Ibrance (Palbociclib)
Comments
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Piggy99- a similar thing happened to me last week. I was away at a conference, very busy, and didn't have time to think much about cancer. I had a better outlook and felt more like myself as well. I think that says something important to me.
One of the speakers at the conference said "don't quit living before you die". That made me stop and think, too.
Hugs and Prayers for everyone - have a good day!
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513/Marilyn,
I will jump in and second Joyner's comment; you're in a bind many of us expect to see at some point- evidence of further progression in the bone, what to do? Of course, you want to be sure its real, but let's presume that it is. Your MO says Aromasin/Affinitor, and from the(very little) I have discussed this with my MO, I think she would recommend the same. But is that the best? I don't see why- in the numbers from the older trial of the AA combo, the average time to progression was like 10 months, whereas in the more recent Faslodex-Ibrance combo, the average time to progression was just under two years. (with the big caveat that the people in that trial had not been exposed previously to Ibrance, but resistance to Ibrance is rare so it may well apply directly the same to us). The issue is why has the cancer progressed (if it has)? If it is because the estrogen receptor has developed a mutation (ESR mutation), then the aromasin part of your combo is not going to work. Those mutations cause the estrogen receptor to be permanently active, pushing on the cell growth genes, whether or not it sees any estrogen. AIs like aromasin inhibit production of estrogen, so they won't have any effect if that is the cause of the cancer progression. In other cases of resistance, what can happen is the mTOR/PI3K pathway gets turned on, and that is now driving the cancer, it does not care about estrogen or the estrogen receptor. If that is the case, you need an inhibitor of mTOR/PI3K pathway, and the only approved one is Affinitor. When affinitor blocks the mTOR/PI3K pathway, then the cancer becomes sensitive to estrogen again, and the aromasin inhibitor would work.
So, is there any intention, or is it possible, to biopsy the new cancer growing in the bones to find our what is the reason for the resistance? If for whatever reason they don't normally do that, then I would opt for the safer bet to move onto Faslodex injections, so that estrogen receptor is degraded- that will inhibit it, regardless of whether it is estrogen dependent or mutated and estrogen-independent. Then, the question becomes, what to add to your Faslodex? Ideally, would be to continue with Ibrance or some other CDK4,6 inhibitor, because we now know it is rare for resistance to these drugs to appear, so presumably you are still going to benefit from that drug. It would be better still to add in a little affinitor or some other drug in that class to the mix. although that seems the most logical, there don't seem to be many clinical trials in that space as yet?0 -
My neutrophils were only 0.9 yesterday. My oncologist gave me permission to start Cycle 12 anyway but she is concerned. We discussed going to a continuous 5 days on, 2 days off schedule. Has anyone here tried this, and if so how has your experience been? Last weeks scans were all good, to the tetrazole/Ibrance combo is working, it is just that my neutrophils struggle to reach 1.0.
Hobbes
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Hobbes, I know someone who is trying this and after one month her counts have improved slightly, as well, her tumor markers, have fallen slightly. She is possibly experiencing less fatigue, but its too early to tell. She will be tested again in another 30 days.
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I have a question for Ibrance users: I am on cycle 19.
On Day 10, my ANC (absolute neutrophil count) was 0.8. My MO ordered a recheck 3 days later to see if I needed a break. We both assumed the ANC would continue to decline. But on day 13, my ANC was 1.2 so I continued with my usual dose.
Is that strange?
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Hi Cure-eous and 513/Marilyn,
There is a clinical trial of Ribociclib Everolimus and Examestane. I tried to get on it at MD Anderson but the last space there was filled the day before I asked. It is still available at other institutions. It looks very promising.
https://clinicaltrials.gov/ct2/show/NCT02732119
Mary
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SandiBeach, My ANC bounces around in what seems to be a random fashion. During my first cycle of Ibrance MO looked at my results, shook his head, and told me that nothing about Ibrance surprised him anymore. My ANC was 0.6 on day 14, and up to 0.8 on day 21. Don't be surprised if your count goes down again, maybe even lower than .8. Mine tanked to 0.4 on day 28. Of course, yours could go up!
Hugs and prayers from, Lynne
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SandiBeach - my neutrophils drop hugely by day 28 when I get them tested: 1st cycle .3 (critically low) - it took 3 weeks off to get back to just 1.0! 2nd cycle .4 (still critically low) and 2 weeks to get to .9 and they let me start cycle 3. It then took 2 weeks off to get to exactly 1.0 - here's hoping they are higher after cycle 4 is done! I feel great apart from fatigue, and random nausea a few days after I finish the 21 day cycle. I see a new MO mid July the day after my next bone and ct scans so I will see what he thinks is best - maybe drop to 100 instead of 125? I will be reading up on the benefits of that for sure!
Best of health everyone!!
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Has anyone else noticed a real sensitivity to heat while on Ibrance? The summer heat is bothering me way more than it ever gas
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Janky, I am very surprised that your MO continued you at 125 mg after your ANC was so low. I have attached some tables from the Ibrance site. Please note that ANC<=.500 is considered Grade 4 neutropenia. A dose reduction is recommended for anyone with grade 4. As you can see, the recommendation is to withhold Ibrance until ANC returns to at least grade 2 which is 1.00 or higher. Once that level has been reached, Ibrance should be resumed at the next lower level. You will see a difference at a lower dose.
2.2 Dose Modification
The recommended dose modifications for adverse reactions are listed in Tables 1, 2, and 3.
Table 1. Recommended Dose Modification for Adverse Reactions
Dose Level Dose - *
- If further dose reduction below 75 mg/day is required, discontinue.
Recommended starting dose 125 mg/day First dose reduction 100 mg/day Second dose reduction 75 mg/day* Table 2. Dose Modification and Management – Hematologic Toxicities*
Monitor complete blood counts prior to the start of IBRANCE therapy and at the beginning of each cycle, as well as on Day 15 of the first 2 cycles, and as clinically indicated.
For patients who experience a maximum of Grade 1 or 2 neutropenia in the first 6 cycles, monitor complete blood counts for subsequent cycles every 3 months, prior to the beginning of a cycle and as clinically indicated.CTCAE Grade Dose Modifications Grade 1 or 2 No dose adjustment is required. Grade 3 Day 1 of cycle:
Withhold IBRANCE, repeat complete blood count monitoring within 1 week. When recovered to Grade ≤2, start the next cycle at the same dose.
Day 15 of first 2 cycles:
If Grade 3 on Day 15, continue IBRANCE at current dose to complete cycle and repeat complete blood count on Day 22.
If Grade 4 on Day 22, see Grade 4 dose modification guidelines below.
Consider dose reduction in cases of prolonged (>1 week) recovery from Grade 3 neutropenia or recurrent Grade 3 neutropenia on Day 1 of subsequent cycles.Grade 3 neutropenia†with fever ≥38.5 ºC and/or infection At any time:
Withhold IBRANCE until recovery to Grade ≤2.
Resume at the next lower dose.Grade 4 At any time:
Withhold IBRANCE until recovery to Grade ≤2.
Resume at the next lower dose.Grading according to CTCAE 4.0.
CTCAE=Common Terminology Criteria for Adverse Events; LLN=lower limit of normal.0 -
Gracie-Yes. I don't know if it is the Letrozole or Ibrance, but now I sweat so much more and find I need to be careful exercising outdoors when it is hot. I also turn red which never used to happen. Never was like that before. I still love the heat but there seems to be a difference in how my body adjusts to it.
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Hi all, I got my pet scan results yesterday and ibrance and I are done dancing! The best part for me is that I will be off of the letrozole too! I'm hoping that by going off the letrozole my hot flashes and night sweats will get a little less and a little easier to bear.
I will be starting Madame X as soon as it gets here! I have been reading up on the Xeloda thread so I hope I'm prepared for whatever comes down the road!
Hi Gracie I'm so happy to see you here! I've been really worried about you! I hope things are going a little bit better for you how was your pet scan results? And yes the ibrance and letrozole definitely react not well to heat. I am hoping now that I am going off of both that summer will get just a little bit easier for me here.
Hugs and prayers all, Claudia
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Bigbhome, I have to tell you that I have never seen anyone so happy to get scan results that show they need to change treatment! I assume you have experienced progression. Hmmm, if that is the case, the happy dance hardly seems appropriate, yet you almost seem giddy about moving on. Well, my friend, you are one tough woman, but that is no surprise to me. I hope that Xeloda knocks those nasty cells into oblivion. May the results be spectacular and the side effects minimal.
Hugs and prayers from, Lynne
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Gracie: I also cannot bear the heat under I/L. I think that the Letrozole is causing the problems, because the regular hot flashes and sweats seem to become worse with heat. I get a flash/sweat every 15-30 min, which is really embarrassing at work to be dripping all over. Having gained about 45 pounds since dx (everyone has a different way of coping with dx, mine unfortunately is eating) does not help either.
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Gracie, my body has changed since I/F, I can't tolerate too hot or too cold and ,yes, I sweat a lot at night. But we can handle this, it could be worst
Love Elena
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Gracie YES. I have never sweated like this. One continuous hot flash. At night, I confess I turn AC down to 56!
Bigbhome. Will you be posting on Madame X thread?
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Cure-ious. I’m new to this site and I too have been told that my recent scan shows evidence of probable progression to left ovary. ILC Mets diagnosed to right ovary and peritoneum 2 years ago. Er+ HER - as original diagnosis way back in 1998. Been on a clinical trial here in the U.K. and on cycle 28 of Ibrance +Faslodex.
Onc wants to try A+A next based on his belief that I’m resistant to the AI letrazole ( as I’ve had Arimadex in the past but not for 7 year so). I had no treatment at all prior to my mets diagnosis for 5 years. I don’t feel this is conclusive proof of resistance and would prefer to try Letrazole or Arimadex again before the A/A suggested. From your information I can see that a biopsy would be a good idea and will push for that.
My current thinking is that I am well and living normally so it may be worthwhile me requesting to stay on the Ibrance ( albeit off the trial) but take it with Letrazole instead for sAy 3 months before getting rescanned to see how that combo is doing. Do you or others think there is any merit in my quest to do this? I am reluctant to just give up on the Ibrance if there could be benefit to staying the course as I have found it a very good treatment so far.
All comments will be gratefully received. Kathy
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MaryLark, Thanks, that phase 1/2 Trinit-1 trial should be about wrapping up, athough they say they are still recruiting.
Here is an interesting discussion about everolimus and says they have seen some good results on TRINIT-1 (in 2017)
https://www.onclive.com/peer-exchange/questions-an...
how can we choose the best secondline without data on best progression free survival for these various options?
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Cure-ious. I’m new to this site and seem to have some difficulty posting so I apologise if this appears more than once. I too find myself in the position of having probable progression with a diffuse soft tissue mass now showing on left ovary. Mets 2 years ago to right ovary and peritoneum. ILC ER+ HER- as original diagnosis back in 98. On cycle 28 of Ibrance/Faslodex ( cinical trial here in U.K. randomly given Faslodex as opposed to Letrazole).
Onc now wants to move onto A/a combo based on his belief that Iam resistant to Letrazole as I have had Arimadex in the past . I have never used this drug for secondaries and indeed have not had an AI for 7 years. No treatment at all for 5 years prior to my mets diagnosis 2 years ago. I cannot see that there is any conclusive proof that I am resistant as yet but will be looking to undertake a biopsy to clarify this if possible .
My preference would be to stay on the Ibrance (albeit off the trial) and take it with Letrazole for say 3 months before being scanned again to see how it was doing. I am well and living normally so don’t want to rush coming off Ibrance if there is any possibility of it continuing to work for me. Do you or anybody else think there is merit in my requesting this?
Any comments will be gratefully received.
Kathy
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50's girl, not euphoric, just glad to see what life will be like off the hormonal. Progression is scary, but I have known for awhile so I have had time to adjust. Remember that I said Dh took priority for now. I have been in a holding pattern for a couple of months.
Claudia
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50sgirl - I do have to wait till they go back to 1.0 (except the 1 time .9) and I am considered Grade 2 neutropenia, which I only found out very recently
I have 1 more week left on cycle 4, as I had to stop for 1 week to take antiobiotics and neuts, after 4 days on Ibrance, were .6 . This go around I am trying a Reishi mushroom supplement and lots of greens - I guess I'll know in 2 weeks. I am looking forward to meeting my new MO in July. I will check those charts above, thank you!!0 -
Janky & 50'sgirls - when your ANC is low do you have shortness of breath? I had bloodwork done today after one week on Ibrance. Is the WBC and ANC the same thing? There was some question on to whether I should continue with the Ibrance cycle, or wait. Didn't see the doctor, actually was just there for the Faslodex shots. I've never seen a copy of my CBC. I'm only told what the WBC # is- like today it was 1.7. I was able to continue the Ibrance cycle as the nurse told me my other counts were good. I only have the shortness of breath whenever I exert myself to much. Most of the time I can breathe with no problems. Before all this began, my GP thought I had anemia, and I guess I could still have that(?). Every little thing just worries me now. BTW - Bigbhome - pardon my ignorance but what is Madame X?
crissy
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Thanks ladies, I’m glad to know others are having the same things with the heat.
BigB, sorry to hear you are moving on to something else but I hope it works really really well for you. I don’t get my results on all my scans until Friday.
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Chrissy, when they take my blood at the cancer center I wait until most of the tests have been run before I see my doctor. He comes into the room with my chart which contains a print-out of all the numbers. Each is marked as to whether it's high or low. Before I leave the doctor makes a copy for me. Can that happen for you? They can also go back and print past months for you so you can compare. My clinic also has an online chart where you can look up all your test results. If yours has that, be sure to sign up.
Cdrug, I'm a believer in asking for what you want. Follow your heart on this and you'll never have regrets!
About heat sensitivity: I've had a terrible time with the heat since I had FAC chemo in 1994 and had to give up summer gardening. As for hot flashes, I recommend the Chillow from Amazon.com. It has cooling gel in it and fits inside your pillow case....no refrigeration involved....and is nice for those times flashes might interrupt your sleep.
Happy Wednesday, my friends! I'm celebrating this extra week off Ibrance (though I threw up yesterday and felt like pitching a little "not fair" fit!) and praying that any lingering cancer cells aren't noticing this new regimen at all!
PatG
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I got the results from my bone scan last week. It appears that my cancer is no longer stable. I will be seeing the neurosurgeon this coming Monday and apparently part of the discussion will be about possibly removing the entire T11 vertebrae. All scary stuff!
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Chrissy - I have been having shortness of breath, I think it is due to my very recently diagnosed COPD though
(another disease that is going nowhere fast though it is very minimal right now). WBC is white blood cell counts and ANC is Absolute Neutrophil Count - so they are different (and as stated above if you are able to access your results the levels are marked beside each test.PatgMc - I also always request copies of all my medical reports and Blood Work Results, either through the Cancer Center or my regular GP office.
Wishing everyone well!! Janky
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Janky, It is good that you no longer have critically low ANC, but I was surprised that you weren't given a lower dose after your first cycle. That is when you had grade 4 neutropenia, and the recommendation is to lower the dose. It sounds like you are doing okay.
Chrissy, Anemia can cause shortness of breath. I was severely anemic when I was diagnosed three years ago, and walking even a few feet caused exhaustion and shortness of breath. It sometimes takes quite a while for anemia to improve. As Pat and Janky suggested, you should ask for copies of your blood tests if they aren't't available on a patient portal.
Junior, I am sorry that your disease is no longer stable. Let us know how you make out at the neurosurgeon on Monday.
Bigbhome, I didn't really think you were happy about progression. I know you are just looking forward to ridding yourself of the SEs of your current treatment. I just wasn't sure how to react. I am happy that you will see relief, but not happy about the progression. I hope that you will find stability or even NED on madam x. I know that it was necessary to put your DH first for a while, and I am glad that you are now beginning to move forward with your treatment change.
Hugs and prayers from, Lynne
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The nurse in my oncologist's office in Montana always comes in before him and takes my vitals. She pulls up my labs on the computer so they are available for him when he comes. I cheat - I look at them before he gets in the room. I told him that last month and he nodded - he said he has lots of patients that do that. The labs are also posted on the patient portal usually the next day. When I was in Arizona I was told I could not have my lab results from the clinic and would need to get them from my oncologist's office (170 miles away). I pulled a "HIPPA" on them and told them I was entitled to my labs NOW. The doctor there met with me and reluctantly gave me the results. Sad you need to "pull rank" but I did and got my results. Sometimes you just need to know your rights and get unpleasant. Not something you should need to deal with when dealing with cancer too but sometimes it's just necessary. (Since we don't go to Arizona any more for the winter I don't deal with the folks there any more, which is nice).
Best wishes and happy thoughts to all. Good night.
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Bigbhome....perfect timing! My friend who progressed while on Ibrance has been stable for a year on Xeloda and her doctor told her today he's going to give her a 3 month break and see if she stays stable! I'm going to pray we hear the same thing from you next year. All things are possible!
JunieB, I had a friend who had a rib removed for MBC and she has never had any more bone mets! I think it's been 15 years! My daughter had a vertebrae removed and replaced with cadaver bone. It wasn't a cancer thing but she has no discomfort from it. I'm not sure of the number but it's in her neck. I know yours is further down but I pray that all goes just as well.
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PatgMc - Oh thank you so much for reminding my of Cadaver Allografts. I had forgotten about that, which is odd since I have one in my left hip from when I had to have it reconstructed for Chondrosarcoma in 2000.
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