Ibrance (Palbociclib)
Comments
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mshar, I’ve been on 75mg and 3 weeks on 2 weeks off pretty much from the first few months and I’m NED. Don’t sweat a drop thus far. However my nurse has suggested going to 2 weeks on and 2 off and that has freaked me. I’m already in the cheap seats .... lowest dose and a stretched schedule from the usual, so I’ve kicked that into the long grass for the moment. Scan results due in the next few weeks so we’ll see
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Radagasrabbit - farts? I experienced some of that with the first cycle of Ibrance ( I'm on cycle 2). No fireworks, just occasional farts. I was told that those were not SEs of Ibrance - well maybe just not reported. No farts this cycle, so far.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
7/19/2019 - swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimadex and Ibrance prescribed to shrink tumor prior to surgery
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1 more pill in the bottle for tomorrow. I’m both relieved and proud of myself at the same time for getting the first 3 weeks part of cycle 1 done. Waited so long to take the pills and when it came time to start it all became real. I remember during my teaching they told me to wash my hands after handling the Ibrance.....wash your hands but it’s perfectly safe to swallow...bottoms up, over the teeth and through the gums, lookout stomach here it comes! I’ve been hoping for more fatigue than I’ve been getting, I actually want the naps and sleeping, haven’t gotten much of either in a very long time. I feel the Ibrance/Aromasin combo might be interfering with what Ambien was helping with...getting through the night somewhat and getting some rest. So I may be asking MO about switching to something else. I take my Ibrance combo mid day in hopes of preventing any further sleeping issues, maybe it will have to be a morning thing?
See endocrinologist tomorrow about pituitary....nervous...almost worry I’m being sent there to “confirm” as MO said we’d discuss it after I saw him. Ugh. Scared. Had a great day at church today enjoyed some excellent peanut butter chocolate blonde brownies.
Yeah! Farts! Wind breaking, cutting the cheese, letting one rip...momentary seismic shifts of a gaseous nature. Never really had gastrointestinal issues in prior chemo other than being stopped up. So this side effect is new for me. I can deal with the gas, tiny sores on my tongue not so much. Get to see how counts look on my off week on 14th. Curious if previously exercised marrow enjoys this regimen.
ONJ is one of my concerns too with Zometa, insurance won’t approve Xgeva for me unless Zometa doesn’t do the job well enough.
This is a busy thread, I hope I can be more outwardly toward posters on here as I move along with treatment. Still navigating the ups and downs. Stage 4 forums are hard for me sometimes, so many going through so many things. Just wishing I could take away the pain, unsure how to support and what to say.
Pain in back has been moderate, if I push too much during day it really hurts. When pain surfaces I feel like such a lump stuck on pillow mountain I’ve created on my bed to try to relieve the discomfort. My husband and I got a kitten around when I was diagnosed Stage 4, she is my constant companion and my assistant while on the computer, see picture above
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Dear RadagastRabbit,
Congrats on getting through cycle 1. I've just finished up cycle 4 and am on "rest week." For me, the rest weeks are great -- it takes about 3 days and then I feel pretty normal, just in time to relax and get ready for the next cycle. Those tongue things should heal up after about 3 days or so, if your pattern follows mine. It IS irritating, though.
So funny that you said you had "training" for Ibrance, and that they told you to wash your hands, etc. Even though I'm at an NCI center, the hospital pharmacist only told me not to put the Ibrance pills into a pill box with other pills. No mention about washing my hands, etc. And you are right -- it's funny because then we're putting the dang pill into our bodies. What difference does it make if we wash out hands after handling it? It's already in our system.
Get that last pill in and enjoy your week off!
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Radagas- Love the pic of your baby. I have a baby too (mine 9 years old now). He is my sleeping buddy. They are wonderful, aren't they.
I have been on Ibrance for 2 years now, so I don't remember when the fatigue really hits. But boy howdy, I have the fatigue now. Just the other day I was busy around the house and it hit. BAM. Had to stop what I was doing and lie down. Feels like a balloon deflating.
The peanut butter chocolate blonde brownies sound delish !!!!
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Radagast...love your kitty. My Russian Blue was my favorite and I have had kitties always. Right now I have a Tortoise shell. She is a bit snippy at times which is normal for that breed. She is eleven and has diabetes but she won't eat her special food and I am reluctant to do the medicine regimen (shots, blood testing, etc.) so she may not last much longer. I have enough on my plate without taking care of her too and the rest of the family agrees, so this may be a sad season.
I am in the middle of my week off cycle 44, and finally feel better after having been sick with a virus for a whole month. We have been cleaning out the den cupboard (8 doors, 2 levels and deep). I can only last a couple of hours before the back pain kicks in. I am thankful for my daughter who does the bending and lifting. I would willingly throw it all away as I just don't care about stuff anymore, but it is not just mine. This disease has changed so many things.
I understand about not knowing what to say on this thread, but sometimes I feel that just talking about normal life is needed most sometimes. Yes, I fear ONJ (I have been on Zometa 3 1/2 years) and have the other SEs you all speak of, but I am thankful for every day I wake up. I have the dreaded PET scan on Friday so the scanxiety is starting, but I am praying for good results so I can have a peaceful Christmas.
Have a good week everyone.
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Intolight, I've got a PatGMc pre-approved plan for you:
Don't get scanned until the first week of January! Just call in the morning and cancel that sucker!
I hope all of you will follow this advice and just enjoy the holidays. Nothing earth-shattering will be done right away with that knowledge, amiright?
Sending all of you love for the week!
PatGMcIgnoranceIsBliss
(Rolling along as Week 2 of Lynparza ends.)
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Hahaha hi Pat!!! So good to see you! I love your advice! Seeing my MO in a week and it has been over 6 months since my last set scans. I am thinking about asking for some. He lets me steer the ship quite often around scans, cause so far nothing wild has happened.
I am finishing cycle 34 (?) of Ibrance. Still going along well. Seems like I am more energetic in certain ways than ever and yet more tired in others. I have slacked from my regimen these past couple weeks of exercise. But today I took a nice walk with my bff around the city. Her mastectomy is coming up in mid December so we are processing a lot. I am amazed at the resilience we all have even in the face of such difficult life stuff. We are all so amazing. I know it’s NOT easy often, but we push through every day. Show up for work and loved ones and life, every day.
I love the idea of us all doing what we can to lessen our stress as much as we possibly can!!!
Love to you PatMcG and everyone else!
And Radas I fart a LOT too from the meds. 🙋🏽♀️ I actually had such awful gas pains when I first started treatments that until I was actually certain it was actually only gas, I almost took myself to the ER.
It has calmed down quite a bit since but I def notice some lethal farts with Ibrance. It absolutely can cause gastric distress (which in my book, smelly farts are within that definition!).
You could try Gas-x. That is a very gentle safe OTC medication and works incredibly well. Also, you may want to look at your diet and maybe take an inventory of foods you are eating that seem to cause more problems.0 -
For those newly experiencing flatulence, in my case, it was the letrozole. Different brands use different fillers, and those are sometimes what causes the distress. A simple brand change, and I was fine. Haven't experienced anything like that, since I switched to Accord brand. My pharmacy now knows NOT to substitute a wrong brand!
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Okay, ladies, as one who used to have gas quite a bit depending on what I ate, I was quite surprised to rarely pass gas for my entire 3 years on Ibrance. Now you've made me put my mind to figuring out what I did to de-gas myself.
It has to be the Pepcid AC I've taken every night. That or the Tums. I didn't take Letrozole.
The only other thing different is hanging out with you folks!
Happy Monday! (I have to say I've never heard such a colorful description of passing gas as I heard here last week. I'm going to share it with my granddaughter who has yet to outgrow a good laugh over flatulence.)
Love from PatGMcQuiet
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Two questions for Intolight, longtime Ibrance-AI user with liver and bone mets, HR+ HER-.
1. You have mentioned in earlier posts that your TMs fluctuate. What is the range of fluctuation and any guesses for the variances? My MO uses ca 15.3. (This question specifically addresses those of us that have reliable TMs.)
2. With your healing or healed liver mets, do you have occasional right side pain under ribs? I do, I have wondered if it is associatrd with liver mets shrinking and disturbing the outer liver lining or stool peristolic movement in the 90 degree bend where ascending colon meets transverse colon. CT scans do not explain.
P.S. Just started cycle 38 Ibrance 100mg.
S
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Pat, great minds think alike. My every four month Pet should be in Dec. but I will put it off until January. Had decided that last month. My big problem is coming to the fore. My current MO has decided and will move to her new building/practice in January. Do I stay or do I go? I have an MO picked out at my current practice and feel good about that. I suppose I should talk to him first but I don't feel like taking the time. I like my current MO pretty much but her new office is in a terrible place to drive. And I REALLY hate leaving my nurses. This is a really hard decision to make. My current MO saved me from mean guy (if you remember that far back) so I owe her for that. I don't know how I am going to tell her if I decide to stay. I complain all the time about people being wishy-washy but I am being wishy-washy myself.
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Hi SandiBeach... I will attempt to answer your questions.
1. My TMs were never extra high, even at original dx so they are unreliable. They were high normal then and have hovered in the normal range after the first 3 months, but they fluctuate about 10 points up and down. Yes, ca 15.3 is used for breast cancer. My onc says they are unreliable in my case as they registered normal from the beginning but she watches them in case they jump over normal. I don't receive that information unless I ask.
2. I have never had pain related to my liver mets that I know of. Any pain in that area I have associated with gut issues, and yes I have those which are related to flatulance (yes I am gassy). Like someone else mentioned, I almost went to the ER with them. What I have experienced are side muscle cramps. They are excruciating and last a minute or so. We have never figured out why, but it is muscle as they occur randomly when I move wrong. I had hip pain that I associated with bone mets in the beginning. It has been gone for a couple of years but just this last week I have felt mild hip discomfort when I wake up. I fear progression and will find out next week.
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Thanks Intolight.
I understand about new symptoms can make you immediately worry about progression. Now you have to spend the next few days being anxious. That is such a waste of our good days.
Yesterday, I received my second Shingrix vaccination. I can feel it today..headache, so very tired and chills. I read the 2nd shot could have those SEs. So here's to a better tomorrow and hopefully, in the future, no painful Shingles!
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Hi SandiBeach, my MO didn't want me to get a shingles vaccination because it was a live virus. Did your MO say anything to you about that?
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Thanks all for the info! It makes me feel a lot better about having to reduce after this cycle, if that's what ends up happening. BevJen, did you say you were told not to put the ibrance in a case with other pills? Why not? I do that every day!
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Simone80,
I had the 2 part Shingrix vaccine, made from dead or inactivated virus. Available in 2017 to prevent Shingles.
Your MO might be referring to Zostavax, made from live or weakened virus.
Hope that helps.
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Hi Sandibeach-I had my first Shingrex shot on Friday. On Saturday I was so achey and even had a bit of a fever so I can commiserate with you on this. But a few days of feeling sick are much better than risking getting shingles.
Simone-My MO wouldn't let me get the first shingles vax that came out but she was fine with Shingrex. The side effects I experienced quickly abated even though I have low white blood counts. Here in Chicago it is hard to find the Shingrex vaccine. I was in a Jewel on Friday and they had it so I decided to go for it.
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I've been putting Ibrance in a pill organizer/box for 42 cycles. What, the pills are supposed to touch each other? I pretty sure they do once they get to your stomach.
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Jaycee, I put mine into a pill box organizer too. I had not heard we shouldn't. My box contains the Ibrance, letrozole, eliquis (4 pills), synthroid, and venlafexine (2 pills since I have two different strengths). Thank goodness for the organizers.
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Yes, folks, the hospital pharmacist told me not to mix my Ibrance with any other pills in a pill container. Had I really focused on what she was saying, I probably would have expressed surprise. As Jaycee said, they all mix in your stomach together. But this is what she said. Now that I think about it, it's pretty ridiculous.
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Thanks Chicago and Sandibeach. I’ll look for Shingrex. I really would like to get that. My sister had the shingles and she said it was very painful
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Simone,
And my oncologist said no problem with getting the Shingrex shots. I got my first one with few side effects, and this just reminded me that I'm due for my second one some time soon.
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Endocrinologist appt went well, didn't send a vampire to take any blood from me so that was kinda nice since I already have a date with one on the 14th to check my counts. Less pokes = happier me
We discussed pituitary, my blood work, prior brain mri and I got the all clear, alot of stuff was said and to be honest I didn't really listen past "all clear". That's all I wanted to know...I thought to myself "and for heavens sake don't tell me anymore than I need to know, I'll be over it emotionally like white on rice". So, onward and upward dealing with these darn bone mets. I gotta tell you that was a relief to have one less thing on the plate, I was all scared I had brain mets or something. Heck, I didn't know what to expect, going from Stage 2 to 4 in less than a yr is enough to keep anyone on edge. Today, I'm giving myself the day off mentally...maybe think of absolutely nothing til thursday...sounds good to me!Took my last Ibrance pill in the bottle this morning, I'm switching to mornings with everything because the timing seems easier to me. Get it out of the way and then just move on with the rest of my day. Works for me! My husband and I have been getting quite the giggle about the gas, It'll just happen and his eyes will get huge and we'll start laughing about it. It really feels good to laugh...when things are scary, or can be scary, its good to find some relief even if a tad bit crude. If passing gas and laughing about it helps me get through treatment, I'll take it!
Making fish tacos tonight: I char slightly and heat up tortillas and fill with cod, scallions, red onion, pico de gallo, shredded cabbage, a bit of monterey jack cheese, and a drizzle of avocado ranch aioli. I'm making my version of baked potatoes with it. I cut up about 4 or 5 potatoes into cubes season with salt, pepper, garlic powder, onion powder, chili powder and cumin, then I drizzle it with a good amount of extra virgin olive oil and mix it up - throw it on a greased sheet pan and sprinkle with dried parsley, bake at 400 for about 30-35 mins. Enough for dinner and for breakfast hashbrowns in the morning.
I'm excited to find out what a week off feels like
Cycling on!
Edited to comment on pill thing, I think its just like Bev and I were lamenting above, wash your hands but put it in your stomach...yeah okay, i wouldn't think it would really matter if they touched, all going to the same place anyways.
Violet is the little one (shes grown up a bit since then, my constant companion)...big sister is Vera...both always with me
This is Milo, 11 years young AND a 2 yr cancer survivor - also my constant companion
Just imagine 2 cats and a dog wanting to be in the recliner at the same time as you = life everyday lol
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Hi all. Love all the posts. No gas here, just constipation. Prune juice, fruit, vegies. Gotta love it. I do keep my Ibrance in the original bottle but I pour the pill into my hand to take it. Haven't had Shingles vaccine--- no one, PCP or MO, has brought it up.
Intolight- Will be thinking of you Friday.
Jaycee- If you like your current MO, stay with her.
Radagast- Violet is precious !!!! Look at that head !!! Just want to kiss it !!!! Can you tell I am a cat person. 2 cats and a dog on the recliner with you sounds like Heaven to me.
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Jensgotthis, you have me beat on the number of pills in the organizer. I have four. But I have two more in the bedroom, the one I take at bedtime and the one I take first thing in the AM. Maybe we are even. I lost track. Remember when you said you would never talk about how many pills you take like your parents did?
Bev, for me the organizer is to remember IF you took something, not to remind you to take it. Look in the box, see if it's gone. (I still use it to tell me what day of the week it is. Open each compartment until you find one that is not empty.)
Maybe putting them all in the box with the Ibrance would mean the powder on the Ibrance would get on the other pills. Then maybe you'd have to wash your hands before/after each pill. Not doing that.
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Jaycee, I'm all for staying with friendly nurses in a place that feels familiar. It's good to remember that none of this is written in stone. You can change your mind at any time.
Love from PatGMc
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To those of you having odd pains in the side:
I have these and I thought they might be from the AI for a while. I finally figured out the XGeva causes them. I deduced this by seeing what happened when I took two separate monthly breaks from XGeva. Within two weeks off the drug the pains were gone. After I got the shot again the pain gradually came back.
It makes twisting to wipe myself uncomfortable. WTMI? Nah! Not with you gas talkers!
Love from PatGMc
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Radagast, you do realize you included two cancer cures in your last post?!
I've studied Laughter Therapy for years, even went to Association for Applied & Therapeutic Humor conferences for years. A scientist reported at one that laughter produces Natural Killer Cells whose job it is to go in and surround cancer cells. They did blood tests and proved it.
Keep tooting and laughing, my friend! And keep the husband as having someone to laugh with is also proven to be therapeutic.
The other "cure" you mentioned came out in a study last week.....early evidence that Extra Virgin Olive Oil could contain an active ingredient against breast, prostate, colon and melanoma!
Throw away those nasty capsules that pharmacists say can't even get along with each other and go with these two. Way cheaper!
Love from PatGMc
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Hi everyone! Just stopping in to say hello. I don't post everyday but I do read everyday. You are all in my thoughts and prayers everyday too.
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