Ibrance (Palbociclib)
Comments
-
Candy, who was it from that you “heard” there would be no privacy rooms after the renovations. Don't just talk to a nurse or receptionist. Rather than listen to heresay, it may be a good idea to ask someone in charge of the reno. Was the reno story on the news? If so, find out who was interviewed and make a phone call. Or ask at the hospital who you might talk to. I am sure that someone in the hierarchy there would be glad to address some of your concerns. They might even have a drawing available showing the new configuration. Then you will know for sure.That’s what I’d do. I am nibby and look things up and do a little research and will question when necessary. Often, it clears up confusion I have about what’s going on.
0 -
I was surprised when our new cancer center didnt offer the privacy that the hippa act calls for. Ours is like yours Candy, but bigger. 3 private bed rooms and 20 uncomfortable recliners arranged in spacious pods of 4 with curtains. Whoopee. Id have thought once your out of the waiting room you wouldnt encounter any other patients. So much for privacy.
1st stop is check in. 2nd is blood draw for lab work. 3rd is Dr or PA for privacy stuff and for them to order treatment. Finally to infusion room for- in my case - injections. But really I sit there and wait for faslodex to warm up then to private room to pull down pants. Its convenient enough. Lots of bathrooms. Down long hall for xrays if needed. Anything else you schedule. I go to different facility for scans.
They are advertising a new system at one facility where you go straight to your room and everybody comes to you. Not cancer clinic. Hoping to cut down on spreading germs, i think they said.
Gailmary
0 -
I also use the big organizer for my Ibrance/Letrozole. I put both pills in the compartments together for the first three weeks and just the Letrozole the last week. Easy peasy. I keep it on the kitchen counter with the rest of my meds. I set the alarm on my cell phone to remember what time to take "whatever". I've always taken my Letrozole around lunch time and my Ibrance with dinner between 6 and 7:00 pm. I've never had any side effects.
At my oncology facility, I first have routine lab work - finger prick for CBC, answer numerous questions, get weighed, temp taken, BP, oxygen level etc. From there, I see my oncologist who has the CBC results immediately. From his office, I go to the infusion area for a CMP taken from my port and port flush. And, have my XGeva injection. After that, I'm out the door for four weeks. It's interesting how different facilities work. Oh, and bathroom available in doctor area and two bathrooms in the infusion area. No TV, but music softly played in the background. All infusion chairs are recliners.
Hope
0 -
Thanks for all the good discussion about your cancer facilities. Any more just chime in. This is interesting.
DivineMrsM- I was told of the reno from the receptionist at the office last time I was there. She was giving me the "heads up" that I would be going to the hospital building for the port flush and injections starting in April. This was the first I had heard of it. No news stories or even info sent to the patients. No drawings of the changes displayed either. The staff seems unsure of how it will flow after the reno is done. When I asked them questions they were hesitant to answer. ?? I guess they are concerned about the upcoming changes too. You know how it is when your place of work is going thru changes. Yes, I can reach out to the administration about my questions about the reno, but the plans are made--they start construction soon. Maybe they would be willing to change the procedure for asking the personal questions, but if the plans don't include private rooms or beds they cannot change that now, too late.
Currently, the recliners in the open area do not have any sort of curtain between them. Not that a curtain prevents you from hearing how others are answering their nurses questions or them from hearing yours. The nurse rolls a computer around to the patients and gathers vital signs and asks the questions. I don't know how it works if someone has a reaction to the treatment or becomes sick.
I just starting looking at it differently. Do other areas of healthcare treat the patients like this? Lined up in a row receiving their treatments.
Keep the comments coming.
0 -
Oh my word Ladies.... the whole treatment practicality, drug organisation and privacy thing is a BIG deal. Put simply - Here in Scotland, if you have private care E.g.BUPA everything is exactly that..... your own room, toilet and pharmacy regime.
In National Health Service ( NHS) you are in an open forum for bloods, chemo and wards, including toilets, for hospital stays unless you are in crisis. Pharmacy protocols means you need to travel to collect Ibrance in person - or designate a nominated person. There is no system for 'posting' the drug out.
Should say all my original treatment was through BUPA 11 years ago and I did very well. Now at stage lV I'm in NHS and doing OK - BUT I still pay for BUPA and am not using it currently as seriously afraid of huge premium hikes....however they will still cover me and when I get to needing care in hospital as opposed to outpatients I WILL be switching!
Oh and I use a 7 day pill box for my meds....stuff the fact that the drugs cost a bomb if I can't remember if I've taken them
0 -
Karen- Interesting. I am trying to understand healthcare in places other than the United States. What is the difference in BUPA and NHS--who has BUPA and who has NHS? How much for the coverage? And it sounds like if you can afford BUPA you get more personalized care. How far do you travel to get Ibrance? I get mine from a pharmacy 2 states away---it is mailed to me.
0 -
Jensgotthis - there was a study done that showed that people who exercised while on AI's actually had improvement in their aches and pains! With this is mind, I drag myself to my cardiac class even on my most exhausted days. I always feel better afterwards and it seems to loosen me up.
0 -
I use the big pill box and set up the full cycle of ibrance, letrozole, multi vitamin and cholesterol pill. Hubby figured out that the strips for each week lift out from the edges, so I leave the big box in a cupboard and just keep handy the one week strip I need. I take everything with breakfast since that’s my most predictable meal as far as regular time.
I’m wondering: I’ve had to take an extra week off due to low counts for two cycles now. Doc doesn’t seem concerned but said we may look at dose decrease or just keep the two week breaks. Did your counts change much with more cycles? I’m feeling good but the last neutrophil count was 840 and needed to be at least 1000. With waiting another week it went to about 1600.0 -
Rosie - I am waiting to start my 12th cycle and only once have I had a strong enough count to start after the 1 week break. Last Monday they were 400, so I go tomorrow and hope they are up to 1000. I go for scans April 10, then follow up with MO April 22 and I think he may lower my 125 to 100. I have had 4 scans since my mbc dx last January and all have been stable even though I am usually off 2 weeks. I hope they stay high for you!
Have a great week everyone!
0 -
Cure-ious so my conclusion from your post is that you want to get straight As. Do I have that right? ;-)
0 -
Rosie24, my Ibrance dose was changed on second cycle from 125 to 100 due to low neutrophils and platelets. Since then all counts have been consistent.
0 -
same exact thing happened to me as sunset experienced. It takes a little time to find your right rhythm with the medications. I think I got into rhythm by maybe cycle 5 or 6? I officially just took my last Ibrance of my 23rd cycle. Next month I start the “dreaded” 24 month milestone...eek! Will I make it past the median 24 cycle PFS mark??? Such a weird thing to think about!!!
0 -
Ichangedmyname, I was feeling trepidation upon reaching 24 months too. Good news - I think it was Cureious who shared the news from San Antonio BC conference that the PFS for bone only Mets was 36 months (+/-). So, I’m waiting until then to get nervous 😬0
-
Jensgotthis - I will happily take another 12 months!!!!! I love this good news :-) 💕💕💕 maybe by the time we get to that point, we will have 48!!!
0 -
Celebrating 30 months on Ibrance/Arimidex/XGeva!
And celebrating all of you, whether you've had one capsule, four years worth or whether you've moved on to the next thing.
Big time immunotherapies are coming our way and we'll be ready!
Love from PatGMc
0 -
I'm coming close to 2 years on I/L and admit I'm anxious. Wonder what's next. My last scan showed my primary tumor was stable, and no mention of my lung Mets or chest wall tumors. The report said " no evidence of metastatic disease". I still dread the next scan in May, but can still enjoy the time in between. And I appreciate all the info I get here.
0 -
elenas, please tell me you're going to celebrate that path report in a big way. "No evidence of metastatic disease" is huge. There are people wary of the word, "cured"....not me! I would embrace that term (and that piece of paper) until someone pried it out of my hands!! I wish you would scan it and show it here. What a hope-booster for all of us!
I'm dancing for you tonight!
Love from PatGMc
0 -
For women who haven't had prior hormonal treatment for mbc, 24 months on Ibrance without disease progression is a median number. So some women fell short of that and some went further and some even further than that because they have yet to progress even at four years +. As someone who has begun Ibrance, it isn't my first hormonal treatment, so I have no idea what kind of response to expect. Certainly, I hope for the best. For those getting reports of nead after being on the meds, it's wonderful! My opinion and experience, tho, is the disease must be managed, and while I'm one to entertain high expectations, I will not say cure.
0 -
Popping in from the kisqali thread. My kisqali comes in 21 day cycle prepackaged cards.
Are you guys getting ibrance in a bottle???
0 -
Jo, yes, Ibrance in a bottle.
For those of you who experienced low white blood cell counts, did you have any symptoms that accompanied that, or was it determined just through the blood work? Would the low counts cause fatigue or other physical trouble? Also, do you find yourself tolerating Ibrance better as months go by, or did you find yourself dealing with more symptoms the longer you are on the meds?
0 -
Mrs divine - my experience with Ibrance has been this:
When I started I became deeply fatigued. I was already deeply fatigued but this was different. The only remedy for the fatigue that I have found is exercise. If I don’t exercise regularly the more fatigue I feel. So it is forcing me to stay quite active. Which is funny because people are telling me I look the best I’ve ever looked (yikes!)
Other symptoms have come and gone. I have had a couple random weird blisters, a couple URIs, diarrhea, mouth sores and hair thinning/straightening. I’m sure there’s more but I’m unable to think what else at this time.
Hence, why we call it the Ibrance dance! Ya never know what kind of fun symptom may pop up each month and then they can just as easily mysteriously disappear!!
At this time, my main issues I’m having are a couple hours of diarrhea each week and the achy joints (which can also be from letrozole and/or Lupron and/or Xygeva).
My neutrophils have been pretty steadily at a 1.0 or 1000 and my WBCs have been at about 2.0-2.4 the whole time white a couple random dips and upswings here and there.
0 -
Janky, thanks for the info on your 12 cycles. I’ve read of others taking 2 weeks off each cycle with good scan results, which is the goal. Glad to hear you’re doing well.
All of you at two years or better, Changedname, PatgMc, Jensgotthis, Elenas, Sandibeach, that’s so good to hear for us who are new. My first few cycles have been easy as far as side effects and even those are most likely from the letrozole. I’d love to have a good run on I/L too.
0 -
This is the original Ibrance blister pack I received and used in April, 2016. Interesting design. Why not seven days on each row? Maybe it was designed for meds that have 31 days? But then there is that shaded row for the week off. I received two months like that then it came in a bottle.
This is Ibrance history. Maybe the Smithsonian wants it.
0 -
jaycee, your humor cracks me up.
I keep my pill organizer & bottle of Ibrance on the bedroom dresser in front of my jewelry box. I take a statin for cholestorol, wellbutrin and an anti anxiety med, fish oil, calcium & vitamin d. Usually have a bottle of water there, too.
Days of the week works best for me. The numbered approach of something like taking day 17 of the medicine on April 30 and then day 18 on May 1 has the potential to trip me up and confuse me. It is easiest to know I took the first pill Wednesday March 27, marked on a calendar, and proceed from there. If it's Tuesday night and I see Tuesday's meds still in the container, I know I forgot to take them that morning.
0 -
Does anyone else use their pill organizer to determine what day of the week it is? When you are retired, you just don't know sometimes. Midweek is hardest. I've had to open as many as three lids to find one that still had pills in it and voila, it's Thursday. Now, if you ever forget to take your pills, this method won't work but I never do. I just forget what day of the week it is.
0 -
hahahaaaaaa Jaycee!!!! I do this all the time and the dang Ibrance pill boxes are even see-through 😂 lo
0 -
Good discussions on pill organizers. When I got the purple care package from the manufacturer I threw it all in the trash. Books and all. Yeah, I was angry, and none of that stuff would help me. I keep my vitamins, calcium etc in a one-week pill box like I always did. I go to the bottles for the Ibrance and letrozole. I want to throw the letrozole bottle as far as I can, but so far I just meekly open it and swallow that yellow hell pill every day. About a week ago I decided to take it at night to see if I could avoid the worst hours. I might see a 5% improvement but I really think it's a placebo effect. I'm going to give it a month's trial. I make the little robot remind me of times to take meds. I've been on I/L for a year. I've only forgotten to take the meds once. So far.
I hear you about exercise helping but I cannot do it. I have tried. I grieve that loss of mobility, remember when I would briskly walk two to four miles every day and enjoy it.
0 -
Hi muddling...yes, I also threw my first 2 pill boxes away (yes, I have received one each year and I have my third one still.) I still use the bottles but kept this last case. I take my I/L at night and probiotics, etc. in the morning. I try to walk at least 20 minutes a day but that only happens a few times a week. That is about a much as I can do but it is good for me and I do feel better once I recover at home. I am fortunate enough that I can walk mostly flat on a sidewalk with occasional benches so I can sit if needed. My DH bought me a mobility scooter because we sometimes "walk" to the beach along the bay, and then down the boardwalk and it is about a 2 1/2 mile round trip. I enjoy getting out in the sunshine and I can accompany my daughter and granddaughter in their walks this way. I fought it at first, but I am glad I swallowed my pride and do it. People are usually very kind to me when I am on it. At least I can get out.
0 -
Divine, I had some extra fatigue but only knew of lower counts via blood test. Oddly, mine didn't dip until a couple of cycles in, but the neutrophils have stayed above 1.5 pretty much. My protein number is the one that's lagged the most. Weird
How are you feeling in these early days?
0 -
Thanks IntoLight. I'm glad the scooter is good for your longer trips. We live in the backwoods of the backwoods. There is nothing flat or level except about 30 feet of our sidewalk. I can walk, and I'm grateful. Like you, I can't go as far as I want. I am glad I can walk from the hospital entrance to the clinic entrance to the restrooms and all around there. This time last year I had to be pushed in a wheelchair, so I try to be glad for this. I improved each month late last year and I guess I just thought it would continue but I hit a wall.
0
