Ibrance (Palbociclib)
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Hollili202: My MO gave me some info on Fulvestrant and Alpelisib. It all depends on a biopsy I have to have tommorow to see if there's a mutation. I've really appreciated this forum the last two years I've been on Ibrance and wish you all well and a long run on it. Side effectsceere very tolerable for me. I will check in to see how you're all doing. Thanks!
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Hollyli1202: I am so sorry about your scan report. They mentioned "possible" effusion. Maybe it will turn out to not be that. I feel for you though as you wait to know for sure what's going on. I really had hoped to be a long term Ibrance dancer too. Anxiously thinking about my lymph node biopsy tommorow. Will be thinking of you too.
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Good luck on your next treatment Elenas
Hollylii i would’ve looked at my chart too. This whole experience is scary. I hope your DH can give you some comfort and certainly the doctors will explain every thing so that it seems that there is hope. There is always hope. Sending a big hug your way. Are you allowed to have CBD and THC in Oregon? It works for me on a day like you’re having.
Tanya
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Thanks ladies. I got an email back from my MO. Appears I will be changing to a PARP olaparib. This is just not my year. I had hoped to get more time. I wonder if I would be able to come back to Ibrance. I also will have to have the fluid drained.
Pat, I hope not to see you on the PARP board.
Thanks for all your support. 😘
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Sorry this is so long- hope it is of interest to people
LoveFromPhilly told me about a podcast over a year ago which is very interesting called Breast Cancer Update Podcast- the moderator is Dr Neil Love. The latest podcast its about 2.5 hours and is from May 24th and is a review of CDK 4/6 inhibitors. It is a day long round table discussion with 6 breast cancer MO researchers who also see patients and 100 randomly selected MOs. They have been presented with several cases and asked their opinions. While there are technical parts it is very interesting. Below are a few of the highlights.
They mostly talked about ER+ H2 negative metastatic breast cancer patients.
20% of the patients in the general oncology practices were MBC, 80% of the patients they put on a CDK 4/6 were post menopausal and older than 50. 30% had never been on an endocrine therapy, the other 70% had been on endocrine therapy. More MOs are now using Abemaciclib and Ribociclib than in previous years, The efficacy of the 3 CDKs is very similar, they can't say for sure which one is best. There is a lot of discussion on continuous vs intermittent dosing with interesting arguments for each strategy. There are studies using low dose Ribociclib continuously. 2/3s of people on CDK had no side effects that required treatment and most people did not need a dose reduction due to side effects.
When you stop CDK inhibitors the tumor proliferates again (my TMs doubled between treatments) There is no rationale for continuing CDK after progression (on going studies to check this strategy)
CDKs as a first line drug in postmenopausal had a response rate of 45-60%. 30-40 % dose reduced due to neutropenia. Diarrhea with Abemaciclib started within a week and was managed well with meds or dose reduction and went away with time. 20-35% of people on Abemaciclib had neutropenia also. Hazard ratio for all 3 meds was .55.
Subsequent therapy PFS times are similar with the next treatment after CDK inhibitors. Progression is most common after 2 years from first line treatment. Time to need for chemo 17.6 when CDK part of treatment.
Chemo in ER+ as first line treatment instead of CDK : Taxane 40% response rate with PFS 8 months, Xeloda 25% response rate with duration of response 5 months, Eribulin response rate 11% with PFS of 4 months. So CDK the clear winner as a first line treatment!
There are some possible differences in who should be on which CDK (liver or CNS involvement, or shorter treatment free intervals) but, it is not conclusive yet. Molecular biomarkers besides ER+ not really found with the possible exception of high Cylin E tumors did not have a benefit from CDK.
TREATMENT after progression on CDK. If CDK and AI- 50/50 split by the panel of experts on 1)Fulvestrant alone vs Fulvestrant with Afinitor vs Afinitor plus aromasin (AA). the 100 MOs favored Fulvestrant alone (!) If on CDK plus fulvestrant the clear choice of the panel and the 100 MOs was AA. Five of 6 panelists would not continue CDK after progression outside of a trial. one half of MOs said that they have tried this strategy.
Pre-clinical data suggests cross resistance between the 3 CDKs. 2 trials are investigating that now. 1) Maintain trial- using fulvestrant and Ribo vs Fulvestrant plus placebo (can't really placebo a CDK with the neutropenia it seems) phase 2. 2) PACE study is phase 2 using Palbociclib plus fulvestrant vs fulvestrant alone.
Triplet studies (since PI3K pathway is involved in CDK resistance with over expression of PDK 1 part of the PI3K pathway between PI3K and mTor). 1) Trinity phase 1-2 Ribo plus Afinitor plus aromasin 2.) PACE has another arm using palbo plus Fulvestrant plus evalumab (sp- not sure of spelling). Also some immunotherapy triplets.
Lots more info on the podcast including Male breast cancer and H2+ patients and use of CDK
One other thing mentioned is that AA got a bad reputation due to the mouth sores- this has been mostly solved by using steroid mouth wash for the first 2 months. Hazard ratio of AA .45.
After progression on CDK it feels like a bit of a no man's land to me.
Have a lovely day- heat wave in the Bay Area!
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Holly- You are in my prayers. Keep us informed of how you are doing. PARP's may someday be in my future too, according to Foundation One study.
Nkb--- Thank you for the synopsis. Very interesting. How can I listen to that podcast?
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Yes, Nkb, thanks for all tge info
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candy- I just searched Breast cancer Update in the podcasts app on my iPhone not sure with android.
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Holly, I had a pleural effusion at the beginning that showed up because the cancer was there and wanted to be noticed. I had it drained (thoracentesis) six (yup, six) times. PM me if you want any info about the procedure. I ran into a woman who had several at my cancer center and she helped me a lot. That was invaluable to me at the time. Pleural effusions can mean many things. They never found any malignant cells in mine even though they kept looking. That can happen.
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Nkb- Thanks for the info. I should have posted -- I do not have a smart phone. I post here on my desktop computer. I know, sounds out of date. LOL. Can I watch/hear podcasts on computer, not smart phone???
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Nkb--- I Googled it and found podcasts. It said to subscribe, but I didn't and when I pressed Play it started podcast. Crazy question but is there a fee to listen to podcasts from your computer? Quit laughing out there....
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candy- no fee usually. Subscribe just means you will have it in your library and can access other episodes. You have a whole new world out there to explore!
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Nkb- Thanks for all the information, now I know there are lots of MOs just like mine who have no problem recommending Faslodex after I-F. Most of the recent trials are showing a 3-4 month PFS for the Faslodex alone arm- do they think that's OK?!
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cure-ious- I agree! The UCSF doc told me she would be thrilled if I got 7 months PFS on the AA. I am aiming for far more from these treatments! they were probably all around in the days when they had nothing to offer that worked.
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Cure-ious, what's wrong with 3-4 months? Just think what you could do in 3-4 months. Blink at least 3-4 times.
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candy - laughing out loud, I, too,am challenged and do not use my phone and use my computer for all the 'stuff'! I check in here and appreciate all the information and wisdom on this and a few other threads on this site! Just waiting to hear from my MO office to see if I can continue Ibrance tomorrow as my neutrophils are .9...not the magic 1.0m
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Hi Candy,
I take melatonin at night. That seems to help me get to sleep. The Naturopathic Physician said to take 20mg.
Disability - I was just approved. According to the Social security office just having stage 4 automatically qualified me. You shouldn't have a problem and if you do get a lawyer. Social Security will reject the application of you are still employed.
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Re using an attorney to push for SS Disability: Be sure to read the contract carefully. My friends have been surprised that they owed a hefty percentage of the back pay to the attorney.
Re starting a PARP Inhibitor or any other new treatment after Ibrance: Who knows whether this will be a magic bullet that will give you years of life after which something better could be there for you?! Also, should it stop working my oncologist says it would make sense to revisit Ibrance. We live in the most hopeful times for people with MBC and let's remember that God is very much still in the healing business!
I'm here praying for all of you while my family is at a rock concert. Once upon a time I would have been in the middle of all of it but I'm sitting here awaiting fried fish and onion rings from Red Robin. Home-delivered "Health food" and Forensic Files on TV....It's all good!
Good luck!
Love from PatGMc
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Hi,
I joined a couple of months ago but haven't posted too much but have read quite a few responses. I appreciate everyone's input and have learned a lot from the MBC community. I have been trying various things to combat fatigue e.g. Exercise, small meals. It helps, but some days just doesn't work.
I read somewhere that acupuncture may help. Has anyone tried that?
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Hellou, I use melatonin 100 mg each night, it has no side effect and I have very good sleep. I have read many papers on its usefullness for us. Such as: https://www.ncbi.nlm.nih.gov/pubmed/27017208
https://www.ncbi.nlm.nih.gov/pubmed/28420185
https://www.ncbi.nlm.nih.gov/pubmed/27017208
https://www.ncbi.nlm.nih.gov/pubmed/16647824
I think it helps me
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I use acupuncture for nausea pain and fatigue. She’s a doctor so she’s able to give me b-12 shots too. It works for me but doesn’t last as long as I wished it would. Some areas of pain flares can be controlled for weeks which means no pain meds
Tanya
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Hi all;
I have missed the last 10 days or so here and will have to take some time to update myself. Wishing you all the best with your scans and tests. I've been missing you all.
The last few weeks I have been absolutely exhausted....much more than normal. I would literally not be able to wake up until 10:30 or so in the morning and not be dressed etc. until noon. I got thinking about this more two days ago and wondered why. The only thing that has changed for me recently was I started taking turmeric. I didn't check with my MO. On researching it further I saw that one SE was thinning of the blood. I already take a mild blood thinner and of course theres the SE's from Ibrance etc. on the blood. So I stopped taking it and am starting to really notice a difference.
Love to you all,
Cathy
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My wife is about to start ibrance (in combination with Letrozole which she started last Friday). I hope it's OK if I ask a question on her behalf. She's scheduled to fly on week-long cross-country trip next week. Although she hasn't yet had any side effects from the Letrozole, she worried about the side effects from ibrance. How soon after initial dose did folks see side effects? She doesn't want to be stuck cross-country (by herself) having side effects. She can cancel the trip (but would prefer not to especially if it's likely to take a couple of weeks for ibrance side effects to begin). Thanks in advance (and my apologies if I'm breaking some protocol by asking on her behalf).
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BLMike, The main SE I had starting Ibrance was noticeable but not horrible fatigue, and that eased up a lot after a couple of cycles on the drug. For me, I wouldn't worry about a flight.
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Mike, you are perfectly welcome to ask questions on her behalf. Here's what I would do. I'd put off starting Ibrance until she gets back. So much safer. And it shouldn't make any difference. You could call and ask her MO and most would agree. (If you think the MO might not agree, don't call and ask.) Others on this thread might also agree but I am not the most compliant patient. But think about it. That would remove a huge stress from you both and she could enjoy the trip more. Glad to have you here. Most of us don't have bad side effects but it varies a lot. I wouldn't take the chance. My MO let me take off ten days to go to my son's wedding. Many here have taken time off for trips. Just wait a week.
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Regarding fatigue, I felt a lot better with the 5 day on, two day off schedule for Ibrance. However, once I got to my every-three-weeks bloodwork, it turns out that I still need to take a whole week off in order to get to the 1.0 ANC level necessary for starting the next cycle. So I guess I have to go back to taking the 21 days on, 7 days off schedule, because otherwise I will actually be getting less drug. I am still on125 mg, so someone taking a lower dose might be able to make the alternate schedule work. I also don't like giving the cancer a full week to rebound, but oh well..
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Mike, Welcome, I think you'll get some good info here.
My early side effects were some stomach queasiness and some lightheadedness when standing up. I ate little snacks to help the queasiness and drank a lot of water thinking maybe the lightheadedness might be dehydration. Both were only occasional and lasted maybe the first two cycles. Edited to add, I started both I and L together so I don’t know which caused my SEs
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Mike, I would agree with Jaycee to hold off. One or two weeks shouldn't make any difference.
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Mike-I have a different point of view. I was really sick with cancer at the time I started Ibrance. As soon as I started taking it, I felt better. There were no major side effects. For me, waiting two more weeks would not have been good. I think your wife should check in with her oncologist on this matter.
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Hey all. Good to hear all the discussion.
Nkb--- I will definitely be listening to the Podcasts. From my desktop computer, Hahaha.
Janky-- I would think you could start the Ibrance with the count of .9. My counts are either .9 or 1.0 and I don't delay the next cycle. Once a few months ago they were .8 and the MO didn't say to hold the Ibrance so I took it as scheduled.
Simone--- Congrats on approval for Disability. I am currently on leave from work, but I plan on applying for SSD after the leave/sick days are used up. I think I will just apply myself (not hire an attorney). Hope I am not making a mistake.
BLMike--- Chime in anytime with your questions. Your wife is lucky to have you in her corner. I agree with Jaycee--- put off starting the Ibrance until after the trip. I don't see a problem with waiting and then she can relax and enjoy the time.
So this morning I went to a meeting at my church. It is a Ladies Group that meets monthly. They discuss Fundraisers for Missions, have a devotion, and then a group prayer. As you can imagine, it is mainly retired/older women (meeting on a weekday mid morning). There was 8 in attendance. A couple of the women I have known for years, and the rest was fairly new to me. Of course, they all know I have cancer, but don't really understand MBC. Good meeting. Good discussion and devotion. I hope to be able to help with the upcoming planned fundraisers. Then they went around the table asking for prayer requests. When they came to me, I factually informed them of the cancer--- the not working right now, the depression spells, the treatments, and the every 3 month scans to watch for progression. One lady commented she had no idea that I was going through all that. Then it was the next woman's turn. She said " Well I don't think my concerns are anywhere near 'Candys' ". I felt bad. Everyones issues are just as important as mine. We all need to pray for each other. I know they care and it is nice to know they are praying for me. And I will pray for all of them. I posted a list of their prayer requests on my frig and plan on praying for the needs daily.
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