Ibrance (Palbociclib)
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I just started my 1st cycle of Ibrance. I have 3 days left of pills to take. I went for bloodwork today and within 2 hours the on-call ONC is calling me to stop the Ibrance because I have such low numbers.
I thought if you have low WBC numbers you have fatigue. Me, I have no fatigue what so ever and barely any other side effects. A day or 2 of very slight nausea and I eat a cracker or two and gone with the nausea. Is it normal to not have any fatigue when you WBC numbers are low. Just curious....
Kathy
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The presentation by the local oncologist this morning was very good. He is very smart and verbal. Nice, too. He did change his topic to talk about the recent research that got so many headlines about early stage breast cancer patients not needing to get chemo. He also did a shorter talk about CDK4/6 inhibitor drugs. Even though I take one of the drugs in question, I actually found the first topic more interesting. He explained how doctors have been using a certain range of oncotype scores to decide what patients get chemo. (I always wondered why that test was never done on me. He said that Her2+ never gets that test. I was Her2+ at first diagnosis.) The standard has always been that a score below 18 did not normally get chemo. A score above 31 did get chemo. The patients in between were up for discussion between the doctor and patient, considering other factors like age, general health, tumor size and I think he mentioned a few others. In the recent trial that got all the press, the study designers shifted the parameters of what oncotype scores determined who got chemo. The low shifted from 18 to 11 so patients with a score less than 11 did not normally get chemo. Patients with scores above 25 did get chemo. So the in between patients (11-25) were left up for discussion and a decision was made considering other factors between the doctor and the patient. At the end of this part of the presentation, someone asked why the researchers had changed the numbers from what doctors had always done. Dr. Padhi said that he and a number of others in attendance asked the same question. It seems they did not get a satisfactory answer, just vague statements about how some doctors shift these numbers around themselves. I had an answer but I kept my mouth shut. (You would have been proud of me. I kept my mouth shut except to ask why I had not had the oncotype test.) To me, the shift made it more likely that these researchers would garner the kind of headlines they got, thus making them more famous or more likely to get more research funding. (What a cynic I am.) You can't really complain about this study. The sample was almost 7000 women and they were followed for almost ten years. Quite a large undertaking.
The CDK4/6 part of the talk provided me with a lot of information I already knew and a few new drugs in the pipeline.. He listed each drug and the pathway they may block. There are several new pathways being studied like TROP2 and many new drugs in trials. He explained about the stages of trials and tried to justify the cost of the new drugs. I swear, I kept my mouth shut. A few people there joined in his justification of cost with the cost of research. I did not say one word. I did not say that the CEO of Pfizer makes $23 million a year. I didn't. Mostly because I had to get home to watch Germany play their World Cup game but still. I did good.
I'm pretty sure that no one in attendance but me is stage IV or taking Ibrance. Please excuse any scientific mistakes I may have made. I'm not as "scientific" as some of you. I did take notes.
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Sorry, I left out the crux of the study. The researchers compared chemo vs non chemo as to if and when the cancer recurred. That is when they found that the no chemo group did as well as the chemo group with the in between scores. Age seemed to be a factor with the in between scores, with younger women not doing as well. I wish I could explain it better.
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Jaycee really interesting. Thanks. Hard not not be cynical isn’t it? Though I suppose the single-minded drive for profit benefits us as the mad dash for the next big thing in MBC treatment might not be taking place if these drug companies didn’t see dollar signs everywhere despite our relatively small cohort.
Did any ofthe drugs in the pipelines for us sound truly promising? I was a little down after the ASCO releases that there wasn’t bigger news. Anything you heard sound really exciting?
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He had used up most of his time on the other research so spent very little time on the new drugs. Nothing specific or super-promising. He had a bunch of very nice PowerPoint slides and I wish I had copies. After trying to explain the other research, though, I understand why he thought the researchers were "cherry-picking." By shifting the in between range (the only group they studied) on the oncotype score down, the trial participants were less likely to recur anyway. Very clever.
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Neogirl, a lot of people don't have fatigue from low white count. I think it is strange that you were told to stop with just three pills left. Did they tell you how low it was?
Please don't let my changing the subject interrupt oldies answering newbies questions.
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Jaycee49, thank you reporting on your doctor's talk. It's good
to know "they" are working on it. I'm counting on it!
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Thanks Jaycee!! I'm always interested to hear of drugs in the pipeline- TROP2 is inhibited by IMMU-132, and was tested for triple negative MBC and then a more recent trial on ER-positive MBC and both showed benefit as a single agent.
Here is the ASCO 2018 abstract from Dr. Aditya Bardia, who is spearheading the trials on this agent- its good to hear about things becoming available for later down the line, and presumably they will be starting some combo trials at some point:
http://abstracts.asco.org/214/AbstView_214_221663....
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Goincrzy8 and neogirl, welcome. I hope you find comfort and knowledge here. For many of us, Ibrance is effective and quite tolerable. The first few months can be tough as your body adjusts to the new regimen. New/worsening aches and pains are typical, which we Ibrancers chalk up to healing. Mouth sores and digestive issues can pop up, too. But each can be dealt with and over time things settle down and you learn to work around the end-of-cycle fatigue.
I'm ending cycle 11 and labs are in the tank. ANC is 0.7 so I'm sure cycle 12 will be delayed. I'm also going from 125mg to 75mg. I've got a big Europe trip in August and MO and I came to an accord to reduce dosage for it. She wants me to pop back to 125mg after the trip, but we'll see. Neogirl, I don't know if it's the low whites or low reds, but I'm experiencing more SOB than fatigue. Also brain function is in the toilet, which I'm blaming on the bad labs-ha!
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Welcome to our newbies, you have found a great place to be!
neogirl - I, too, am surprised that you would be told to stop with only 3 pills left. Also by the timing of the bloodwork with only 3 days to go - did you get bw done midway during the cycle? Which brings up a question I have for all you knowledgeable sisters - I only have blood work checked 1 week after I finish the 21 day Ibrance cycle, never midway so I am wondering if the US protocols are different from the Canadian (I live in Canada)...
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Janky, for the first 6 cycles I had my blood work checked both midway and after the cycle. Once it was established that my numbers were somewhat consistently acceptable, I was switched to getting labs only during my week off. The exception is before any scans to check my calcium levels. I also got PET scans every 3 months for 18 months, but now get them every 6 months.
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IntoLight - thank you, as I posted I realized that most people are in bed, I see you are west coast too. Did you have neutrophil level issues? I always have to wait 2-3 weeks before mine are high enough to start next cycle...
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Janky, I have never had neutrophil issues and have been on 125 from the beginning. So I only get 1 week off every cycle. My onc says since I am able to do that she is reluctant to lower the dosage. She works hard to make sure I can get my labs and pills on time if I go out of town. She doesn't want me chained to that schedule.
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InfoLight - You are fortunate indeed, as low neuts have been a nuisance for scheduling so far...I am so hoping all is in order on Thursday so I can start cycle 5 Friday and stick to it!!
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neogirl, I too, wonder what your numbers were to make the doc pull those last three capsules! I've been fortunate to never have had an issue with low numbers, but my doc started me on 100mg (she always starts new people on 100, so she can adjust up or down, if necessary). For the first two months, she checked on Day 15 and Day 28, then only on Day 15. Now it's still on Day 15, but every 3 months (I'm on Cycle 12). My WBC count has never been under 3.8, and my ANC was 1.8 at its lowest. I asked my onc why she doesn't test at the end of the cycle, when it would be lower, and she said she's found that even if it dips to 1.0, as long as it rebounds, she's okay with it. And since my Day 15 numbers are consistent - actually within .1 every month - she's comfortable. I guess that stops me from obsessing about the numbers, too!
Hoping your doc is comfortable adjusting your schedule - we're on all kinds of schedules here!!
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Well done, Janet...on the notes and on biting your tongue!
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Hi Ladies,
My ONC wants my bloodwork checked every 3 weeks. Once when I start the Ibrance and then at the very end of cycle right before I see ONC. I was started on the 125. Im not sure of my numbers. She just called me yesterday and said they were very low and said to stop the pills til I see ONC on Tuesday. I will find out the numbers then.
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I have a question about letrozole and I'm putting it here because many of you are taking it along with your Ibrance like I am. My letrozole dose is 2.5 mg. The few side effects I have are from the letrozole I believe. Would a lower dose help? Is it even possible to have a lower dose and still be effective with the Ibrance? I won't see the onc for a few weeks and I'll ask him, but wanted your opinions first. Thanks.
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Muddling, I don't know of a lower dose of letrozole. My side effects are all from letrozole, too. The doctor I saw speak yesterday mentioned how so many women don't finish the five years of hormonal therapy, including the trial participants. He thinks that happens because of the side effect of joint and muscle pain. I beg to differ. My theory (I have many) is that women don't tell their doctors about the other main side effect of letrozole which is vaginal dryness that causes UTI's and painful sex. That, to me, is why so many women stop taking AI's and Tamoxifen. They are less likely to tell their doctors, especially males, about that side effect. They can just blame joint pain and not have to mention the other thing. Sorry for my digression, Muddling, but this is why I hate letrozole. They are solid pills and so could be cut in half. I'd check with MO before doing that. 2.5 mg just seems so SMALL but it seems to have a large effect on many. It also works.
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Thank you jaycee49. I'm only on the fourth cycle but I have had some of the joint and muscle pain but haven't yet noticed the vaginal side effect. Hmm.
The worst for me so far has been weight gain! This has happened in spite of eating much less and while adding as much exercise as my weak self can do. I've really been walking the last couple of weeks after five months of being a slug. Of all the MBC physical insults so far, gaining six pounds in a month is what is likely to break me if it continues. 6 pounds a month X many months or years...oh my goodness. As you remind me, it works and I really am glad. p.s. I won't change any dose without my doctor's approval. I've been surprisingly compliant through all this. My DH is amazed😊
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Good afternoon All
Just wanted to respond to thereishope for us I did scans a few weeks ago. I had the MRI on Monday with the contrast dye and the PET scan on Thursday. All of these dyes and nuclear sugar etc pass through our organs. I don't know if there is a protocol that doctors follow for it but I wouldn't do both in one day. The PET scan they tell you not to be around children or pregnant women for 24 hours afterward too.
I hope everyone is as well as can be. I appreciate you all. I'm not mad at you Jaycee for not opening your mouth but I think you must've literally bit your tongue or you love soccer. I hate the big pharmaceuticals for all of their bureacracy and not devoting much time to stage IV for whatever monetary reason. YUK
Jaycee I did take the Arimidex for 5 years after all my chemo. I didn't stop bc the cancer didn't come back. I also realize now that I didn't have nearly as many SE as you guys describe here.
I did something very dumb this cycle. I still had some 125 pills in my medicine drawer and it's in the same type of pill bottle and for five days I took the 125s instead of the 100s during this past cycle. I started feeling that monster fatigue and something made me read the label. I didn't mention it to my ONC. Anyone have any similar mishaps?
On my Ibrance off week woo hoo!!!
Tanya
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Thanks Tanya for your kind reply regarding scans. I am not sure if the dye from MRI and PET scan is the same or different for Bone scan and CAT scan. Either way, I think I should take your advise and request for the scans to be done on different days. Also didn’t realize I should be away from children after these scans. I do have a 9 year old daughter that I am concerned about and should protect as well.
I don’t think there is much harm in taking the meds by accident at a higher dose for those couple of days. As long as your blood work is okay and recovers before the next cycle, it should be fine. Enjoy the week off of the drug. I always feel more energetic during that week.
Muddingthrough - weight gain is an issue for me as well. It took me a few years to drop the weight gained from the first cancer occurrence 7 years ago, now I am gaining weight again! Walking does help and as long as my weight gain is coming from eating helathy food, I am not overly concerned.
Thanks all who shared my joy of the good scan result last month. PatG, love your constant sharing of survival stories with us. We all need the reminder sometimes...there is hope for us!
I just came back from a lovely wedding, which reminded me of my own wedding 12 years ago. Time flies! So nice to see couples embarking on a new life journey ahead. Also reminded me as I looked at my husband.....in sickness and in health, till death do us apart....
Sending love and hope to all!
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All this discussion on Ibrance is so enlightening. It seems to be a lifesaver, however. I just started - first cycle I only had l4 days of the 125 dose pill and it tanked my WBC to 1.2.. Dr took me off. Wants to lower dosage to 100. Don't understand the protocol of when to remove from the higher dose. Jaycee, I believe, said she goes until WBC is below 1. I thought that I would feel great after I stopped it. But....to make a long story short, I felt terrible. I couldn't breathe, had to drag myself from bed to bathroom, to bed, to kitchen, to bed, etc. Could not function at all. I felt as though I had a ton of bricks weighing me down. I stopped the Ibrance on Wed, 6/20. It wasn't until today that I feel "normal". That's 4 days of a 7 day break. I see Dr this Wednesday. I'll get the 2 butt Faslodex special then. But, if WBC's are still low will have another 7 day break from the Ibrance. (At least I should feel better this time) Tanya, I believe said its her week off and was glad. I hope the 100 dosage works better for me so that on my off week I can enjoy the break. I didn't feel that bad at all while I was taking the 125 dose. I had some shortness of breath, but I also have anemia. It was just after I stopped the Ibrance that I felt like crap. Does your body ever get used to the Ibrance? Does it stay in your body for a while after stopping?
Congrats Jaycee on your good scans, the same to anyone else who is enjoying the good news and the relief that goes with it. Thanks, too Jaycee for your report on the conference. Very interesting and you did a very thorough job of reporting back.
Prayers and good & positive thoughts for all of us who are having scans, treatments, shots, or whatever this week.
crissy
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My radiology tech changed the time I couldn't be around children from 24 hours to 8 hours this time. I don't know if that was an error on his part or if that rule has really changed.
Thereishope, the injection for the PET scan is a radioactive glucose mixture if I understand correctly. I noticed that the lead box (I think) it was in was marked with my name and the tech said I had to get it within a certain timeframe. I get a combination PET/CT and the CT contrast is the one that makes me feel like I'm wetting myself. Such an adventure!
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Thereishope and Pat, I get a PET scan every 3 months and was told to be careful around children for 8 hours. I don't hold my granddaughter or let her use my bathroom, etc., for 8 hours, but was told it was ok that she lived with me and I did not have to move out for the day. We just keep our distance and I don't prepare her food or hold her for the rest of the day--at least 8 hours. The amount of radiation in a PET scan is the equivalent of what you would get from the sun over a period of 3 years. This radiation could effect the growth plates in immature children (and pets) so they want you to be cautious, but it is very minimal.
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Did anyone’s Dr tell them not to be around pregnant women too?
I would feel horrible if I harmed anyone in anyway.
Thanks
Tanya
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Chrissy: Usually, Ibrance is stopped when the ANC is below 1.0. In healthy persons, the ANC is about 50% of the WBC, for me (taking Ibrance) it is rather 30-40%. So if you WBC is only 1.2, your ANC is likely to be 0.6 or even lower, which might be a reason for stopping Ibrance (even though I was once allowed to take it until the end when I had 0.63 in combination with a febrile infection).
The Ibrance has a half-time of about 25 hours, which means that after this time about half of the drug ìs still in your body, after 2 days 1/4, and so forth. Additionally, I have the impression that it takes a few days until the cell cycle arrest of the neutrophil production is finished and larger amounts of fresh neutrophils can be produced by the body. This might at least explain why my ANC at the end of the off-week is usually lower than my d14-value. After starting the Ibrance break, I usually feel better in the afternoon of the first day off (I take my meds at 8 a.m.), but this us not correlated with my ANC.
And for anyone interested in the contrast dyes:
Bone scan: Technetium-containing dye (radioactive)
MRI: Gadolinium-containing dye
PET: radioactive sugar-derivative (mostly radioactive Fluoride)
CT: Iodine-containing dye
Even if they do not interfere with each other, bear in mind that your body needs to get rid of them. In any case, drink a lot that day after the measurement.
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NettaGER. Great explanation. Thank you.
While on cycle 19, my ANC at Day 10 was 0.6, at Day 13 it was 1.2. Now I understand why.
I have started cycle 20.
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I think I mentioned it when I had it done in January, but I was amused that, at my PET scan, I was given a card to show that I had had a radioactive substance injected. The nurse told me I'd need it if I went to New York (20 minutes away - I'm in central NJ), because I would set off the radiation detectors that were installed in the bridges and tunnels after 9/11! I was tempted to hop into NYC for the day, just so I could experience that, LOL.
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Ciaci---
Funny story. I went by train to a large cancer center for a 3rd opinion. ( I am not continuing treatment there, it is just too far for me and my family to take off work and go to ). Anyway, at the consultation they wanted a bone scan, I had not had one before. On the way home at the train station I was stopped by Homeland Security. They said I was emitting large amounts of radiation. They had a hand held scanner and was walking around scanning the crowd without us knowing. I explained I was a cancer patient and had a bone scan the previous day. He wanted proof. I didn't have a card or anything---the cancer center didn't give me a card or warn me this may happen. I told him I did have papers showing I had just come from the cancer center. He was nice about it. While we waited on our train 2 other agents stopped me also. Kind of cool. My co-travelers thought it was cool also. I am kind of nerdy and definitely not the type to be stopped by Security. Something I will remember for a long time and a good story to tell.
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