Ibrance (Palbociclib)
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Chicagoan, thanks for the offer to show me some yoga moves but I'm in the far west suburbs so probably not close to you but I will definitely check out some calf stretch exercises on YouTube. Most of my exercise consists of a stationary bike and treadmill, both of which are probably contributing to the calf pain and not enough stretching. It's not something I enjoy for some reason. Maybe because it hurts :-)?
Faith
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Regarding the muscle pain, I am really struggling with this. My thighs, hips, back feel very sore, almost like someone beat me! I'm on cycle 23, this has gotten worse in the last couple months. I also work full time but not sitting down, I log my 10,000 steps before 3pm every day. Have appointment with MO at end of month, I did mention this to my primary when I was there for an unrelated thing. She seems to think this may be a cumulative thing from prolonged use of hormonal therapy. New onset of stiffness also. Any tips appreciated
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Lynnwood, I experienced some real discomfort when I was on Femara in 2013-14. It interfered with my life so much that I stopped treatment for a good while. When the bone mets showed up, I decided to give the Ibrance/AI a try but not with Femara. I chose Arimidex. I also started taking Turmeric (sp?) daily from the beginning. So far (knock on wood), I have no discomfort in my joints or tendons as I had before.
You might also think about going to a physical therapist for myofascial release therapy. It may take some calling around to find someone expert at this but well worth it. I had it for some hip/leg discomfort when we first discovered the bone mets and it worked perfectly.
I'm so sorry about your pain but also encouraged that you are in your 23rd cycle. May you get relief and 23 more months, then 23 after that...and on and on!.
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Lynnwood, this may be controversial but I have also decided I will take a break from the Arimidex if I get in terrible shape again. I'm a real believer in quality of life and I think I will consider taking a few months off the daily AI while continuing the Ibrance. It only took 5-6 weeks for the discomfort of the Femara to stop back in 2014.
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Lynnwood, I was wondering if the pain could be from prolonged use of the Letrozole. I have had a couple of massages but they have not helped much. I have started yoga again but too early to tell if that will help.
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My onc says that my tumor markers are meaningless. They were too low to provide any information. Disappointing not to have that as a tool but interesting that that's not all that uncommon. Thanks for the clarification, Z.
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Found out last night that I will be a Nana again in December. This makes number 15 😘. Ibrance do your thing so I am around to enjoy my babies.
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Congratulations, Dianarose!!
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It is weird that some doctors use them and some others don't even look at them. My doctor does use them and he has used terms like they have plummeted and you're doing amazingly well, my blood work has never shown too much to go along with this crazy story. So the blood work never matched someone with my stage. So I have become thee anomaly around their office. I guess it's going to do whatever it's going to do and unfortunately, we were chosen for this ride. I found a scream and rant thread. Oh yeah. I feel that much better. Blessings to all! ~M~
Congrats Dianarose~. You deserve all the blessings that are coming your way. I am so happy for you all.
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My tumor markers have pretty much been spot on. My blood work is usually crazy when my markers are up too. MO says my blood tells her more then the scans do.
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Dianarose~mine does also seem to place a lot of emphasis on the blood work. His reasoning was the blood runs through your whole body, which means everywhere, every organ, if the blood work remains consistent, I am praying his logic will follow with good scan results in may after six months of being on ibrance and anastrazole. I do feel a lot better. As long as I am not having the XGeva shot. That is a rough two days! But other than that I try to get by. The ritilan has been a wonderful addition! But I dont take It every day, I know my body does need rest, I just end up feel pretty yucky if I nap during the day. Around 200 I hit a wall and I am like done! The ritilan helps push me through, which helps me sleep better at night. When I nap I find I'm awake until after midnight.
It's yucky! Have a good day ladies. Always keeping you close in prayer! ~M~
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Micmel- the Xgeva doesn't bother me but the Faslodex does. Worst cold chills ever. I read it can be one of the side effects. Hopefully after the loading doses are done it gets better. I haven't had to nap since I have been off the A/C. I haven't slept well since I started Ibrance. Might have to take something for that soon
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Dianarose~ I also take my ibrance at night with dinner as some do here as well I believe. I also have a pallative care doctor, and she doesn't mess around. I take a 10mg Valium and it relaxes me even if I don't want too, I take it. I also from time to time take a 10mg Percocet to calm my pain levels if it has been an active day. I also take a very low lawn methadone pill .5mg. To even me out before bed. I find I sleep rather well. I'm just a tv watcher and I end up suddenly noticing it's like midnight! I am not afraid to ask for what helps me. No one should! ~M~
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I have had to be off Ibrance for an extra week. Counts too low. I now have vertigo. Never experienced it before. The first episode really scared. Went to the ER at 2AM. Not related to allergies. Anyone experience this.0
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airlinegal, I haven't had actual vertigo but definitely had some dizziness and once I fainted with no warning at all. Scared the s--- out of me and DH but it was just once. I've been trying to get more sodium in my diet as it runs low from all the water I drink. I drink a small glass of tomato juice or V8 everyday and my dizziness is much better. Don't know if that will help with the actual vertigo though.
Faith
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Hi Faith,
Still hoping to be able to officially join this thread (waiting to hear if it will cost me $$$$$). You mention drinking lots of water. Why?
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Airline gal, I experienced vertigo a couple months after I started the ibrance. It was scary and I didn't know what was happening. I spoke to the on call oncologist and explained I could not get off the bed as I would fall from head spinning so much. He said it sounded like vertigo. It lasted for a couple of hours and then started to improve. Though I can get slightly dizzy now, I have never had another episode like that.
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Hello All,
I will be starting Ibrance and Femara this week. It makes me a little sad as I remember Hope when she started this thread. I have a few questions. For those you are taking Ibrance and Femara, do you take them at the same time? I read from some of you that sleeping is an issue and I wonder if dinner time might not be the best time to take it? Any other tips that you suggest? It's nice to see some familiar names.
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Linda~ sorry to see you here, but so nice to meet you. I take my ibrance with dinner. Never an empty stomach. ugh!!!! Horrible. I take my anastrazole an hour after that, so it's not so much at once. I never seem to have issues sleeping,but then again I also take 10mg Valium to calm myself after those big mental battle or physical battles each day we are forced to go through. You're not alone. A lot of knowledge shared and it helps tremendously, to not be all alone. Sending prayers as always ~M~
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Linda, I take mine at dinner also and I take them together. Easier for me that way. I am fortunate in that I dont have any sleeping issues. Welcome!
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Linda - my sleeping issues are probably not from ibrance. they persist whether i am taking it or not. I do take the ibrance with food in the late afternoon.
Welcome.
>Z<
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welcome Linda my big meal is dinner so that's when I take it. Try to have 4-5 hrs up before going to sleep, because I get reflux if I lay down too soon. Take femara in the am with my thyroid med. Drinking lots of water is part of the program, if I don't I get headaches. I was told your urine should be clear.... Hasn't happened very often. Think of flushing out the dead cancer cells via urine. I try to drink 14-16 glasses/day
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also went to er for dizzy spells before knowing my cancer had returned. CT scan/ blood work/ekg normal. Vertigo seems to be the catch- all word for no other symptoms. Dehydration and low O2 will cause dizziness...So drink more water and see if it helps. I'm on my 3rd round of F& I. Few mild side effects. Neutrophils went from 5 to 1.1 after the first round then back to 1.6.
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I think one of the first lines of directions on the Ibrance insert, said to drink 3-4 quarts of water a day and my onc. also told me to drink more water. I think it lessens the side effects and washes dead cells out of our bodies. I take my Ibrance after breakfast as I like a big breakfast and that's my most consistent meal time wise. Also, true confessions here, I like the occasional glass of wine with dinner and I thought it smart not to have both at the same time. It is about quality of life after all and this old Italian likes her vino. I have switched up the timing on letrozole and right now take it after lunch but can't say if it makes any difference when I take it. It still causes lots of issues.
As for sleep problems, I read somewhere and am trying it right now,that 3mg melatonin along with calcium and vit. K2 at bedtime helps insomnia and so far it seems to help quite a bit. Might be worth a try for some of you.
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Hi Lindalou, I take Ibrance100/letrozole together at 9 am with Greek plain yogurt mixed with walnuts and a splash of cherry juice concentrate, plus my coffee! I take my Calcium, Vit D, B complex and Celexa in the evening after dinner. I drink half gallon of water/day to flush toxins, to hydrate (I walk a lot), and also to help my dry mouth. I do rinse with baking soda/water after brushing, followed by Biotine moisturizing mouthwash. I sleep fine..maybe too much. Welcome to Ibranceland. Grateful to Hope for starting this topic.
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Thank you for all of your tips. I appreciate it.
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Does anyone have watery eyes? I've noticed that mine seem to frequently stream for no reason - my DH keep asking me if I'm crying!
I was wondering if this was Ibrance.
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Scwilly - I had watering eyes for about 2 or 3 months. it was awful in the beginning. I had a rash down my right cheek from the streaming tears. I went to the ophthalmologist and she recommended artificial tears which helped and then within a couple of weeks of using them the watering just stopped. For me it went away and it only happens occasionally now usually if it is very cold and windy out. Some other ladies here on the boards still have the watering eyes. Some use the artificial tears routinely. I'm sure they'll chime in. I hope it just stops for you as it did for me.
Cathy
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animalC you have dry eyes my girl!! Had the same thing. Go get rewetting drops for the daytime and the gel restorative drops for sleeping. Works wonders !!!!
~M~
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Hi all, my Onc just blew my mind and I was so surprised I didn't have the presence of mind to prove further.
It was scan follow up visit and my annual visit with him (since I'm doing wel, I see his NP who has been with him for 20 years on a regular basis). He said my sxans look great, my bone spots are all healing, nothing new has shown up. Still isolated in my bones. He said my blood work looks great.
I asked what the next year might look like for me, assuming scans show continued stability...he said we might take me off Ibrance and that would be a great problem to have!!!! WTH? UCLA was one of the original sites and has patients who've been on Ibrance for seven years, so why would he take me off of it if it's working????
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