening, so now I garden wearing long-sleeved shirts. Even with the cramping, I prefer V to Ibrance, which gave me more fatigue and then I had to stop because it also gave me foot neuropathy. I take Vit D and B12 supplements, because Verzenio significantly depletes these two vitamins. For me this treatment is quite tolerable now that my body had a few months to adjust, however no way I would move to the high dose..
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Cure-ious - Thanks so much for the detailed info on your experience with Verzenio, and the article. It's very helpful and makes me feel like I'm not alone and give me some more food for thought too. I have decided to skip the morning dose today, because I just don't feel so great and think a break might help. I think it would be better to adjust to the full dose gradually rather than so quickly. I might wind up needing a bit less like you, but I thought I ought to give it my best shot and at least try the full dose.
I too have heard that breast cancer spreads at night - especially bone mets. Can't find the article I saw about that, but this one about dim light at night encouraging spread also is related. Apparently all it takes is as much as an indicator light on a radio or something. I live in an apartment in an urban area and even if I close my blinds at night, I can't shut out all the light - have no energy to look into things like hanging dark curtains. I'm wondering if a sleep mask would do the same thing. Somewhere in the info connected to the article below, they mention that it is "lytic" spread that occurs and that is just what they found in my bones, ribs, and sternum, i.e. lytic lesions. I hate to think I could die because I haven't been sleeping in a pitch black room.
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Threetree, I started at 150 2x a day but reduced to 100 because of extreme fatigue after three months. It is very tolerable for me at that dosage. However, I am in the hospital today with possible heart failure. We do not know whether it is the Verzenio or an accumulation of 7 years on these meds. It also explains why I now need oxygen. But I hope I can remain on Verzenio as it works well for me keeping me NEAD.
Hope you get it figured out.
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Hi @threetree,
We are so sorry that you are experiencing so much pain. This sounds difficult to live with on a daily basis, coupled with the weakness and other side effects. Have you tried speaking to your team to see if they suggest anything to reduce or manage the side effects? It is likely the Faslodex that is causing the bone pain, as it that is one of the side effects. Our article on managing different types of pain has a few recommendations for managing bone and joint pain, but we think first and foremost your oncology team might have some ideas, such as reducing the dosage. As some have shared above, they have had their dosage reduced and this led to the treatment being much more manageable and they've been able to maintain their NEAD (No Evidence of Active Disease) status while having improved quality of life.
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Intolight - I am so sorry to hear of your current situation. I was just talking to my sister in law yesterday, who had just gotten home from 5 days in the hospital due to heart failure. They are wondering if her heart and lung problems aren't from all the cancer treatments she got in the1970's for Hodgkins. Totally different time and drug/radiation regimen, but these treatments are really sometimes just about as bad as the disease - sometimes worse. It's just a case of "pick your poison". I hope you can get this figured out and that you feel better real soon.
Re the Verzenio, I am reading on here how so many have gone down to 100 mgX2 and then do fine. I actually think I could probably tolerate that, but don't know what the oncologist would think. She's real hard core about set standard doses, and I'm afraid she might think if you can't tolerate the 150, then maybe you just need to move to another drug. That first week when I only took the evening dose, I was fine, and I do think I could handle more, just maybe not this much more. I'd like to stick with this if I can.
Overall, it looks like you've had some relatively good luck with all these meds for a lot of years. That's very encouraging to see, and again, I really hope you get this figured out in a positive way. They got my sister in law all patched up and she sounded better than ever when I talked to her yesterday, so I've got my fingers crossed for you too! Good, good luck!
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@threetree, oftentimes oncologists will start at the highest dosage to see how well someone can tolerate the treatment, and then adjust from there. If you do need to advocate for yourself, reaching out to the oncology social worker or nurse navigator if your oncologist seems resistant to your desire to lower the dose can be helpful. At the end of the day, your quality of life is still important and your oncologist needs to take that into consideration. That said, you might also be surprised if you bring it up to her. It certainly can't hurt to open up the conversation and see what can be done to alleviate or manage these side effects better. I think unless the Verzenio is showing progression while you're on it, she will want to stay with this current treatment before moving onto another line—and adjusting the dosage allows that to be feasible, so there is some incentive for her to work with you on this.
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threetree,
When I was on Verzenio, my MO told me she would followed the drug published protocols for Dose Modification for Grade 1, 2, 3, 4 Adverse Reactions. I knew what these protocols were as they were included in the information that came with the drug. Therefore I thought that was the only basis for any dose change she might consider. It was only after reading comments on BCO that I started to learned many women simply speak up based on symptoms and quality of life issues to ask for dose changes and their MOs are often receptive. Based on my experience and as we've shared privately, developing an effective provider/patient relationship can sometimes be difficult to figure out. I encourage you to let your MO know what your concerns are and ask her to explain the rationale for her decisions. One thing I've gradually learned is that my MO likes to give some symptoms 7-10 days, to see if they resolve (or call again if they get worse), before making changes or ordering more tests. This has helped me know that I've been heard and there's a "plan" of sorts in place.
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Hi Wendy - Thanks as always for the pointers. I'm going to read my literature that came with the drug a little more closely. I have an appointment on Wed, but it is for a blood draw, fulvestrant shot, and then a follow-up with the pharmacist (re Verzenio) after the blood draw results come in. The oncologist wont' be there; just the nurse and pharmacist. I'm not scheduled to see the oncologist again until the end of the month for a follow up about all these things the last few weeks. Sometimes though, I think the pharmacists know more about drugs than the doctors and that the doctors should defer to them, but it's the other way around of course. I've declined to take the morning dose again today, as when I woke up, I was just so tired and wiped out that I could only be up for about 15 minutes then had to sit up in bed for 15 minutes, then repeat and repeat. I'm a little better now, but am still very tired, wanting to take a shower, but not sure I have the energy. That's my big goal for today, just a shower. I'm going to see how I feel after skipping 2 morning doses now. I just think I need a lower dose. It seemed fine when I just took the evening dose, and I was sure at that point that I could handle more. I guess just how much more is the issue. I do want to give this a good try.
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Threetree, I just spent the last three days in the hospital with extreme fatigue and pain. I can barely walk. They ran every test including an ECG of my heart and found nothing wrong.. they also gave me antibiotics for a UTI but there is no infection. The doctor sent me home today and told me to exercise more...grrr! I think it may be the Verzenio. When I first started on 150mg I got extreme fatigue. We reduced to 100mg and I have been doing well on this. But I suspect it might be the Verzenio again. I was supposed to see my oncologist this afternoon but insurance won't pay for a hospital and Dr office visit the same day. So it was moved to Friday. I plan on not taking Verzenio until I see her. If I improve we will talk... the problem is it works very well for me and I don't want to stop it as IV chemo is next. Meanwhile I am weak and miserable. I'll keep you all informed.
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Oh, BTW, I am only slightly overweight at 140 lbs. I don't understand this doc. He was great until this morning.
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Intolight - So very glad to hear that you do not have heart failure, especially. You know I've had times on just Letrozole (that I no longer take) where I felt that something was terribly wrong and I just didn't feel good at all. I would go to the ER and they would find nothing wrong. I've read stories from other people on this board who've done that too. They just feel like something is terribly off, but when they go get checked out, they are fine, they just feel horrible. These drugs do very strange things, indeed. I totally understand you not taking your Verzenio until you see the oncologist. I'm going to skip at least tonight's dose too, so I can see if I don't have more energy by the time of my appt on Wed. (no onc at that time). Then I will at least know that it's the Verzenio causing this wiped out feeling. I think that like so many others on here, I might do better with 100 x 2. I don't want to give this up, as so many have done so well with it. I've barely given it a try; just about 2 weeks only. I want to keep going, but I think 150 X 2 is probably just too much. I completely understand you not wanting to stop. I'm also sorry that even though home, you are still not feeling all that well. I hope you get it all worked out soon.
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Threetree - I can empathize with the general feeling of unwell and the bone pain. For the last 3.5 years I was on Verzenio 150/BID and Faslodex. I didn't get the diarrhea that everyone talks about but I did have intermittent GI issues including cramping and bloating, particularly in the beginning. Mostly I had a lack of energy and severe stiffness. As you mention, that can be caused by Faslodex also and I have found the combo of these two to generally make me feel like I have aged 20 years in a span of 3. I was going to say what the Mods said so well about advocating for yourself. My MO was very hesitant to drop my dosing and we have been discussing this for the last 6 months and the sticking point for me was that I have been stable on this as my first line of treatment so there was a fear in me of rocking that boat. I finally just stated that I couldn't keep doing this and he finally agreed to lower the dose as my last scans and labs continue to be stable. I've been on the 100/BID with the faslodex for about a month and I think it helps some with my energy, not at all with my pain. That may be just me.
I do sometimes still skip doses and that does help. I have worried about the heart and lung issues. I find myself in the morning having sonorous wheezes and feeling like I have fluid in my lungs. It resolves being upright and I do cough in the mornings especially. I also don't have great endurance. That flagged in my head as early signs of heart failure but all my labs and vitals are stable so I try not to be too alarmist. I am overweight by about 60 pounds and out of shape so I'm sure that's part of it but I always give "the look" to docs who write off symptoms wholly as a lack of exercise. Does it help, yes, but it's not the end all be all of cures.
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Emac877 - Can't tell you how much I appreciate all that you have written above. Wow, it sounds so similar to what I've been going through. I too have not had the diarrhea problem that most describe (knock on wood that I'm not speaking too soon), but have had some definite GI disturbance, gas pains, and cramps, etc. Yes, lack of energy and stiffness! I get especially worried about the stiffness, because of the spine mets. Every time I get things like stiffness or tingling I get super worried that it's a spinal cord problem from the mets. So far none of the doctors have been all that concerned about that aspect, and like you my vitals all seem to stay good, so I guess that's a positive, but I still feel just awful and worry about long term side effects. Since I've only been doing this a couple of weeks now, I'd like to give the full dose a better chance. I'll see how it goes, but I won't hesitate to ask the onc about a dose reduction if it all turns out to be too much - so far it's looking like it is. It's so soon into this for me, that I don't even know if I will respond yet. They say it takes 2-4 months for any sign that it's helping to show on scans, so I won't know for awhile yet.
I have a "crunchy" or "croupy" sound in my chest every morning when I wake up and am still lying flat in bed. When I get up I start coughing and it is productive. So far I have chalked it up to overnight post nasal drip that I get and that is now much worse with spring allergy season. Now you've got me wondering more if it couldn't be my lungs. I had worried about that, but pretty much convinced myself it was the "morning head drain" from the post nasal drip, that I do get from time to time. Now I'm wondering again, although I have been getting a better handle on the nasal problem the last couple of days, and things aren't as bad as they were re the morning cough. It's still definitely there though. I'd also wondered if that "crackling" sound wasn't just my fractured (and crumbled?) sternum as I breath in when I wake up. I guess I'll learn more as things move along.
I'm so glad I skipped doses yesterday the day before. I do have more energy and I think less pain, so far. The pain is still there, but not as intense, but that could change as I move around more this morning. I have an all day continuing ed Zoom training today and without having skipped those doses, I couldn't have done it. When I got up yesterday morning I could only sit here in this chair for about 15 minutes without having to go back to bed. I improved all day yesterday by not taking the morning dose, and I decided to skip the evening dose also, and here I am now looking able to make it through this thing today. I'll get back to the evening dose when this is all over.
The lack of energy has caused me to stop walking recently too - and that's the one "exercise" thing I like to do and it has helped me keep my weight down. When I was originally diagnosed in 2018 my BMI had me on the cusp between "overweight" and "obese". All these treatments caused me to lose some of my appetite and to cut out wine and cheese and crackers in the evening. I also started walking regularly and my BMI now has me on the cusp between "normal weight" and "overweight". Beginning to wonder if I'll ever be solidly in "normal". Oh well. I just don't want to go up again. I'm happy to stay on this current cusp if it means I'll never gain any more, but with this low energy from the faslodex and Verzenio, I'm worrying about putting on weight again too.
Emac, I really hope that the reduction your are getting to 100 X 2 goes well and helps you feel much better. So many on here say that it does. Please keep us posted about how that goes. Hopefully you will both feel better and not have as much toxicity in your system.
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What is the typical AI used with Verzenio? I've been on V since Dec 1st, with letrozole (I was previously taking it 5-1/2 years when I was on Ibrance). I have a lot of weakness in my legs, I wouldn't call it pain, but it's annoying. Stairs are a challenge. Then my feet always hurt. I'm pretty sure that's arthritis (my grandma used to say her feet felt like bricks, and that's what mine feel like - like they don't want to bend anymore, if that makes any sense), but how to know? Also, the muscles just above my knees ache in the mornings. Geez, I'm full of complaints, aren't I? But I don't know how to describe what I'm feeling well enough to look up whether or not they're symptoms! Someone on a facebook page I'm on mentioned that Letrozole causes all kinds of leg issues, and was surprised that my oncologist kept me on the L because "that's not usually used with Verzenio", or for such a long time (almost six years now).
I'll be seeing my oncologist in a few weeks, and I hate to bother her with such vague symptoms in the meantime, so I haven't written to her about it. My husband recalls hearing her say (back when I started the Verzenio) that she was hearing that a typical V-accompanying AI, that comes in shot form, would soon be available in a pill form. I don't remember hearing that, but he listens better than I do, LOL. Does anyone use a different oral AI than Letrozole, and recommend it? I'm just grasping at straws here.
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Ciaci, there are a couple of issues here I can address. First, I don't know about "typical" AL but I was put on Faslodex shots when I started Verzenio. I hate the shots, but they work well. My oncologist took my off letrozole because I had been on it for six years and was beginning to have slight progression. That was when we switched…
Second, lately I have had extreme weakness in my legs and arms with pain that sound like yours. It feels like I have run a marathon (not that I know what that would feel like!) The pain is odd as it hurts after I move then fades away. My legs remain tender to touch for a bit. Add extreme stomach pain plus fever and it sent me to the hospital for three days over mother's day. They ran all sorts of tests and could not find a cause for the weakness pain, but I received antibiotics for a stubborn UTI. They ended up giving up and sent me home and told me to exercise more. It was a "cop out" remark and made me angry. Early the Tuesday morning I passed out after getting up to use the bathroom and returned to the ER with more pain fearing I broke something. But all was the same and I was sent home without being admitted. I saw my oncologist yesterday who was not happy with the ER remarks. She sent me for a blood transfusion because my numbers were off and she said I was too pale, and she took me off Verzenio even though I have been NEAD for six months. We are watching closely to see if that is the culprit. In maintenance I will remain on Faslodex shots only. After a few days of discomfort I do find the rest of the month on the shots.
I am happy to be off "V" for a while as my out-of-state kids and grandkids will be here in a few weeks. Hopefully I will have extra energy so I can enjoy their visit.
Take care. I will be following to see if you or anyone else comes up with a solution for this weakness pain.
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Ciaci and Intolight - I don't know that I have much to offer here, but I took Letrozole alone for about 3 years, before I progressed to now stage 4. During that time, I had not infrequent leg heaviness, and tingling. My understanding is that it is the estrogen deprivation that causes those things. Estrogen is way more important, and does far more things in our bodies, than most of us have ever been aware of.
I started fulvestrant a month ago and the first set of shots didn't have me feeling too bad. By the second round of shots, I felt a little worse for a couple days after the shots, but then I also started to add Verzenio prescribed at 150 mg x2 per day. For the first week I only took the Verzenio at night and that went fine, but then tried to take the morning doses too after that. Well, after about 3 days of both doses on top of being in the middle of the faslodex "loading dose" phase, I started to experience more leg stiffness and sometimes pain, and also more tingling and numbness. I got so wiped out, I couldn't do anything much at all and was going to bed for awhile frequently. I cut out the daytime Verzenio for a few days, and then even the night dose for a couple of days, because I just wanted to have enough energy to take a shower and go to the store. It helped quite a bit and I got those tasks completed, but then about mid morning last Tuesday I was just overcome with fatigue, leg stiffness/weakness, and tingling all over again, along with a lot of back pain, even though I hadn't had the Verzenio for a couple of days. I'm not crazy about my oncologist, so I went to the PCP's office and saw an NP. One of the doctors participated also. I told them I didn't know if it was the drugs or my spine mets and if I shouldn't go to the ER before I became paralyzed or something. They decided I wasn't on the verge of paralysis and could avoid the ER, but they too could not really tell just what was causing what, but were leaning towards the drugs being the culprit (my vitals have all been fine). On Wednesday, I went and got labs (which were all normal) and the final "loading dose" of faslodex. The next day, I was just about dead (I purposely did not take the Verzenio at that time). I was in bed most of the day with killer back pain, fatigue, and what seems like peripheral neuropathy in my legs. More stiffness, weakness, and tingling - but way more than before. I chalked most of those symptoms up to the fulvestrant and the high level in my system from that first month of loading doses - each successive loading had me successively more tired the next couple of days. The next day (yesterday) was better, and I even got out for a walk, but my legs were numb and tingly the whole way - much more so than usual. Again, it is my understanding that it is the anti estrogen drugs that do this, and since I'd had a doozy of month getting loaded up with fulvestrant, I am still thinking it was that drug and not the Verzenio. I'm a little better again today, and resumed the Verzenio last night. I still have leg problems, and I still continue to chalk that up to the fulvestrant and estrogen deprivation, more than the Verzenio. Now that I have a full month before the next fulvestrant shots, I'm going to see if the weakness and tingling/numbness don't smooth out and calm down a bit.
After all that rambling, my main point is that I think the Verzenio causes the fatigue and some of the weakness, but the fulvestrant or AI causes the tingling and the other part of the leg weakness.
I am also very sorry to read about both of your situations! Ciaci, I know what you mean about walking being the exercise you like to do and how bad it is have something interfere with that. Intolight - wow, what an ordeal you went through. Can't believe the ER didn't see your blood count numbers and become concerned. So often all these medical places just seem to want to pawn you off onto another one, e.g. ER to PCP, PCP to oncologist, etc. It seems to be what they do when they can't figure it out. The problem is that sometimes none of them ever really know what's going on with you and they start with educated guessing. Hope both of you get this figured out and feel better real soon!
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My wife's oncologist thinks that some times, one AI can be better than another. She started on palbo and letrozole, and then had continued success with abemaciclib / verzenio and exemestane. Not sure whether it was the verzenio, or the exemestane that made that combo work better for her. In terms of reduction in estrogen, most of the AI's rate about the same. Something like 95-97% reduction in estrogen levels.
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I do wonder about returning to an AI after early failure. It seems I have heard more MOs go back to faslodex than repeat an AI even if you don't have an ESR1 mutation. any data about this? Does it make any sense to try a different AI if you do go back to one?
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Threetree, thanks for your thoughts. I am only slightly better today—recovery is slow. Friday is my monthly faslodex shots and every-three months Zometa infusion. I did ok on just Fulvestrant before and last month had almost no side effects from it at all. Zometa causes me no issues at all. I have been on it the full seven years. I have been on letrozole with Ibrance and exemestane with affinitor so faslodex is my third Al. Since my cancer has been stable for almost a year the plan is to just stay on faslodex until something changes. I am fine with that. I feel battered enough right now. I am still battling Medicare for a mini-oxygen concentrator so I can get out more since it appears I won't be able to lose the oxygen. That is what I get for living at 7200 ft. There are times I do miss San Diego!
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That's what my wife did, and got over an additional year out of it. She went from palbo and letrozole to verzenio and exemestane.
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Thanks Husband11. I am thinking that with my next treatment I want to try to cycle back to an AI and verzenio. I don't think my MO will be too happy about that- but, I think it has a better chance than the old standard chemos randomly run through that have a 16% chance and maybe less in ILC bone only- if that is what I remain.
How is the return to Xeloda going for your wife?
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In terms of controlling the cancer, we are not sure yet. She is in her 3rd cycle of 21 days duration, that is 14 on then 7 off. The darn lab forgot to do her tumor markers on her second cycle blood test, so we don't have any information to go off. Her liver values, which weren't terrible, but were just ouside normal range, are slightly lower. But her ascites is bad, getting drained twice a week. Her cough, of unknown origin, is killing her quality of life. It leaves her so exhausted. Her Onc has no desire in treating it. Her GP has had her on several cycles of antibiotics. The imaging shows one of her lungs is clearer now, but some nights it keeps her up all night, coughing. If she does any physical activity, sometimes even a walk, she gets into a coughing fit. It seems to stem from a viral infection she had, that was followed up by covid. That was 8 months ago. She is at her wits end. Luckily, she will finally see a respiratory specialist soon.
All stomach issues have resolved since quitting the verzenio. It did work for her for a year or so, but it gave her endless stomach issues, nausea, gas, that she could never get under control. With the rising tumor markers, it was time to say goodby to verzenio.
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Husband11- I am glad that she will see a respiratory therapist soon, - that sounds miserable! and exhausting. I am glad that the stomach issues are better for her. starting a new treatment seems to have a rough patch the first few cycles.
would your Oncologist consider 7/7 schedule? it seems to have a better side effect profile. I did that after about 6 months and it was much better- it is a common schedule for many hospitals and seems to be an east coast phenomenon in the US (I live on west coast so it was a struggle for me to convince my MO). There is evidence that after about day 8 in the cycle the side effects start to climb and the anticancer effects of the drug don't. there is data with colon cancer and a little with breast cancer.
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NKB, I don't want to bring it up with her oncologist. She is young, and very by the book. My wife will probably just switch to 7 on 7 off on her own, without telling. That might cause some issues as blood tests are being ordered based on a 21 day cycle, but on the other hand, nothing special may show up on the blood test if its taken right after 7 days on, and not after 7 days off. When she was on xeloda previously, she eventually switched to 7 on 7 off, and got good results. For my wife at least, the biggest problem with xeloda is being prescribed too much, and then after the damage is done, scaling back the dosage. They aren't going to fool us again with that tactic.
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Husband11- my ANC was low on 14/7 and my doctor wanted to change to 14/14- I was afraid to be off the drug that long and her thought was I would have to go to the lab too often (10 min away for me) once I changed to 7/7 my ANC was never a problem again.
sounds like you know all about this and if all starts to go well - you know how to implement 7/7 schedule.
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Hello all - Have any of you had trouble with sudden low stamina, tiredness, etc? I've just been taking this now for about 3 weeks (150 mg X 2 a day). I had been taking my regular walks that are about 2-3 miles on most days. The day before yesterday, I did about 3 miles, then took the day off yesterday as it was pretty warm. This morning I went back out and could only manage about 1/2 to 2/3 of my normal walk. When I went up a hill I usually take with little trouble, I had to stop several times due to low/no energy. When I got back home I was totally wiped out and sat around for awhile (not unusual after my walk), but I really didn't recover as much as I usually do. Just half an hour ago I went 2 blocks to the post office and back (another very common, no big deal walk for me) and I am exhausted all over again from just that. I don't have a fever and am not short of breath - just totally devoid of energy. Has anyone else experienced anything like this with Verzenio? If so, how long did it last and what were you able to do about it? They're going to stop the elevator service in my apt building for 6-8 weeks starting next week, so they can "rebuild" the elevator that is on its last legs. I was worried about getting up my 3 flights of stairs before, but now I am more than worried. Normally it wouldn't be a major problem for me, but since this Verzenio and fulvestrant business, I think I'm going to have real troubles with no elevator. Also, as others have said on here, walking is my "happy place" and I don't want to have to stop doing it.
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@threetree “Hello all - Have any of you had trouble with sudden low stamina, tiredness, etc? I've just been taking this now for about 3 weeks (150 mg X 2 a day).”
I have been on Verzenio since March 2021. I too started with 150mg twice a day. In October, I started to experience fatigue. My onc suggested I decrease to 100mg since there was a study that found the lower dosage of another of the CDK 4/6 inhibitor was producing the same prognosis as the higher dosage. At the time, I decided to stay on the 150mg till I reached 1 year. The fatigue did continue to get worse and in March 2022 I finally decided to reduce my dosage. My stamina increased and my fatigue went away. My makers are still well within standard range and my scans continue to show no abnormal uptake. 😀
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threetree, I agree with goingtobeatthis. I started at 150 and had to drop to 100 because of extreme fatigue. I have been at that dosage for a year but I am now suddenly extremely fatigued with whole body pain so we stopped it altogether. We are hoping it is more connected to my pneumonia instead of the Verzenio, but we are still waiting for improvement. I do have slight improvement, but not enough to go back on it yet. The pneumonia is about gone so we are going to give it another week. I have been off Verzenio since May 13th, almost a month. I will let you all know.
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Threetree, I had extreme fatigue at the beginning. It resolved to a reasonable extent over the course of several months. When I reached NED, I requested a dose reduction to help reduce, the other side effects (esp. big D) and had the unexpected bonus of higher energy - and after a few months I noticed my hair was starting to grow in a little thicker again, too.
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Going2beatthis - Thanks so much for commenting. Wow, you went a whole year with your fatigue getting worse. Not sure I can do that, but who knows? I'm supposed to see them on Wednesday for another fulvestrant shot and a blood draw, and I'll be sure to bring up this sudden hard hitting fatigue. Really appreciate too that you mentioned how they assume the lower dose will be OK because another CDK4/6 inhibitor turned out to do that. I have not been able to find any information that does indeed confirm that a 100 mg dose is as effective as the 150. I did see something from ASCO about a month ago that said that women on the lower doses seem to still obtain benefit, but they didn't say if it was equivalent to the 150. I don't think they know. Glad to hear that your fatigue went away (it's encouraging) and that your markers continue to be good. Here's to all of that continuing!
Intolight - So sorry to hear that you are fatigued all over again. From what you've stated here, I would think it's likely the pneumonia too. Also very sorry to hear about that! Yikes. Do they think it was the Verzenio that caused your pneumonia? Please keep us posted on your progress. I'm assuming that otherwise, the 100 dose helped the fatigue you had on 150. Feel better soon!
Seeq - How were you able to function until your fatigue resolved to that "reasonable extent"? If I was able to just lay around the house, it might not be too bad, but I still work some and live alone, so I can only rely on myself. In addition to the fatigue itself, I start sweating and become one big hot flash after just minimal activity - like doing a load of dishes or walking across the street to the post office and back. I swear the last 2 days I've been almost a solid hot flash along with the fatigue. I think the sweating is more related to the fulvestrant, unless the fatigue is putting added strain on my heart. I think fulvestrant can cause tiredness/fatigue also. It's just so hard to know what side effect is what with all these drugs. Really encouraging though to hear that you are better and more energetic on the dose reduction. It's always so nice to see hair growing back or filling out! Mine is still doing nothing but thinning.
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