Ibrance (Palbociclib)
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time4cure, love reading that you’re coming up on a 4 years anniversary on the Ibrance!
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I had to chuckle. I got a UPS package today and was wondering what did I forget that I ordered. Opened it to find what I’d call an Ibrance starter kit. The nurse from CVS had mentioned they were sending this. A purple zipper canvas bag stuffed full of literature: a very glossy patient brochure—the pictures are reminiscent of the Ibrance commercials on tv, a resource brochure and a caregiver guide with more pictures. Also included is a fancy purple “treatment journal”. I mean, it’s beautiful, with green and white pages, textured tab pages, a pouch for who knows what and even a stretchy band to hold it closed. And finally, an Ibrance pill organizer that looks like its on steroids compared to the dinky little pill organizer I have. Not sure if I’ll use it, my pharmacist instructed me to keep the Ibrance in its bottle. Were any of you told that? Perhaps I will sift through some of this info when I find time.0
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Divine,
I was told by the specialty pharmacy keep it in the bottle and to wear a glove when handling it.
Hope this helps!
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Cure-ious- well, I certainly hope that my MO will be willing to switch to Alpelisib if it is approved by the time I need it- you never know how quickly someone feels comfortable using a new drug. I could always go back to UCSF- they have lots of experience with it.
That German bedrest experiment sounds awful- lying head down by 6 degrees the whole time- they are not paying enough. Have to speak German as well.
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I don't keep it in the bottle. I put it in a dinky pill organizer with my ungloved hands. Passing three years now. Must be ok.
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Cure-ious, speaking of possible next lines, when it looked like I had progression back in the summer of 2017, my MO recommended a trial that would move me to Falsodex and another CDK4/6 inhibitor -- I think Ribociclib. In general I had the impression that Falsodex -- either alone or in combo -- was a favored next line after progression on Ibrance/Femara. It's interesting that hasn't been discussed much lately. There certainly are some other promising new drugs being tested in combos. I still do have my eye on alisertib too.
Jens got this -- I do like the sound of your MO! Swinging for the fences for you! I suppose it good just have been a CYA statement, but it sounds like he/she is really fighting for you. I like that. :-)
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I think "swinging for the fences" is a good motto for all of us. Thank you, Jensgotthis!
Why would we not be thinking that with every capsule/pill/treatment we take?
We know a home run is possible because others have achieved that.
Batter up!
Love from PatGMc
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DivineMrsM, I use that pill organizer for both Ibrance and Letrozole, kept it in the purple bag. I also used the journal the first 6 months to track SEs and write down questions for MO. I handle the meds with my hands and wash afterwards.
Been 27 months.
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Penny- Yep, they usually move to Faslodex combo of some kind, because endocrine resistance is a given. I'd want a Faslodex-CDK4,5 inhibitor-PI3K inhibitor combo, and some immunotherapy.
or my favorite combo: Abemaciclib-Alpelisib-Alisertib-Aromasin-Atezolizumab.
Just a pinch of everything.
PS Or, replace Aromasin with the oral SERD (Faslodex replacement), AZD9496.
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I totally use the Ibrance pill container for my Ibrance, letrozole and Lexapro. It really helps me remember what I have taken and when. I take my letrozole and Lexapro in the a.m. and my ibrance at night. No gloves. Next cycle will be 24 🙌🏽 💃🏿!
And a good reminder from time for a cure about being grateful for every day. I need to remember that! I sometimes forget that it is a miracle and amazing that I am still alive and functioning as incredibly well as I am!
Pick of my Ibrance pill box. One more left of cycle 23 to be taken tomorrow! Blood work coming up on Friday and MO appointment with Lupron and Xgeva shot Monday the 8th.
Round and round we go in the circle game!!!
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I totally use the Ibrance pill container for my Ibrance, letrozole and Lexapro. It really helps me remember what I have taken and when. I take my letrozole and Lexapro in the a.m. and my ibrance at night. No gloves. Next cycle will be 24 🙌🏽 💃🏿!
And a good reminder from time for a cure about being grateful for every day. I need to remember that! I sometimes forget that it is a miracle and amazing that I am still alive and functioning as incredibly well as I am!
Pick of my Ibrance pill box. One more left of cycle 23 to be taken tomorrow! Blood work coming up on Friday and MO appointment with Lupron and Xgeva shot Monday the 8th.
Round and round we go in the circle game!!!
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cure— that’s a tongue twister!
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I find I have to use the big pill organizer because sometimes I can’t remember if I’ve taken my med yet. I also take my Ibrance at night and everything else in the morning (except my blood thinners which I take at both times).
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those of you who take your ibrance at night, what do you notice is different than morning? Or why? I'm just wrapping up my first cycle on Monday.
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Can you tell me about pain that you have other than that at the specific site of your Mets?
I have days where you could lightly poke anywhere on my body and it would hurt. Today, my whole body hurts - not like it does when I’ve had the flu. More like I feel swollen. My legs are killing me, they hurt to walk but if I keep walking through it then the pain feels a little better.
When I first started letrozole I had the awful pain in the bottom of my feet. Thats gotten better on its own but my joints and my everything else hurts now.
If you have something similar, what do you do for it? When I go swim, the pain goes way down for about 2 days. Is this inflammation or circulation pain or what? Is there something I can take on days when it’s bad (other than ibuprofen cause of the blood thinners). I wouldn’t say this is a new pain, it’s just bothering me more
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And just a petty vent about the Verzenio Relentless campaign. I look forward to my week off of Ibrance. It’s likely just a placebo response, but I start to feel much better that week overall. And I think I’m pretty relentless too. That said, if I get switched to Verzenio at some point I’ll gratefully take it and the big D (diahrea) that accompanies it. I hate advertising and usually just don’t pay attention to it but the Relentless message is on virtually every page of BCO lately. Vent iver
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Jens...I definitely am painful when poked on my legs and arms. Even a pedicure massage is a little painful. I get random pains in other places, but if they don't last long, I know they aren't mets. I was told not to take ibuprofin so I only take tylenol, and that sparingly. Also, I feel worse on my week off. I know it is from the Letrozole but since I am almost at 3 years on this combo and doing well I don't want to change anything.
Jenny, I take my Ibrance at night because it is best to take with a good meal and my mornings are too inconsistent. I feel fine in the morning but have never taken my Ibrance in the morning. I take other supplements then and I don't want to take them together.
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hi Jensgotthis,
I sometimes just feel achy all over and I feel this way until I start moving. If I sit for longer than a few minutes with my legs crossed one way, I have to recross them the other way because I start to get aches in my knees and legs...it’s totally bizarre! If I am sitting up in a chair, I have to move my shoulder joints and arms around to help get the circulation moving. Tylenol can help with the pain and discomfort. Exercise feels really amazing while it’s happening, and I love hot showers and hot tubs.
I feel like sometimes my mind is in pain...I know that is maybe dramatic sounding, but it like hurts almost to think too hard! And I feel like my brain just isn’t working as well as it used to. Like I am unable to come up with interesting concepts and ideas while those around me seem to be quite creative. I feel blocked! It is, in a way, painful.
Please vent away! I am kinda crabby right now. Feeling some of the isolation/loneliness/sadness/anger/frustration around being on all the meds and having to deal with the dang C at all. I’m grateful to be alive and at the same time, often feel quite terrified at the idea that these could be the last months or years that I will be able to keep on going and moving. Pity party happening!!!
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Thanks for sharing your experiences friends. Once again, it’s helpful to not feel alone. I just have to keep remembering that tomorrow is a different day
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Namechange, well, I’m impressed with that photo of your pill organizer. I’d started to read the literature on how to set that up and was confused, and then it all made sense when I saw your photo. I can relate to your comments on how your brain isn’t maybe as spry as it once was. I feel that, too, and even organizing the pill organizer in such a manner seems like too many steps for me. The simple Sunday through Saturday way of taking meds is about my speed.
It’s interesting to hear at what time of day everyone takes Ibrance. Morning works best for me as I know I will remember to take it, and no panicking if I’m not home later at a certain time. I also added a daily reminder to go off on my cell phone every morning.
Jaycee, haha! You make a good point that the most important thing about Ibrance is taking it!
Jen, I remember the bottoms of my feet being so sore when I first began Arimidex years ago. Then the soreness shifted to all around the outer edges of my feel. Kinda weird. But every once in awhile when walking, I land on my foot a certain way that’s so painful I stumble and I worry that people think I’m drunk because it’s random and hard to explain.
Light, I don’t take ibuprophen because I am allergic to it, but why were you told not to take it? I use Tylenol and sometimes 8-hour Tylenol is like the biggest treat I give myself because it helps with the aches best.
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I hope it is ok to post my question here although I am taking Kisqali rather than Ibrance. This thread is much more active and I think my question would be relevant to either drug. If you also take a probiotic, do you stagger the time? I'm still new to this medication and am struggling with GI side effects. I'm wondering if the Kisqali would simply immediately kill the probiotic if I took them at the same time.
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This is why I use the small weekly pill organizer. Where do you PUT the big monthly one? That "extra" space by my weekly one is for my water (which is on the other side now) later when I finish my tea (kept warm on my little cup warmer). I guess if I didn't have a container of cookies there, it might fit. The weekly one is just as good at reminding you what you have/have not taken.
Divine, I take Ibrance with dinner, in the evening. I take multiple meds/supplements with each meal. Dinner works best for me.
Leydi, I have been told not to take probiotics and antibiotics at the same time as the antibiotics will wipe out the probiotic. I don't know about Kisqali but that sort of makes sense.
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Morning all. Good discussions. I too received the purple Ibrance starter kit, but never used it. It is in my closet. I take my meds with breakfast straight out of the bottles.
So I want to start a poll. Let me explain. I have mentioned before I live in a rural community and receive my care at a small cancer center in my town. They handle all kinds of adult only cancer-- breast, prostate, lung, etc of our local residents and the surrounding small communities. They offer chemo and radiation therapy. Basics. They have been bought out by another company and, of course, when another company takes over they are going to renovate. The renovation will start in April and continue thru November, projected. During that time the patients will go to the local community hospital for their treatments and our doc visits will be in the back of the building (not the part being renovated). We will see how this goes. Now, in the treatment area there are 4 or 5 small private rooms with a bed for the sicker patients. When I was first diagnosed, with what we thought was Stage 2, and had chemo I was put in one of those private rooms to start the treatment in case I got sick or had a reaction. If the patients are stable on their treatment and feeling ok, there is a larger open space with several recliners so you get your treatment there and can visit with other patients. Now, I sit in one of those recliners when I go for my port flush and injections (but my Lupron I receive in the butt so we go into the private room for that). From what I am hearing, the renovations will include removing the private rooms with beds and just have an open space with recliners only.
So.... I wanted to take a poll from you all. Some of you in larger cities, large cancer centers, in all parts of the country and all over the world. I know some here are on pills only and have not had to go to an infusion center, but to those who receive treatments--injections, port flushes, chemo infusions what is your facility like?? Do you have private spaces, beds for the sicker patients??
Also, the question comes up about privacy issues. When I go for my port flush and injections, the nurse asks a list of questions--how is your appetite, any constipation or diarrhea issues, how is your pain, etc. She is asking me (and the other patients) these questions as we sit in our recliner in the open space. All can hear the responses.
I know simple little me cannot change what the company has plans to do. The plans are made and we will adjust to them, but I just wanted to use this site to hear what other cancer centers are like and maybe I could offer some small suggestion to my town on how to give good care to our people that are fighting their fight with cancer.
I am eager to hear your responses.
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Candy, the city I live in has a population of a little over 100,000. Medium sized, I guess? It has two hospitals. Most medical practices are owned by one of the hospitals. (That is fairly common now.) My oncology, radiology, gyn, and PCP practices all are. My oncology practice recently did a big renovation, too. They used to have the doctor's offices, exam rooms, and treatment area all on the first floor. They had a few small bedrooms for sicker patient and butt shots, etc. The main treatment area was open with recliners. The renovation moved the treatment area and small bedrooms upstairs. The doctor's offices and exam rooms are still downstairs. WHAT A PAIN. I check in downstairs. I go upstairs for blood work. I come downstairs for the office visit. I go BACK upstairs for Xgeva shot. I come BACK downstairs to check out. The biggest problem is that they no longer have BATHROOMS in the doctor's area downstairs. You have to go out in the hallway to use the restroom where you could miss the call for your office visit. I've mentioned this to my nurses and doctor several times but the hospital corporation makes the decisions and they have no control. This is modern medicine.
Wait, did I answer your questions? Probably not but I've been needing to vent about this for a year. Thanks for giving me the opportunity. They don't seem to consider patient comfort and convenience when making decisions about a renovation. Maybe you could ask about something I mentioned and see how they are going to handle it. The problem is you don't know it is an issue until it is too late. The decisions have all been made and you don't have a say.
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About the privacy thing...my onc's practice has a one page questionnaire about symptoms that I fill out every time at check in. That covers some of the privacy issues. When I get the Xgeva shot in my stomach, I just pull up my shirt as discreetly as possible. (What?) They always ask for your birthday for identity which is one of the items used for identity theft. I worry sometimes then I think is someone going to fake having cancer so they can steal identities? Probably not.
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Candy, My AC chemo was in private room.
Now since I am Ibrance/Letrozole, I only get my monthly port flush/labs, and every 6 months the prolia injection in the main lounge chair area. Looks like about 10-12 chairs..all open to patients, family, guests and volunteers.
The RNs access there my port and my arm for the injection. I wear clothing for easy access. They never ask me personal questions..just take my BP and temp.
Of course, what might be different is that I see my MO directly afterwards. Any personal info will be asked by the RN in the physician room..like change of meds, weight, any changes, how I feel, etc.
I would be embarrassed, too, to reveal personal info in front of others and their guests. Can you bring up this concern?
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My set up:
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Hi all;
https://www.mskcc.org/announcements/combination-immunotherapy-boosts-car-cell-approach-solid-tumors
This is exciting and I'm sure you all know about it but it helped explain the process to me.
Love to all,
Cathy
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Candy, I live in a large city (San Diego) so there are many different hospitals and set ups. I am with Kaiser and go to one of the Kaiser hospitals for my treatments and to see my onc. I get my infusion in the infusion room which is open with recliners in the middle (with curtains in between to pull if needed) and beds along one side (about 8) all open with curtains in between. They do my stats (BP, weight, temp) in an alcove once I first enter the room away from others, then we move on to the treatment area. Chemo is also delivered in the same large room which is why there are beds. If there is a bed open I can use a bed and relax which is great, but the recliner is fine with me. There are occasional visitors, but the bed area is large enough it is usually ok. My onc and infusion center are upstairs, the pharmacy is on ground level, and the lab is downstairs, but they are all close to the elevators. The hospital is old. They built a newer one a few miles away, but I am glad my onc stayed in the older one. It is less busy now and everyone seems friendlier at the older hospital.
I tried the large pill organizer but got more confused and I am not good at marking things off, so I just use the bottle. If I am unsure whether I have taken it I have to count pills, but that has only happened twice in 3 years. If I start forgetting more I will try the organizer again. I just wash my hands after taking it, but i wash my hands all day anyways.
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I am loving these photos of the personal pill organizers!
I live in a small Ohio town of 5,000 and drive at least an hour (traffic usually makes it longer) to the cancer center at a large Pittsburgh hospital, Allegheny General.
The halls in the center are like an H. Down the right hall off to the right are two large treatment rooms. Down the left hall are the rooms where you see the doctor. In the center hall is a large desk station where you go to schedule appointments and tests/scans. The reception/seating is at the top of the H on the other side of the wall.
Both treatment rooms have an open area with treatment chairs, a large nurses station and a small room with a bed for those reasons you mentioned, Candy. Both treatment rooms have a large restroom so you can wheel your iv in there with you if needed. The rooms don't have TVs, and I was told that was so patients would have conversations with each other. Or maybe its so the nurses don't get too involved watching Y & R or Millionaire. I am half and half, I'll talk or stay quiet when it seems right.
Its a good set up. The only thing that was confusion at first is you go to the 5th floor in the parking garage which is the 6th floor of the hospital, enter the cancer center and take the elevator up, yes, up, to the 3rd floor. When you leave you take the elevator to the 2nd floor to go to the 5th floor of the parking garage. Yep.
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