Ibrance (Palbociclib)
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Twyse,
Welcome!! My sister lives in Derby, is that anywhere near you?
I never heard of those shots, and the low ANC counts are not dangerous, we are not immunosuppressed,. If need be take a real break from Ibrance and don't go back on till the numbers are truly recovered. CDK4,6 inhibitors just arrest the development of those cells, they don't kill them off the way chemo does, it is a totally different deal and that normally would not warrant getting any shots. But the scans are far more important, and if you have just a few spots that are lighting up you could look into radiating them. That worked for me and let me squeak out more time on the I/F. It sounds like a second opinion at a major cancer center, if possible, and for sure by somebody who specializes in breast cancer, would be the most important thing to do at this juncture?
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Cure-ious
Derby is not far. Probably 40ish miles south of me.
It's interesting that you say we are not immunosuppressed. Even if I have a pretty low WBC? I've always thought I was. Not that I ever get sick. Knock on wood. I did get radiation on a couple of spots on my right hip as it was hurting pretty bad. That made a big difference. As far as my hips, I do better if I keep moving. I do get small aches in my spine though when I'm on my feet too long. Nothing I can't tolerate yet. I've struggled with the idea of going anywhere else for treatment. I really like where I'm at. It seems to me he has been following the same treatment plan that I see most of the others here are following. I have not had any surgeries, and I haven't noticed very many others that have not had surgeries. So I wonder about that.
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Candy was having this same issue, and an MO who was going down the WBC boost route as well. She chose to find a new MO who was a bit more creative in thought and dosing schedule. Are you still on 21 days on 7 off? A few ladies are doing well on some alternate dosing schedules such as 5 on 2 off, or dropping down to 75mg.
Hopefully Candy will be by soon to share her experience.
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Twyse- I am the one that Sondra is talking about.
Some back story. I have been on Ibrance/ Letrozole for 3 years. My ANC has always been kind of low. First couple of years ANC was 1000-1200 (1.0-1.2) when did blood test the day before starting the next cycle. Since this May they are not recovering very well. May was 800 (0.8). My MO was very concerned. She said the Ibance is cumulative and I was getting toxic. She said to hold Ibrance and come in for a shot of Zarxio--- biosimilar drug to Neulasta. I have been reading on here and researching, and had read here and elsewhere that those drugs are not warranted with CDK's. Yes, as Cure-ious said, with CDK's the cells are not killed off, but asleep. I also read about other options for the low counts--- a clinical trial at Washington University in St. Louis for an alternate dosing schedule of Ibrance. On 5 days/ off 2 days continuous (no week off). Also, I wondered about changing to another CDK like Verzenio that has lower percentage of neutropenia. I asked my MO and she shot down every suggestion. The last straw was when she said I needed to quit reading and just do as she says. So, I found another MO.
I went to the new MO and gave her my suggestions. She was much more open and said we would try the 5/2 Ibrance scheduling and the possibility of changing to another CDK is still on the table. I am currently trying the 5/2 dosing -- will post how that goes, so keep following me.
My RBC's and platelets are ok. It is my WBC's and ANC.
My new MO is pretty sure it is the Ibrance that is causing the neutropenia, but she did say a bone marrow biopsy may need to be done sometime. Just so we are not missing something.
I know Cure-ious said that we are not considered immunocompromised since our cells are "asleep" and not killed out like with IV chemo use. But, I tend to disagree about that. I live with a WBC of 1.0-2.0 and a ANC of 800-900. That is low. Even with the usual dosing of Ibrance and the week off, my counts never recovered. Before Covid, my old MO said to call her if I got sick and to stay aware of crowds, people who were ill, etc. I have not been ill thru the 3 years on Ibrance, but I stay away from illness and religiously wash my hands. I wore a mask before Covid--during cold/flu season.
What dose are you on? I am on 75mg. So no going down on the mg. And I want to continue Ibrance as long as I can---my scans are stable so far.
Hope this helps. Any questions, just ask.
Edited to add- I reread your post. I see your TM's are going up and you have had changes in PET. So... are you progressing, and moving from Ibrance soon due to progression? My scans have been stable, so my issue was the tolerating Ibrance/neutropenia issues only.
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Just adding that the big CDK4,6 inhibitor studies have all shown no significant increased infection rates despite the (very common) lowered ANCs, so what cells are there are functional. That's what indicates the group is not immunosuppressed, their white cells tank but they are not at increased risk of infections, unlike chemo. My numbers were in the 500-600s often when I was on the 125mg, though I never got sick, and the numbers are fine now on the 100 mg level (plus less fatigue) but it is interesting that you and Candy are both having this problem kick in at year 3+ and its more resistant to taking a small break. Low counts caused a lot of people to drop Ibrance in a recent trial where they were testing if it would reduce recurrence when added to AI for early stage breast cancer patients. The trial failed because too many people went off of the drug, due to not wanting to deal with their neutrophil counts going low and/or the fatigue. A great drug is no good if people won't take it. So that trial failed for Ibrance/Pfizer.
Interestingly, a parallel trial asking the same question for Verzenio showed a clear benefit and worked well, and the makers hope that this gives them an edge over Ibrance in the market. Verzenio does not have as bad of a problem with lowered neutrophils, and is a stronger inhibitor that can work on its own even in the absence of AIs, so it would be another option for you, however of course it comes with its own set of challenges.
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Cure-ious- Do not get me wrong, I highly respect your input. You are wwaayy smarter than me. And I too have read that we do not seem to be more immune compromised even with the low counts. But, I do wonder if that is really correct and do not want to risk testing the theory. And you said "what cells are there are functional". But we with low counts do not have as many cells as we are supposed to have to fight any illness. The poor buggers are few and need to be mighty.
I have also read that low white counts do not cause the fatigue. That would be low red counts and hemoglobin counts. But I disagree with that too. My RBC and Hgb are just SLIGHTLY low, but the fatigue is huge. I think that our bodies are not made to be walking around with such low white counts. Not normal. Even if the cells are just arrested and not dead.
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Candy,
Thanks so much for all of your information. It looks like we've been on the same path for about the same amount of time. I am curious. My MO did not encourage surgery once he found that I was stage IV. He certainly would of supported me if I had made that choice. I don't think I have found anyone else here that has not had surgery. It makes me wonder if that was the right decision. He stated that there was no benefit to surgery once it is outside of the breast?
So, your 5/2 schedule is that you take Ibrance for five days off 2. I will ask about that. That sounds like a possible option. I will be anxious to see how that works for you. I am still taking 100mg as of now. Tomorrow will be my last pill on this cycle and lab work. I'm suspecting he will want to treat me again with those shots. I was barely above 1000 last week.
I'm not sure what his thoughts are on the next steps. I was unable to see him for my last appointment due to covid concerns. We talked a bit on the phone but he wanted to wait to see how my mammogram and ultrasound came out. I haven't heard from him on those yet. I will admit that I am not too involved in my treatment choices. Just choosing to live my life the best I can for as long as I have. Trusting him to make the best decisions. I'm a trusting person. But I will talk about the 5/2 schedule and question about getting these shots.
Cure-ious
Thanks again for your information. Have you been on Ibrance since 2015?
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yep, was diagnosed just a few months after FDA approved the drug, which was based on great data coming just from phase 2. Lucky that I didn't have to wait for their phase 3 trial to be completed. Several of us here are in this general timeframe
My point about radiation was nothing to do with pain. At 3.5 years I had slight progression in a couple of areas, but got the RO to radiate them and its allowed me to get a bit more time.
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Twyse- By surgery you mean mastectomy? I had mine done before we knew of the mets. I have read that most MO's do not advise mastectomy after you know of the metastasis. The risks of surgery when the horse is already out of the barn, so to speak.
Ask about moving to 75mg-- lowest dose. That, in itself, may help your counts. Also, I am posting the link for the 5/2 trial. I was told by my MO that the trial is over and they are publishing the results in Dec at the large cancer conference in Texas. --- I am actually now going to the cancer center that did this study.
https://clinicaltrials.gov/ct2/show/NCT03007979?co...
Keep us informed of what you find out and how your counts continue.
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Had to post------ ANC 1300 (1.3) today. So 900 mid cycle and now 1300 end of cycle/beginning of next cycle. WOOHOO!!!!!!! On to cycle 34 tomorrow with the 5/2 dosing schedule. I see MO Monday with a CT scan due. So... if scans still stable, we may have, hopefully, fixed the low counts. I will post more after MO appointment. Praise the Lord.
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Wonderful, Candy!!! You got this...
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Awesome news, Candy!! 👍
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Candy,
Responded on the other thread. Great news. And thanks for posting the clinical trial info -- I don't know which way I will be going next, but if I'm going to stay on Ibrance, I'm going to ask for this schedule. I think it makes more sense all the way around.
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Great news Candy-so happy for you
Twyse there are other people on here that have special dosing for instance someone does every other week and other variations. The dosage has also been reduced to 75 for some and miraculously there are some still on 125 three weeks on 1 off. My ANC and other blood counts were low enough twice in over 40 cycles for my doctor to give me neulasta. But only when they were low for 3 consecutive months- after dose was already lowered to 100 then I received a neulasta shot and when I went back the next day it was fine. I haven’t taken any long breaks except during radiation I had an extra week off.
I really like the Candy schedule 5-2 bc it’s new and worked for her immediately. Ibrance is more gentle than other treatments for many of us so we try to do whatever we can to keep this regimen and our QOL.
Tanya
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Twyse, I was diagnosed de novo Stage IV. I did not have a mastectomy. I was told the reason for a mastectomy is so it doesn’t spread, so there was really no point. I was perfectly fine with that. The thing also is a primary has never been found in my breast.
I may also ask to try the 5/2, as I am off for an extra week for the third time since starting treatment. I have never had a shot to raise my numbers.
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Candy, question about the on 5 off 2. I usually had my blood draw on the Monday I am supposed to start back up, so my blood draws have been every four weeks on a Monday. Are you getting blood draws on the same day once a month or how is that working? I get an infusion once a month at the same time, so I would hate to go twice. I’m so glad it’s working so far for you, and I would really like to try it.
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Great news Candy. I am not as smart as you gals but just giving you my situation. Started May 2016 Ibrance at 125 lasted about 3 mo and then 100 and then 75. For the last 3 yrs my ANC hovers around 1.0 - 1.3. Recently it was 1.8. Have no idea what I did to get that number. And for the last 3 yrs I am on for 21 days and off for 14 days. Still on Letrosole. I could go back and count the cycles but I just say been on over 4 yrs. Only one time did I have to wait another week because of being low.0
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great news Candy
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Great news Candy! I hope those counts continue for you.
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congratulations Candy on great news! 👍🏻👍🏻👍🏻 and thanks for sharing your experience.
Moderator, it is good if the link of 5/2 trial pinned on the introduction of this thread, as an option. As all of us face low counts, so would be helpful this reference to be seeable anytime. Thanks
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Thanks guys. Now I have my scans on Monday, so if progression then all this tweeking Ibrance is done. Hoping I am still stable and can continue on Ibrance.
KBL- The way I have been doing the schedule is start cycle on a Thursday. Take Ibrance Thurs, Fri, Sat, Sun, Mon. Stop Tues and Wed. Go to lab on Wed (I went this morning about 11am so the MO office had time to get results and notify me before the end of their workday). I did the CBC the Wednesday before starting week 3--mid cycle. And then CBC today, Wednesday, before starting next cycle. My MO ordered the CBC's every 2 weeks, standing order. So I keep track of the timing and go to lab when due and tell them I have a standing order on file. I am doing my labs locally, so a 5 minute drive for me to lab versus 2 hour drive (one way) to my new MO. So easy peasy for my labs.
I am seeing my MO on Monday. I am going to ask if we can keep doing every 2 week CBC for the next month's cycle. Just to be sure numbers are staying up. Then maybe go to every 4 weeks, before each cycle.
For those that want to ask their MO's to change to this. I asked my MO about how the clinical trial went, any preliminary report. She said the trial is over (even though the website doesn't say that) and that it will be published in Dec at the SABCS and she could not divulge the results. So have your MO's look for those results. You could mention the trial though and see if your MO's would be willing to try it before results in/FDA approval. My old MO said she could not (?) order the med that way because FDA has not approved yet.
Glad I can give info to help others.
Edited to add- I was not a participant in the trial. We did not do the testing the trial mentions. All we did was change my dosing to the on 5/off 2 schedule. It may have helped my blood numbers, but we do not know yet if it affected the PFS or if it was still effective on keeping the cancer at bay.
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Wonderful new Candy! HUGS!
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Group hug.
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Cure-ious---You will know. SABCS is virtual this year. Can we attend? Or just for health professionals? Would like to see what is discussed--esp this 5/2 Ibrance schedule trial. How do we learn the info?
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Thank you, Candy. I’ll keep you posted when I ask doc. I have to go Monday to retest since I was below this month and had to wait a week. I will read up on trial info.
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One more question, Candy. You stayed on 75 mg, correct? Thank you.
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Candy, great news! So happy for you ! It's great to know that this 5/2 schedule is working and could be an option for us.
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Candy, I'm not sure, last year they put the abstracts out early online, but now with these virtual conferences they may be keeping them locked up to provide them to their paying customers? its all they can offer, early access to abstracts and watch the talks on zoom. But we will see, they are a great meeting and I'm sure they know there is a ton of interest at the patient level!
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Candy - I am so happy to see your counts are up this month on this new regimen! If you had still been faffing about with that old MO and the bon injections who knows where you would be. Probably in a lot more pain and tired. The shift was definitely worth it!
Twyse - there is a Stage IV de novo thread where the de novo ladies chat about their treatments - one lady over there did have surgery on the primary earlier this year that wasn't related to missed mets. I think the thread is a page or two back.
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KBL- Yes, on 75mg. Been on 75mg since early on with Ibrance.
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