Ibrance (Palbociclib)
Comments
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Candy,
Even without covid and other distractions, my MO does blood pulls the day after I finish out an Ibrance cycle of pills. The nadir/low point is actually around day 15, so you'd probably be okay getting blood pulled at another time -- so long as it's not the low point. Of course, if you've had issues with low counts, then that probably wouldn't work for you.
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Candy, my counts do not usually rebound until about three days after my last pill on the cycle. Perhaps they vary for others. PET scan has been accurate for me. I think it is important to compare same scans or tests. Mo MO also compares me CA-15 marker which is supposed to be the one for breast cancer. Perhaps others here more knowledgeable than I can chime in.
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Candy, I keep on top of all the scheduling appointments and treatments, too. The onc and her office do a reasonably good job keeping track, but I question or correct when necessary. Once the scheduler of appointments misinterpreted when my onc wanted me to scan—a big difference because she wanted to make an appt. in 3 months and I needed it ASAP. I corrected her, she quickly checked with the onc and all was okay. Another time my zometa iv got delayed because I had foot surgery. Later, I had to remind the onc to schedule it back in.
I also keep track of prescription refill timing from the specialty pharmacy. Had a lot of issues there.
I commend you for keeping on top of all your medical matters. You're advocating for yourself. You should feel good about looking out for yourself.
When asked questions by various medical personnel, some are surprised I'm knowledgable about mbc, treatment and meds. I eye roll at some questions—a phone call: “do you know how many pills you got with that prescription?" Um, yeah. 84. Says so on the bottle. I think it but am never actually rude to anyone.
Some patients leave everything up to the doctor and its not a good idea.
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WoW having just had the chat about the US system being pretty fast and efficient, I’m pretty shocked at the examples given by some of you around MOs and nurses not knowing what’s going on with you. Our’sare not infallible and the system is slow, but at least I feel that they know what’s up!
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Karen, one bad thing about the US system is the inequity. Some places and insurance companies are good and some slower. My provider is great and I feel my doctors and nurses do know what is going on. My oncologist is out right now (don't know why...COVID?) but I had a question so I emailed her and it was answered quickly by someone else in her office. I do advocate for myself and am not afraid to ask questions about anything. It is your body.
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Please keep in mind, I trust my oncologist whom I started going to over 9 years ago when I was diagnosed with mbc from the start. She was the one who ordered the scans that revealed the mbc. She is never in a hurry when she sees me. After I see her and have an exam, she records everything we've discuss on her laptop before I leave the room and goes over it with me. It is unrealistic to think she's never going to make a misstep over all those years. She is well educated and highly regarded in a large city hospital with great reputation. She works with her own nurse who's also been there for me these last nine years. (I'm not sure all oncologists have their own nurse). Every single time I've called the nurse and left a message, and you can imagine it's been often over the years, she returns my call the same day.
Most of the other medical professionals at this cancer center have been there the entire time I've gone there. From the receptionist to the appointment schedulers to the gals who take my vitals and quite a few of the oncology nurses who administer chemo, I know them all by name. They know me and always say hello when I'm in. Even the same woman who volunteers has been there for years. That this many employees remain with the cancer center tells me they are well paid with good working conditions and good working relationships. They know their stuff. They are both professional and personable, my favorite combination. Even so, I keep track of all my medical information and feel very comfortable speaking up and asking questions.
The specialty pharmacy is not affiliated with the cancer center. They have their own issues and I have to stay on top of it. It makes it harder when I am dealing with people on the phone who I never met in person.
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Candy - for whatever reason my record says I get monthly Xgeva shots, but not monthly Zoladex. Uh, the last one is the really important one folks! Its been months I've been correcting them (the nurses always check when I am in) and it still hasn't been updated. Or last week they were going to issue me Ibrance without the letrozole for the month from the pharmacy - uh, I kinda need the last one for the first one to make sense. But I am tuned in and informed - I could see these small errors being disastrous for someone more accepting, shall we say, of 'well the doctor said' approach.
Once we have moved house and we are through this virus crisis I am absolutely going to be on the look out for a new team. Just not jiving with this one to the point where I feel comfortable.
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Good morning all my fellow Ibrance dancers (and to anyone else that likes to read/post here!)
How is everyone doing today?
It is my 3 year cancerversary since my de novo diagnosis! I have been on Ibrance and letrozole and lupron and xgeva (just switched to Zometa) now since March/April 2017. I will try to calculate how many cycles of ibrance...let's see...either 39 or 40! Wowzers!
I am in the group that is seeing TMs rising. And I have had wonky scans (bone, ct, mri and pet!). My MO and I had a telemedicine call last week on Wednesday.
We decided that because MBC is systemic, and we are treating it systemically, that we really need more info before changing treatments...the new info would be looking at the following as our guides:
1) am I in pain or feeling badly? (my symptoms)
2) what do the scans show
3) we are going to check out my TMs again in a couple weeks and revisit my estrodial numbers to make sure that my estrogen isn't "leaking" out and maybe becoming tolerant to the meds. If it is, then there is discussion of possible oophorectomy down the line soon.
The thing that is so tricky with MBC is that there is so much wait and see...because we don't want to blow through our treatments too quickly. I am inspired by the knowledge that the longer we stay on the first line of treatment, the stats show that we will live longer...I guess I wonder about the stories of how some folks don't do well on a few drugs, and then they find their magical cocktail that pushes the cancer into hibernation and they are great for many years to come! I am hopeful for this to happen for each and every one of us!
Lots of love,
Philly
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So I go to the Lab and have monthly blood tests done the day before I am due to restart Ibrance. The order is a standing order in the lab computer. I take it upon myself to go the day I do. Then we have an accurate ANC count the day before the next cycle. If below 900, the doc wants me to hold Ibrance start. Then the doc sees the results and will call me to tell me to hold or not. I keep track of when labs done. They do not correspond to an office visit due to MO schedule. Not the same schedule as monthly Lupron injection. I want to keep labs, Lupron, and scans on a schedule. Just me. That is how I am.
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Although I'm still very much a novice on this MBC stuff, I wanted to reiteriate something LovefromPhilly posted: "The thing that is so tricky with MBC is that there is so much wait and see...because we don't want to blow through our treatments too quickly." This is almost exactly what my wife's MO said to us earlier this month. Although there were supposedly some minor increases in tumor size for my wife (1mm to 4mm), her MO was very reluctant to overreact. She said that several years ago, doctors would change treatments every time there was a small negative change. This didn't give any treatment truly time to work. As such, she advised more a "wait and see" approach. We're action oriented people and sitting on our hands to tough to take, but patience is sometimes necessary.
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Good point, BLMike and Philly,
That is exactly the way that I feel. Don't want to go through too many treatments, but it is hard to wait and see as well.
I just asked my MO if she would consider prescribing Celebrex for me because it supposedly blocks the PIK3 mutation. She is hesitant, I think, because there haven't been wide scale clinical trials on it with breast tumors. But they have done studies on head and neck cancer. If she won't do it, I guess I'll ask my internist. This is also a frustrating thing -- some MOs are SOOOOO conservative (mine) that they won't think outside of the box at all.
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Along the lines that you're speaking, BLMike, I find that family members often don't understand the wait and see approach. The uninformed take that to mean we aren't doing enough or doing the right thing to combat the bc. Many people seem to think breast cancer treatment is all black and white and one size fits all. They don't realize how much gray area is involved or how nuanced treatment can be from one person to the next. Some of my relatives think treatment is very precise all the time but that's not necessarily the case.
I tried Ibrance and Verzenio over the course of a year. Neither did absolutely anything for me. But I had to give them time to see if they were effective rather than rush to the next option. I'm not sure my family understands that way of thinking. My relatives want to make things urgent when it's often not the best approach. Maybe they watch too many medical drama shows.
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PEOPLE! It's not that you don't want to run through treatments too fast. It's that you don't want to run through THIS treatment too fast. There is nothing out there like Ibrance. Nothing. No other treatment out there has the incredibly mild side effect profile that Ibrance does. I will hang onto it for dear life. If my MO even suggests a change, I will say nope, nope and nope.
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Yep...those who are living in the world of healthy people approach treatment changes differently. I use to think I could rennovate my kitchen in an hour after seeing it done on HGTV. If only...
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Question for group, anyone on Lupron/Zoladex---- My MO wants to move date of injection to coincide with next appt (ease of scheduling). It would be 10 days late for 1 month, then back on monthly schedule. Is that ok?? She has tried to get me to move the timing before to get on her routine. It is going to happen in April now. With the virus issues, she wants to do appt, injections, and labs all in one visit. Xgeva will be a little later too, but I get it every 3 months. The Lupron is what I am worried about--monthly and being 10 days late for a dose.
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I have an appointment with my oncologist on April 8. I get blood work and a faslodex shot (every 4 weeks). The cancer clinic is located inside the hospital (different wing). Haven't heard if the appointment is cancelled or not but wondering what is happening with others.
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candy - I have had my injections put on hold for 1-2 weeks due to illness or travel. It has not been a problem at all.
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Wandering,
My cancer center, located in a separate building connected to the main hospital, went ahead with blood work and faslodex shots. They were screening patients at the entrance, and no other people could come in with you. I didn't have an MO appointment this month, but I think they are switching mostly to video appointments unless there is a reason to do otherwise.
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Candy,
When I was getting Zoladex, my onc said she said it would be ok to be up to 2 weeks late.
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Thanks Philly for your post. I feel better. I have always had the Lupron every 4 weeks--no illness or travel or anything to mess with schedule. I thought 1 time 10 days late would be ok, but don't want anything to cause cancer treatment to be delayed and give the cancer a chance to progress.
So I had my phone call visit with MO today. Not really liking not seeing MO in person, but this is what we have to do for the virus. And probably wave of the future (nurse commented MO likes this virtual visiting thing). The nurse called me first. He asked if I had vital signs. I said I didn't know I was supposed to do them. I have BP cuff and thermometer so next time I will do that and let him know. I do not have scale to check my weight. He asked if any changes in allergies or meds since last visit. Then he turned the phone over to the doc. I was with her for about 10 minutes (about the same as in person office visit). I mentioned some right sided discomfort I have been having (posted on Liver Met Thread). She asked if I have GERD. Duh, yes, it is on my history in the chart. We discussed moving the injections schedule and seeing her in person in 1 month. She said to go ahead with the next cycle of Ibrance even though we did not do labs this month--was due today but didn't go into the facility to get blood drawn. We never mentioned COVID-19 at all. I kind of wanted to discuss it--my lab numbers, the cases we have in the area, etc--- but didn't have time.
In regard to the conversation about keeping our cancer centers staff on top of our care------Today I also talked to the person in the office that does insurance auth for Xgeva. I keep a note of when auths are due. Auth for Xgeva due in April. The staff person said she needs to get on that. And thanked me for reminding her. She has so many patients that she is responsible for and I have only me. I sure don't want to be denied April's dose of Xgeva due to lack of auth paperwork, or get a bill for the injection ($5,000 per injection). Like I said, we have to keep track of things for our own care.
I like my MO and staff, but sometimes I wonder about them. Do they really keep up with my care. I worry about progression and if they will be up on it.
Edited to say -- thanks dutchiris also. That makes me feel better.
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Candy,
You've mentioned before that you were concerned if there was progression and what would you do. You know, you could probably do a virtual visit with another oncologist at a large center and get it covered by your insurance -- you might want to look into that now and either send records now and do it now or else just get it all set up so that you would know that it's available if and when you need it.
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Thanks BevJen for your suggestion. I changed insurance in Jan and I am finding they are stupid. I have a large, NCI, cancer center 2 hours away. I checked with insurance if they covered the docs there, just in case. And then I called the potential new cancer center. The nurse navigator said no need to see new doc till progression and need change in treatment. Then they would get records from my current MO and I could make appt with new MO. So while I am stable, no need for change in MO. I am definitely going to consult with NCI center when I have progression. I like my MO, very friendly, but I lose confidence in her when she makes comments, like today, that makes me think she is not looking at my records closely enough.
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Wandering. My faslodex was cancelled for a month. I guess it's got a half life of 50 days if that makes any difference. And I don't take ibrance anymore.
And doc thinks the xgeva helps.
I've been stable all along.
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I have found Ibrance overall very mild, I was very nervous before taking it the first time. Having a bit of ptsd regarding my memories of past treatments i was bracing for the worst and I ended up saying...heyyyyy, this isn't too bad. I can do this. Gas and mouth sores, whoppity do. Not that Ibrance can't be a pain in the butt or harder for some people, but because I've tolerated it generally well I really don't want to leave it. If TM's do eventually agree with a scan, Id go Ibrance/Faslodex. I agree about not leaving this drug too soon, in terms of SE its tolerable and I have QOL. I am 3 pills away from finishing cycle 5 at 125mg.
Thinking of all of us in the rising TM's catagory, BevJen said it most succinctly, This sucks. I hope next scans will give some answers, in the meantime we'll do the electric slide together or something! I remember being so excited to hear that song (electric slide) when the DJ would put it on, 6th grade dance, dark gymnasium, everyone thinks they are John Travolta on the dance floor. Fun times
My Ibrance has a first name its M-U-F-F-I-N
My Ibrance has a second name its C-U-T-T-E-R
Was watching the movie Robots the other day and was reminded of my nearest and dearest side effect
Love to you ladies!0 -
hahahahahahahaaaaaaaaaaaaa RadagastRabbit !!!!!!!!!!!!!!!!!!
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Love your sense of humor at this time radagastRabbit😂😂😂.
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Cure-ious,
Very interesting read. Thanks for the hope.
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Rabbit...LOL!
I just thought I was eating something wrong until you all mentioned this particular SE. Today I start my time off for this cycle...Yay!
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My MO has been in quarantine for almost 2 weeks. He’s well enough to make calls, so that’s good news. My appointment Friday has been canceled, but I will have my blood drawn next week at a less busy time. I don’t know when I’ll get my CT results.
Sorry to hear people have rising TMs. Mine rose for 18 months before starting to drop. It’s still above normal, but it is lower than it was a year ago.
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