Ibrance (Palbociclib)
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small rant to follow:
Finishing week 3 of current cycle. Each of the tablets has been really difficult to get to.
I usually pull the clipboard from the oval on the back and then push my thumbnail thru the foil to get to the tablet. But this week’s booklet doesn’t seem to have the pre-scored cutouts as clearly defined as the previous books. Have had to ask someone else to pull off the clipboard so u could push out the med for 2 of the doses.
I know I don’t like the tablet packaging so I come into the nightly process with a bias plus I have arthritis in both thumbs so getting each tablet is not without displeasure... but all of that aside, getting tablets this week really has been a struggle.
/end rant
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thanks for all your support ladies, it is very useful to know this information. I have never thought even sunburning can affect CA, during last cycle I started to walk under sunshine!!! Fingers crossed those numbers are fake. I’m gonna have to take scans next week, hopefully as you all said this jump is not related to progression.
When I told my MO about the fatigue that every cycle is greater than before, he looked up my blood counts, which are pretty low, then he reduced the dosage to 100, despite cea and ca2729 elevations, he said to continue the lower dose. I am in cycle 9 too!Forgive me if I don’t mention everyone by name to thank. You are awesome ladies. Believe me I learned much here than from oncologist team.
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DodgersGirl - the bottle of capsules was easier to access than the tablet package. I also find myself thinking 7 days off after finishing just one package rather than all 3, so have to think a little more. So, does anyone know if the tablets "spoil" if not individually wrapped? Did Pfeizer think the 3 punch out packages were easier than one bottle of pills? They are certainly not more convenient.
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Elenas,
Some oncologists do switch from an aromatase inhibitor to another estrogen-suppressing drug, and continue on Ibrance. That sounds like what your doc is doing here. AIs suppress the estrogen in a different manner than Faslodex and that's why they will try that before moving you off of Ibrance completely.
For what it's worth, I took letrozole by itself from 2006-2019, when I progressed, and so I went straight into Ibrance along with faslodex. I can tell you for sure that for me, the faslodex SEs are MUCH easier to take. I had about had it with letrozole when I was switched off of it, and I no longer have the creaky bones and assorted aches and pains as I did on letrozole.
So good luck on the change!
Denny10,
Many hopefully good years for you with Xeloda!!! Come back here and visit!
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BevJen: Thanks for your insight. Could be my imagination but I do feel a little less achy since switching to Faslodex, but more tired. That could be from my HER2+ treatments though.
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elenas- I was going to post about the subject, but BevJen said it well.
denny- Don't be a stranger. Let us know how you are doing.
Fatigue- I have fatigue no matter the time of the cycle. My MO said each drug-- Letrozole, Lupron, and Ibrance can cause fatigue. Being on all of them, no wonder I have fatigue.
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denny10, sorry to hear of your progression. Good luck on xeloda, I hope it gets you back to stable.
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Denny10: Hoping Xeloda works on your progression.
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Denny10– also sorry you had progression. May you get a long time from Xeloda.
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Aprilgirl1, I'm curious what your oncologist would do if scans don't show the cancer. That is why mine uses them, because I have ILC, and my cancer doesn't show in CT or PET/CT. My tumor markers have been pretty consistent since starting treatment. Still quite high but only moving up and down a few points each month. I kind of rely on them. The 27-29 went up 76 points in one month, but I didn't panic because I had just gotten over a bladder infection and I had a feeling they'd be up. They were back down the next month. My philosophy is unless they go up three or four months in a row, I'm not worried. I am truly asking because I’m curious, I hope you don’t feel I’m singling you out.
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DodgersGirl, I find the tablets hard (sometimes) to get through the back of the package. I've taken the handle of a wooden spoon to poke it through. I feel like I'm going to break my thumb just to push it through the cardboard and the foil.
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Ok ladies, for those that have followed my saga about transferring care/second opinion MO, here is an update....
I heard from 2nd opinion MO today--she called me. Tumor board met last Thursday. Unanimous vote from those at the tumor board, would continue Ibrance with my numbers. Would not get upset over 800 or 900 (0.8 or 0.9) ANC after normal week off. Esp with no sign of infections. Would continue to monitor and if slowly trends down, then may need to rethink. But then would tweek Ibrance schedule before stopping med altogether.
I then discussed logistics of transferring care to this MO and how often I would have to travel the 2 hour one way trip. Still working on that. MO asked if I have thought about getting ovaries out and that would eliminate monthly Lupron injection, but I reminded her that I still have Port and need it routinely flushed. So I am working on possibilities. Maybe current/old MO would be responsible for Lupron and Port locally and new MO would do everything else---- that would be every 3 month travel (scans and visits). New MO said she cannot order treatments - injection now or chemo in future- for me to do locally. She does not have licensure in Illinois. (New MO is located in Missouri.) But yet she said she could order labs to be done locally. ????? Labs versus meds?? So if I at some point move from pills to IV chemo, sounds like I would have to travel to get treatment, not have it done locally. That is scary. Sick and having to drive 2 hours one way by myself. A lot to still figure out and a lot to consider.
Thoughts ladies.......
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BlueGirlRedState - Pfizer says on their online literature for healthcare professionals that the pills should not be removed from their packaging and put in a pill box. Don’t know why.
“Can my patients still use their pill caddies for the tablet formulation?
No, patients should be advised that tablets are NOT meant to be removed from their blister packs and transferred to caddies. Patients may continue to use their pill caddies if they are still receiving IBRANCE capsules.
https://www.pfizerpro.com/product/ibrancetablets/hcp0 -
Candy, I’m glad she said don’t worry if ANC is 08 or .09. That’s where mine have been the last two times, and my MO has told me to go ahead each time.
If you had to move to IV chemo, couldn’t your MO here do that? You’re going to be doing some things locally and scans and visits away if I understand what you’re saying. I might suggest to do your next scan at the new MO. Maybe try scans at the new place to see if you get the same answers.
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candy - You are very wise to think about the future of your treatments when determining the best facility. Your situation doesn’t make the decision easy. I’m not sure what to advise you. All I can say is that for 3 years I got bloodwork orders from a doctor in Illinois and got the blood drawn in Wisconsin. So crossing state lines for bloodwork doesn’t seem to be a problem. I’m not real crazy about have one MO do certain things while another MO takes others. It seems to me that you would want one of them to be the driver. But what do I know? Maybe you can make it work by having them consult peer to peer regularly.
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Candy,
Two thoughts come to mind.
1. do you still need to have your port? I've never had one, so I don't know, but my friend recently was diagnosed with Hodgkins lymphoma. She had a port put in, had her three months of chemo, and had the port taken out. She said she'll replace it if and when she needs it next.
2. maybe she has a point about the lupron/ovaries.
And yes, I think that most big centers have ongoing relationships to labs -- for example, my center uses Lab Corps -- and once the order goes in, I could have those bloods pulled in Antartica if I wanted to. So that makes sense to me.
The bigger issue is the one that you've hit on -- what if you have to go to chemo at some point, and you surely don't want to make that drive? You don't want to tick off the local MO. So that's the issue really for you, as you've figured out.
Good luck -- tough decision.
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Candy, I spoke too soon last time when I mentioned that my count has been fine after 32+ cycles. Well, today after a week off, the count was 0.6
So here I go holding back starting until next week after they draw blood again. This has been the trend for the last 3 months, but today was especially low!
I discussed with MO briefly about 3 weeks on and 2 weeks off. Also, the possibility of going dow to 75 mg. On the positive note, MO thinks maybe that’s the body’s way of saying...that’s enough. Perhaps, a lower dosage wouldn’t hurt. A friend with stage iv has been on letrozole alone for 2+ years She is full of energy and doesn’t suffer from the side effects of Ibrance. That sounds pretty good too!
Wondering if the norm is changing schedule before lowering the dosage? Please kindly share your thoughts and experience.
Thanks!
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@KBL I was dx with stage IV due to a CT Scan of my throat because of laryngeal paralysis - which was caused by a cancer filled super clavicle lymph node. At that point I went from an ENT doc to an oncologist and had a full petscan and I had more neck and chest lymph nodes light up (mediastinal and paracard something) but no organ or bone. I started Ibrance/fulvestrant in November, follow up petscan showed some lymph nodes resolved and the rest were 2/3 shrunk. 6/30/2020 petscan showed NEAD which was both amazing and I am thankful!
My onc will continue to scan me every quarter for a while because she said some tumors that are just a few mm won't show up on a petcan. My tumor markers have never been elevated. My onc is really smart but pretty matter of fact and although she is happy the I/F is working so well, she told me at some point it might not but we have many more options, so just focus on now. I have IDC and I wonder if ILC correlates tumor markers? Either way my current onc and my 2008 onc (both at Seattle Cancer Care Alliance) are of the opinion that tumor marker elevation can be caused by so many things, they don't rely on them. I have no idea - just a gal on here with cancer, again! UGH.
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Candy, have you checked American cancer society website? If I recall “road to recovery” in there, you can apply, they’ll send you a volunteer to drive you and back for chemotherapy, in case you need it in the future. Just a thought.
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Candy, I like the tumor board‘s unanimous opinion on the Ibrance. Do you think your current MO would go along with that plan? If yes, I would lean to staying with her due to her closer proximity to you. I agree that the 2 hour drive could get difficult if you need to do it for monthly visits, or infusion chemo. I think early on you considered just consulting with the second opinion MO when needed. If that’s possible as a continuing option, I think that would be my choice.
You may have answered this already, but is there possibly another MO to consider within a 1 hour drive? I know you’ve lost some confidence in your current MO. Wishing you the best as you consider the pros and cons.
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Ladies you rock !!! Everyone is so caring here. You have had some good suggestions. I am going to try to answer/clarify your comments...
KBL- If I had to move to IV chemo at some point----- I don't get it really. Living in a rural area, I have heard of others in the community that has went to onc in St. Louis (Missouri) and got orders to get say 2 months of ___ and they went local (here in Illinois) to have their treatments. Or those that went to St. Louis to onc and then had daily radiation treatments in our town so they would not have to travel to St. Louis each day. So.... why not me?????? --- My next scans are due beginning of Sept. Not ordered/scheduled yet, so I definitely have time to get this figured out and set them up elsewhere if that is what is going to happen.
RK2020- The thing is I have been having all my labs done at our local hospital outpatient lab. They go to my Patient Portal and I can monitor trends or look up a date and see result. I guess I will need to move to a commercial lab-- Lab Corp for example. ???? Have to look into that too. I do want the Missouri doc to be the primary. I like how she is thinking--- include me in the decision making, ok with me reading and researching, option of tweeking Ibrance schedule and not just moving to the next therapy.
BevJen- 1. Do I need Port? I have asked before about removal and was told NO. May need in future, working good with no problem, and if they are ok not usually taken out "just because". 2. Ovaries-- I have thought about removing them. I am almost 50 years old. I am not going to have children. And it would guarantee menopausal status. But surgery??!!! My counts. COVID in the area. Recovery. Anesthesia risks. Seems drastic. 3. Big issue of future-- Yes. I worry about getting sicker and having to travel. I don't know what to say. I am going to be alone as I get sicker so It Is What It Is.
Thereishope- Love your screen name!!! Sorry for the low number this time. I would think they would go down to 75mg next for you. I went to 75mg early on. So nowhere else to go but to tweek schedule for me.
Julia- I have not checked American Cancer Society yet. With Covid, riding with a stranger seems risky. I think I would ask friends/church folks first.
Rosie- The 2nd opinion MO said she would send a note to current MO with recommendations of tumor board, but that current MO has the right to follow them or not---just recommendations. *****Bigger picture for me is that current MO said I needed to quit reading/researching and let her lead. NOT HAPPENING. Not me. I want to be an active part in my treatment plan. New MO said she was definitely ok with her patients being active and suggesting things to her. And how would it look if when my current MO and I have a disagreement, I run to 2nd opinion MO and get the answer I was seeking???? Rural area, so not much in the way of other MO's in our area. More of same. Small town MO's in small offices. Nothing academic or clinical trial areas until you go to big city--- St. Louis closest for me.
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Hi, all! I haven't been on as much lately - summer is crazy, we sold our shore house and have been building a new one. Lots of stress!
Just wanted to hop on to update... had a PET scan last week, and just got results - No Evidence of Disease!! That's 6 consecutive NED's (every six months), since starting Ibrance in August 2017.
Feeling blessed, and wanted to let any newbies know that Ibrance can be an amazing drug!!
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aprilgirl1, thank you for letting me know your story. I hope you’re feeling better after treatment. Congrats on NEAD.
After my first CT scan, they said no evidence of metastatic disease. I was happy. Then I realized the cancer I have doesn’t show on any scans, so that wasn’t true. I have to rely on something to let me know if things are going south, so I definitely look closer at my bloodwork, not just the tumor markers. I’ve had anemia since before I was diagnosed, and it hasn’t moved much, so we don’t worry about it at this point.
I do feel treatment is slowing the process down a little bit, so hopefully it keeps working for both of us.
I appreciate you responding.
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Ciaci- Woohoo on NED!!!!! Bless you. Hope you have many more of those kind of results!!!!!
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Hello, Ibrance Dancers!
I had a video visit today with my MO, and I am staying on Ibrance for now. This is the FIRST TIME that my MO said --" I'd like to push this treatment as long as we can." I think I posted that my tumor markers have been a bit all over the place (certainly not normal, but staying within a certain range) and today she declared that she sees them as "stable" since they are lingering around the same place, generally. She actually is putting off my next CT until at least late September/early October, which will be 4 months for me.
Additionally, my center has a newly constituted tumor board that focuses on genomic findings, from what she described. She asked them to review my records, and come up with a recommendation for further treatment for me. They recommended staying on Ibrance for now; then to Piqray (I have the PIK3CA mutation); then to Keytruda (or other checkpoint inhibitor, but she mentioned Keytruda); then to neratinib or that trial, if it's still going on (related to my ERBB2 mutation). I was pleased with this recommendation, and the fact that she is embracing it, because we have been kicking around a lot of this stuff, and I think that all of these things could be helpful in my case.
Finally, and this really came out of the blue, we started talking about meditation classes that I've just started taking online. She asked me if I was interested in seeing an integrative oncologist who is just transferring to the main cancer center from a satellite location. I was really excited, because I think it's valuable info -- this is a trained MD, but she also has a lot of knowledge about integrative practice. So my MO is going to put us in touch.
All in all, it was a great appointment, and I think we are learning to "hear" each other more and more. Especially happy to be staying again on Ibrance.
Ciaci, great on the NED! We all would like to get there, I'm sure, but wonderful that Ibrance is working so well for you.
Aprilgirl, I don't know about when TMs are predictive, but they seem to show something with me and I'm ILC.
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I remember when Pfizer said not to put the capsules in a pill box.
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Ciaci,
Congrats on still being NED! You've really done well on I\L.
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I have a bone biopsy scheduled for August 6th, and I was wondering if anyone here has had one while on Ibrance. I’ll be talking to my doctor on Monday to see what she says about being on it during a bone biopsy. My numbers are always low. Last month I was at .86, but she said to go ahead. I’m on my week off now, so I would be in the middle of my second week if I was okayed to start on this coming Monday, or if I had to hold one week, I would start back on August 3rd.
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BevJen, I’m glad to hear you had such a positive appointment. I think knowing your long term plan is helpful. I haven’t asked about mine yet but will do that with my new MO at some point. Like all of us, I’m hoping the I/L keeps working. I hope you’ll let us know more about the Integrative Oncologist when you meet him or her.
Ciaci, Congrats on NED for all those scans! Great news!
Jaycee, I’m just starting the tablets this week. I really liked using the pill caddy. 🙁. And hearing that the blister packs are a pain doesn’t help my attitude. I’d stay on capsules if I could.
Denny, Sorry you’re moving on from Ibrance. Best wishes for you to knock back the progression.
Candy, I see how current MO is a lousy fit now. I hope you can find a way to bypass some of the long trips but switch to the new MO.
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candy678 - I'm sorry that you are running into barriers trying to find/setup a different clinic/DR, and hope you find something that works for you.
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