Ibrance (Palbociclib)
Comments
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Harry -
Your sweet Penny touched my heart. Thank you for informing us of her passing. I could feel the love between you two in your words. My deepest condolences to you and your family. She will be greatly missed by many.
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Harry,
I'm so sorry to hear about Penny's passing. Sending you my deepest condolences. She was well loved here. Thank you for letting us know.
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Harry, I also want to express my condolences. I felt a connection to Penny, that was my mother's name. You don't hear that name often, at least not in my every day encounters. Please take care of yourself.
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Harry, I did not know Penny, but I’m so sorry for your loss. You and your family are in my thoughts.
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Passing this along for anyone who is interested in talking to their MOs along these lines -- I don't think I've posted this (but who knows?) when I met with my MO this past Tuesday, I told her that I have pretty bad fatigue on Ibrance (I've been on 125 since August 2019). She did say that the SEs can be cumulative, but she didn't jump to lower my dose, although we discussed it. For the next month, she asked me to consider one of the following: if I'm still pretty fatigued when I'm supposed to restart, then she said it would be okay if I needed to take another day or so before starting. Alternatively, she said that if I'm near the end of my cycle and I feel like I can't take it anymore, then I could stop a day or two early. She said it would be fine.
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Harry, thank you for letting us know . Your Penny was always welcoming and upbeat . I am so very sorry for your loss. Love and prayers to you and your twins.
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Had MO visit yesterday. Have felt crummy for the past 2 months, told him all of it. He says, well, you’ve been on it over a year, you can stop, just stay on letrozole. No scans unless symptoms. And then you can go back on. That sounds scarey to me. I told him maybe there’s one cell floating around looking for a place to land, and ibrance was preventing it. You know you can have reoccurrence on ibrance too. Yes, I do. I suggested dropping to 100 revisit in 2 months. He agreed. He doesn’t know that if I still feel crummy I’ll suggest 75.
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Spookiesmom- Sounds like you have a good MO who is willing to listen and cares about your QOL. That is good.
It got me to thinking. We all want to fight. To do anything to keep the cancer quiet. But... really... this is terminal. We have the right to lower doses, pause treatment, not do scans right at the 3 month date. We have the right to say enough is enough. But.... we do not want to. I do not want to. I want to pick those scan reports apart. To swallow that med praying that it is keeping the cancer quiet. I still want to fight. To do anything if it could possibly help. I do not want to accept "terminal".
So, I posed a question to the group yesterday. I think it got lost in the conversation. So here it is again. Any thoughts? I am wondering if this neutropenia from Ibrance is stressing my body so when I have just a simple sinus/allergy thing it is getting to be too much. Scary. I messaged MO nurse. No response yet.
Question for the group---- I saw my CBC results on the patient portal. They mentioned "occasional Dohle bodies". Have never seen that before. Googled it. Something about neutropenia and inflammation/infection. I have had a runny nose and watery eye the last few days. No fever. Call into MO-- awaiting response. Hope nothing brewing.
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Spookiesmom - I would have made the same exact decision if I were in your shoes. Good for you that you spoke up and good for your MO that he listened. I found the side effect difference between all 3 doses to be dramatic. Good luck on 100.
Candy - I’ve never had Dohle bodies, but I wouldn’t be too concerned yet. Let’s see what your MO has to say. Please report back to the group.
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Got a scan this morning, in 40 minutes. Don't usually get anxious, but the hazardous air quality has my heart racing, which isn't helping. Lord, this week. Started with my Dad's death on Monday. Long time friend was in a motorcycle accident on the same day. Statewide fires causing the air to be unbreathable. Find out our president always knew coronavirus 19 is airborne, and... this scan.
otoh, Rain is projected for Monday in my area, and my brother, who is a mensch, brought me homemade soup and groceries. Someone sent me flowers (which were a PITA, because they are huge and I have no room for them and can't open my windows to let out the scent, but still so sweet and kind.) Friends who call, Eckhart Tolle's audiobooks, and Gaia TV are keeping me sane. Also, this board. Thanks, guys!
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Don’t think I could have done it without seeing the struggles some here have had. Thanks Ladies!
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Has anyone here played with the timing of Ibrance dose to see if fatigue was diminished. I take my Ibrance and Arimidex right after dinner. I have been on this regimen for a year. Everyday I hit the wall and crash and burn between 3-4 pm. Our pharmacist friend suggested taking it at night b4 bed with a snack. Just wondering about others experience.
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Goldens,
Well, I'd give it a try on the timing, but generally speaking, I take my pills (I on the pills, not the capsules) after dinner, pre bedtime, with a small snack, and it hasn't made one bit of difference for me from the days when I take it with dinner. The day of the cycle does make a difference for me -- the middle week of the cycle is the worst for sure.
But I'd give it a try and see if that works for you. We are all different.
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I am not planning on getting political AT ALL... but had to respond to NineTwelve. You said, "Find out our president always knew coronavirus 19 is airborne," which is just silly. In February, the President privately said he thought it was airborne, but the WHO, China, and Dr. Fauci all said it wasn't. Are you saying that you would have changed ANYTHING in your life if he had said that publicly? That you would have taken his word over ALL of the experts? If not, this "revelation" should be meaningless, and should not add to your anxiety. AT ALL.
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GoldensRBest, given the relatively long half life of palbociclib, 27 hours, its not likely that a change in timing of 12 hours or less would have a significant impact on the fatigue as the level of drug in your body from the previous dose would still be quite high.
There is a clinical trial underway where they are testing 5 days on, 2 days off, as a more frequency way to give the bone marrow a break, without having the week off during which time the cancer might be reactivated. All that is speculative, and subject to reporting of the actual results in patients.
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I don't think what NineTwelve said is silly at all. He's supposed to be the leader of our country. Many, too many in fact, hinge on his every word and action. He said it will be a miracle one day and go away, he said that it's just like the flu, he said it doesn't effect children, he said wear a mask or don't. Thankfully I personally don't listen to any of his lies. But there are so many people that do and here we are 200,000 lost lives later.
Sorry for derailing and important thread, but I had to respond.
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BevJen, here's an idea for you. Save 3 pills each month for 7 months and voila, a free month! And yes, you will still be dancing in 7 months. (How's that for changing the subject?)
For those considering a dose reduction, I have been stable on 75 mg for 4+ years. Next April will be five. And yes, I will still be dancing then. You have to ASK. They should be open to it. Those of us who have been here for a while remember that Pat's MO started everyone at 100 mg. Must be ok, right? He was a treasure.
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BevJen,
I might have missed a post or two about taking the tablets with a meal. I thought we didn't have to take the tablets with a meal. I am still taking the capsules but am trying to switch over to the tablets. I want to start taking ibrance at bedtime but I don't want to have to take it with food.
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Thank you all for your kind wishes. You all were so very supportive -- she talked about you often and I came to consider you to be friends also.
As our son said when she left us, except for the timing -- we wanted many more years with her! -- it happened the "right way." She was atpeace and didn't seem to suffer much. We are heartbroken, but for that we are we are very, very grateful.
Sending you all love and peace,
Harry
P.S. to Pat -- she was worried that she hadn't seen you post in a while time. She would be so glad to see your post :-)
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Simone,
Sorry if I confused you. No, you don't have to take the tablets with a meal. That was supposedly the major change. I just either take them at dinner or later in the evening -- that had been my pattern for 13 years with letrozole and it's easier for me to remember.
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Nine Twelve: My husband is a very big advocate of Tolle and Gaia. He started reading Joel Goldsmith's books about 40 years ago also. Not many brothers would do as yours has - the homemade soup (Chicken I assume) is definite the cure all. I have done personal "clinical" studies myself. Good luck.
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No message from MO office today about the "dohle bodies" on the CBC. And now it is the weekend. Well I have documentation, with the patient portal messaging system, that I asked about it and told them of my sinus/allergy/cold symptoms I am having. It is probably nothing and all ok. But I do worry that I could get a mild infection and my body could not handle it with these low counts I have been having. I hope my body doesn't get too taxed over something simple and I get really sick. Makes me think about Spookiesmom's comments--- do I potentially harm the body with the Ibrance in the effort to keep the cancer at bay. Risk/benefit. Maybe I should stop the Ibrance and just use Letrozole, instead of continuing with living with low white counts. I don't know what to do.
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well after four and a half years on ibrance 125mg and one month at 100mg my cancer has advanced. All of my mets are in my bones and im supposed to start xeolda sometime this month. MO said my body is just weary. My ANC would not bounce back, i was exhausted, mental fatigue and numerous other side effects. I had a pretty good run on ibrance and am sorry its over. Now to try and figure out where xeolda people are posting. I cant seem to find them anywhere. Good luck to you all.
Melissa0 -
Melissa,
Sorry to hear of your progression. 4 and a half years is a great run. There was one gal that had a 5 year run on Xeloda. I wish you luck. Search for " all about xeloda
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Xeloda can work great. The biggest downside is the hand foot syndrome, a burning feeling on the soles of the feet, and cracking of skin. They typically prescribe a fairly high dosage, and just like ibrance, lower the dosage if the side effects are intolerable. Best to get ahead of it by applying differin, bag balm, urea crème, some other sort of heavy duty moisturizer right away and religiously. Also, don't let them make you take too high of a dosage. They base the dosage on your height and weight, and the dosage is for most women too much. University of Southern California Hospitals doses all women at 1000 mg/ twice daily and they get as good of results as anyone, and much more compliance with taking the drug. Many Oncs will prescribe as much as 2500 mg / twice daily and its too much for many women to tolerate. My wife ended up going down to 1250 mg twice daily and she got good results right up until she voluntarily decided to switch to ibrance. She also did one week on, one week off, which also lowers the side effects.
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Ciaci, from one friend to another, I hope you'll consider removing your "not political but actually political" post. It changes the tone of our conversation.
Thanks and love from PatGMc
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Melissa...I'm so sorry to hear of your progression. Please keep us posted on how you're doing. I wish you the best of luck. My thoughts and prayers are with you.
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For those facing progression, I'm sorry, and I hope the next tx is an easy and effective one. Wandering, thank you. My bro brought me supplies wearing a mask that looked like something from WWI. The air quality index had got up to 700 on the previous day. Anyone breathing clean air right now will, I hope, take a deep breath and be thankful for it. For everyone facing fires during a pandemic and currently undergoing cancer treatments: My people, you have my deepest respect, sympathy and love, no matter your politics or your faith.
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Lisalou sorry to hear about your progression. I know PatMGc and some others changed and got off ibrance aNd then came back in several months later. I pray for the best for you with xeloda and all your treatments. Check in when you get settled.
Ninetwelve amen to your prayers. My niece is in San Francisco and she’s sent pictures of the hazy eerie red sky. It looks like a scared movie. You probably need the WW1 mask.
Tany
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Lisalou, so sorry to hear about your progression. Keep us posted on xeloda and your treatment going forward!
Ninetwelve, do you have your scan results back? Sending you good thoughts/energy/prayers that the scans are good. The fires are so devastating. I am near Seattle and we now have the bad air quality and fires too but Oregon has been hit harder. I, too have friends and acquaintances that had to be evacuated and leave their homes. I am thankful you have a brother nearby that can help you from time to time! Oregon is my favorite state. I miss living in Portland.
Ibrance update: My blood test 2 days later was good (.96) so cycle 11 started last night! I have been on tablets and take them around 8pm, after dinner and before bedtime. This seems like the easiest time for me since we are not going out /attending parties due to covid and now poor air quality on top of it.
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