Ibrance (Palbociclib)
Comments
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Wanted to post for everyone about an interesting experience I had the other day -- this applies to all breast cancer patients, but since I post here the most, thought I'd post it here for you all.
Some number of years ago, my friend's mother, who had had early stage breast cancer, developed a metastasis to her eye. It eventually spread and she passed away (it was ignored for quite a while -- a problem of ignorance as well as distance from her kids). As a matter of course, when I have my annual eye exams with my ophthalmologist, I usually talk with him about this. He says that metastasis to the eye is very, very rare, but that it can occur.
When I mentioned to him that this May I was diagnosed with metastasis to my liver, he decided that he was going to be extra cautious, and I think I had the most thorough eye exam I've ever had. After I was dilated, he looked into my eyes with at least 4 different lenses, in addition to the standard one that's on the swing arm, explaining that sometimes, cancer cells "hide" near floaters, or else hide in the corners of your eyes, and that sometimes they are visible to ophthalmologists with these special lenses. Luckily, he didn't see anything, but our discussion prompted me to sign up for a six month, rather than an annual, eye exam. He said it was my choice, but if I felt more comfortable doing that, he'd be happy to see me.
I am writing about this because his very thorough exam reminded me that all of our doctors should know what's going on with us. This guy is one of the best doctors whom I've ever dealt with, and I really appreciated his thoroughness in examining me the other day.
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BevJen- very interesting! Thanks for sharing. Question- I don’t have regular eye exams. No glasses. Is this something we should be doing now with MBC?
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I mean, that's up to you, really. I don't think it would hurt. But I'd head for an ophthalmologist (who is an MD) rather than to an optometrist, who is not an MD. I might check with my MO about this if you don't get regular eye exams.
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REF: Ibrance causing severe inflammation of the lungs...
Well that's just great......
just great....
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Hi Ladies, I just need your helps. Is abdominal pain & gas common SE of Ibrance. I 'm on 8th cycle & having dull pain at belly button with lot of gas. My scan 2 weeks ago was clear. Thanks in advance for your inputs
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mshar - congrats on your scan
To whomever had questions about eye issues. I have little black dots float in and out of my right eye. I always find that they are there when I am looking for them or stressed. They started right around the time I started ibrance. I went to the optometrist and she didn't find any floaters. She also checked very closely for any malignancies in my eye. She couldn't find anything. She said it could be due to dry eyes. When I first started going to see her, she told me due to my Bc history, she would always do a complete and very thorough check - always dilating my eyes and such.
Nicole - glad those nasty mouth sores are finally healing.
Pat - you have your scans coming up with your MO visit. Keep me posted what you discuss.
Someone else - Jaycee? had a slow lazy uptake on their latest scans... Yay!
Sorry for not posting a lot of recent. Been trying to pop on at least once a week. But when you do, there is a lot to catch up on! Wow! I have been trying to get back into a school groove. Also I am taking on more responsibility at work, now that I know I am going to live for a little longer!
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42young, yes, abdominal gas pain is a common se. In fact, Mine were bad yesterday, but with no fever I just took antacids and walked a bit and it helped, but it took all day. It usually happens at the end of my pill cycle. Usually if it hurts bad when I wake up in the morning, I figure it is gas and don't panic. Since I have been on IL for over three years I have learned not to panic. My scans sometimes show possible inflammation in the stomach area but that is all they ever say it is. Always be cautious if you have a fever with it.
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hi 42! I def get some GI distress such as pain and gas and bloating from Ibrance. It’s really quite amazing gas at times!
My MO suggested taking gas-x but I haven’t. I have no reason why, just pure laziness.
Do you experience relief from the pain once you expel the gas?
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I just finished cycle 5 and it seems at the end of the cycle I'm getting either reflux, or gas. This time was gas. I did have some dull aching in my gut.
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Pat- thanks for the article! Although using Ibrance to prevent hair loss sounds completely counter-intuitive, I gather that the plan is to use it topically to arrest the hair follice cells from dividing- chemo gets taken up into all actively dividing cells, and hair is one of those that divides a lot. So the idea is if you arrest the divisions, then the hair follicle cells won't take up the chemo and get killed. Sure, that could work- and could be better than those cold caps (or improve efficiency of cold caps)..
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Ok so I am back on the Ibrance since the mouth sores are gone. 75 MG now.
I need some advice. I usually take Magnesium Oxide to help me "go" if I am consitipated. The Ibrance makes me consitpated but I do not want to take the Mag Oxide because I noticed the last time I took it (I need 3 pills to make me go) my poop was a yellowish color...and just not right. As soon as I didn't take it, it was brown again. SO...I know if I was to have fiber one cereal or maybe bran cereal each morning it would probably make me go but I am trying to avoid Gluten because of inflammation... how bad do you all think 1 bowl of that would be each morning? I use nut milk.
I eat a lot of veggies and have fruit and non dairy yogurt during the day.
I don't know what else to try? Things like miralax never really did much for me either.
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Nicole, here we are on a Saturday night comparing our poop! Mine sounds like yours and the odd color has to be the Ibrance. Raisin Bran fixes the constipation for me but prunes do the same thing. I get lemon-infused ones and they taste almost like candy. Five or six each day for a few days change everything! A handful of mixed nuts also moves things along. Loose as a goose!
Just a little comment for everyone about MBC in the eye. This is not to poo-poo (pardon my pun from Paragraph One) being vigilant about your eyes, but I ran a support center for almost twenty years and met thousands of breast cancer survivors. I also went to other cities, speaking to more thousands. In all that time I only met or heard of one person with mets to the eye. I don't know what the statistics are but what do we say about statistics and us?!
Love from PatGMc
My favorites which I get at Kroger:
https://www.sunsweet.com/store/Lemon-Essence-Pitte...
I also keep these handy:
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hello ladies - i have been taking ibrance 125 mg for about a year along with faslodex and Xgeva.
Recently, I have been feeling very tired and complete lack of energy. And I sleep for 14 hours at a stretch! My bloodwork I think is typical, wbc count low and rbc count borderline low. My MO didn’t offer up any ideas other than to say let’s wait for your scan results which is at the end of the month.
Any ideas or suggestions what I can do to improve my energy levels?
Thanks in advance!
Priya
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Pat,
Thanks for your comments about MBC in the eye. It is indeed a rare event -- even my eye doctor said that. I only brought up that info so that people are aware that BC can metastasize in weird places. Other than my friend's mom, who did in fact have metastasis to the eye, I've never heard of it either. However, being a "weird" metastasizer, I tend to pay attention to the weird places that things can go. On my first go round with metastasis in 2006, I had metastasis to the tip of a small polyp on my cervix. None of my doctors could believe it. My MO did a literature survey and she found reports of only 8 people to whom this had happened. My breast surgeon almost fell off of her chair. And that one was found on a routine gynecological exam.
I tell you all this not to strike fear in your hearts, but since many of us go to the eye doctor anyway, it doesn't hurt to mention our current BC situations. Maybe I'm the only one like this, but because medicine is so compartmentalized now, when Doctor A says "anything new medically?" sometimes I tend to focus on that doc's specialty (e.g., endocrinologist) versus spilling my guts on my whole cancer journey. It's important that even the eye doc knows about bc just to be careful.
Bev
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Thanks IntoLight, Philly & Moomala. I was panic because I never had it for my last 7 cycles.
Yes Philly. The pain was relieved once gas expel.
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Priya - I have experienced that fatigue and need for lots of sleep. I just slept till 11:30M this morning! 😬 A few ideas:
1) maybe your body needs sleep as you are healing?
2) depression can cause fatigue as well as cancer fatigue/medications (all the meds you/we are on have fatigue as a common side effect). Also, meds for depression can cause fatigue...
3) for me, my fatigue is also partially caused by the fact that my sleep is greatly interrupted now with hot flashes and insomnia (thanks to medical menopause). So I am more tired because I am not getting steady sleep.
Ideas to think about to help with the fatigue:
1) my #1 best remedy for the fatigue is exercise. And for me this means serious exercise. It was insanely difficult to get started, but once I did, I was able to get into a routine (Not perfectly) and combat fatigue. It ALWAYS makes me feel so much better. We are not all equipped for serious exercise so even getting 30 minutes/day of walking around the block - could be in 5 minute increments, all counts and adds up. For me, I take intense cardio classes like cardio kickboxing and Zumba. It’s not easy but it feels fantastic!
2) talk to MO or psychiatrist? If fatigue is really bad, some prescribe something to help counter it.
3) if you’re not sleeping well and this is part of your fatigue, maybe try somethings to help sleep better? Melatonin (I take 20mg every night about one hour before bed), medical marijuana (if legal where you live) that is meant to calm and relax and help with sleep. Again, if you’re sleeping just fine, then these things could make your fatigue worse.
Hope this helps! My fatigue has been so intense like moving through thick pea soup. But it has gotten better thank goodness with all the things I am doing. Some days I am very energized and others I am slower than usual. I let myself rest on the slow days.
Hugs!
Philly
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42young - it's good that the pain is alleviated once the gas passes. That's a very good sign that the pain is simply from the gas!
When I first started treatment, I would be doubled over in bed with abdominal pain and gas. I don't know why this was happening, but it has since calmed down. Probably was during first 6 months to a year? Initially it was every night and then became occasional. Now, the pain is gone and it is simply gas. Some type of gut reaction to the meds. In my brain, I like to think of it as rumor die-off and how my body was processing it all. But who knows!
If it's really terrible, try the gas-x! I don't know why I didn't, I'm just stubborn. Also, some foods cause more GI distress and that is something that you could investigate too.
There's something called the LowFODMAP diet which helps alleviate highly gaseous producing foods from one's diet (usually this diet is for people with IBS and other GI disorders). It may be helpful to google this diet from a reliable website (I prefer medical websites or .org websites) to find out what foods they recommend avoiding to decrease gaseousness.
Hugs to you!
Philly
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Priya, I know I sound like a broken record here but you could think about asking your MO about lowering the dose of Ibrance. Many here do well on 100 or 75 mg. I have been stable on 75 mg for 3.5 years. For some, lowering the dose helps with fatigue for others, not.
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Thankyou Jaycee and LovefromPhilly for your kind and thoughtful replies..
Jaycee I think my MO wants to do that once and if my next scans are NED 🙏 hoping for that.
Philly - you nailed it..I feel like I’m swimming through pea soup! I will try to get a walk in as you mentioned. It is very very hard, but I will try.
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Nicole...I had lots of constipation. I now take prune juice. A small glass in the AM. It works better for me than eating the fruit.0
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Pat and Airline... I just worry about the sugar with those juices. Airline do you get unsweetened Prune Juice?
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I don worry about it...it is about 4 oz glass. I don't think the prune juice comes in unsweetened. My Onc was the one that suggested it. In the beginning (sorry to be so frank) my poops were so hard and I didn't have a lot of bowel movements. This did the trick for me.
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I'm moving on from Ibrance. It worked for about 15 months but abruptly quit. Due to scary liver numbers and symptoms, I'm back on intravenous chemo for an unknown amount of time. If that calms the liver we will move on to something else. I was on iv chemo last year for twelve weeks, once a week so I do kind of know what to expect, for good and bad. Just ordered two new hardcover today. Anyway, I've had one else last week and will go again Thurs. Repeat as necessary.
Keep dancing Ibrance dancers!
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MuddlingThrough... I am so sorry Ibrance stopped working for you
I wish you the most success with your next treatment.0 -
Muddling, I'm feeling confident you'll be returning to the Dance! My doc believes people for whom it worked can possibly return to Ibrance after other treatments do their job.
Stay here with us and know that we are praying for good things!
Love from PatGMc
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Muddling- Prayers for the IV chemo to kick the cancer. Keep posting on BCO. I will watch for you.
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MuddlingThrough, keep up the good fight!
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MuddlingThrough, sorry to hear you need to change but I will pray your next treatment works well for you with few SEs. Let us know!
Just to add to the conversation, I find that one cup of coffee in the morning keeps me regular. Honest the stimulant works for me! If I have to go somewhere in the early morning I wait until I return before drinking it. But then I tend more towards diarrhea when I do have trouble. Also drink tons of water keeps me going...40 months and counting! Chris
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Pat where do you find lemon infused prunes?? I have never heard of them?
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Nicole, you can buy them directly from this website but my regular grocery store (Kroger) sells them so I'm guessing most others do too.
This is the Sunsweet Store:
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