Ibrance (Palbociclib)
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Call Phizer Tuesday and ask them.
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Snowdrop – sorry to hear about your leg and I hope you get a helpful diagnosis and treatment. My left leg recently swelled up. My first thought was bite/sting since I had been spending hours outside without shoes on the beach. No redness, heat, or pain, just swelling. When I saw the MO's PA 2 weeks later, it was still swollen, and she seemed unconcerned. Blood work looked "normal" , no fever/temperature. The LE did not think it was related to the cancer or lymphedema in the right arm, but measured it and used a pump, sent a note to the MO that she was concerned. Elevating every day and using the sleeve of the arm on the leg, which helps. A week later it looked a lot better, but everyday the swelling returns. This has been going on for over a month.
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Snowdrop and BlueGirl - I hope they can determine the root cause stat. And I hope Snowdrops antibiotics work their charm soon. Swelling sucks and makes me feel sick because unlike my mets, I can see it. 😢
And Snowdrop don’t get me started on reasons people can seek out ER treatment. My husband spent almost 30 years as an Advanced Cardiac Life Support paramedic in the Chicago suburbs. The stories he could tell. And yet some people could have their arm half severed off and are like “I can drive myself”. And that’s why I hesitated to go to the ER for my leg pain which resulted in my dx. I didn’t feel like I needed “emergency” care but the Urgent Care couldn’t take me and my husband convinced me that something was very wrong and that it could not wait weeks until my orthopedic appointment. He was right. My femur was in imminent danger of fracture. 😔
Portmanteau - I was told to take those precautions when I was on IV chemo but was not told any such thing when I started Ibrance. I don’t recall reading it in the Ibrance pamphlet either. But if you want the skinny on this topic, I’d contact Pfizer.
Rosie24 - I have no insight but you will be in my thoughts until you get some answers. Hugs.
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Portmanteau--for both CDK4/6 inhibitors I've been on (Ibrance, then Verzenio) I was told to take precautions.....don't touch, definitely don't let childbearing age women who might get pregnant get near the pills or anything that might have my own bodily secretions (except sweat an saliva, they weren't worried about those) on it, use condoms if sexually active. Close toilet seat and flush twice. Wash fabrics that have anything on them that might have traces twice, etc. The concern, I gathered, is not just the standard Chemo concern, which wouldn't make sense since they are not Chemo drugs. Instead I think it's a concern that the way these drugs mess with cell division could damage an embryo, but they don't really know how. Even though my 20-something daughters swear they don't want children, and one doesn't live with us most of the time, I've been trying to follow the guidelines.
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thanks so much ladies you are awesome. Bluegirl and prairiesea I’m sorry you both experienced swollen legs, I took notes from your posts ( lymphedema & infection) Since the ER cutie (as KBL would say:) wasn’t completely sure about the source of problem, he recommended to take antibiotics and see my pcp for the rest of treatment or if symptoms change return to ER. it is better for me to consult with my MO thou, again thank you both for details.
RK, i understand what you mean, when I was waiting for blood test (the second wait) in the ER waiting area a triage nurse came to me apologized for the wait, he said unfortunately the queue is busy, “of non emergency visitors” I added, he seemed unhappy about it too.Rosie, looking forward to seeing your NED result.
Portmanteau, I’ve learned to not take medical advice from nurses! They have a booklet full of different information- a general handbook-which is not necessary related to your condition.
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Snow-drop, funny story. I went to the emergency room last November because I used wipes I had an allergic reaction to. I don’t know if anyone remembers my story. I was trying to treat it with yeast medication because it - well, you know. Anyway, I was making the problem so much worse. I walked into that emergency room and saw the ER doc. Cute as heck. Lol. All I could do was apologize profusely for having to have him check an old lady’s hoo-hah. I was so embarrassed. I totally get the cute doc.
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For those who have switched meds but are still here, do you know if you have to be off Ibrance for a length of time before you start a new med?
Candy, how long were you off before you started Lynparza?
Thank you. I'm very appreciative for anyone who stays here after they switch meds so we can get answers to questions.
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KBL - That story is priceless. Doctors should not be allowed to be cute. 😂
I’m also curious on average time of break after Ibrance. I will discuss with my MO on the 14th but am curious what others have been told. This last cycle has hit me rather hard and I’m looking forward to a short break.
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RK2020, LOL. You’ve got that right.
Please let me know what your doc says. My appointment is on the 13th, and I haven’t had the discussion yet, but I really have to go to the next line. I can barely eat at this point. Thankfully, still no vomiting, but I don’t want to get there.
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RK and KBL, between Ibrance and Verzenio, I was off for 4 weeks. This was partly because I had gone off Ibrance after checking ANC on my third, lowest dose cycle after 2 weeks because I was going on a trip. They were heading rapidly south, and neither my MO or I wanted me traveling by plane, and 2000 miles away, in grade 4 neutropenia. I was gone a week and didn't have an appointment with him until about a week after I got back, when we discussed next steps. He then ordered the Verzenio but it took two weeks to set up the insurance, specialty pharmacy, training, etc. So I don't think the wait was medically necessary, it was just the way things worked out.
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KBL- I was off Ibrance/Letrozole 17 days before starting Lynparza. That is just how it timed out. When we discussed moving to Lynparza, then my MO said to stop the I/L that day. We did the prior auth with insurance and set up delivery of the med. When I got the Lynparza I started it the next morning. So... 17 day break from one med to the other. We did do a CBC before I started the Lynparza-- baseline test for the Lynparza so we knew my numbers when I started the med.
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Thank you so much, prairiesea and Candy, for the information. I hope the switches are working well for you both of you. It’s scary moving to a new line.
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I have been on Ibrance for 18 days and have diarrhea sometimes several times in a day and then i can go several days with no problem. I never know when the diarrhea will come back, it just appears. My oncologist and a gastro doctor doesn’t think it’s the medication. Would love to hear anyone with issues
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Re Vaccine booster: For folks considering the same, do you have instruction re timing like the initial dosage of the vaccine. do we need to take a week off or does the booster work differently? I haven’t read anything about this for ibrance. I plan to message my MO but she is off this week. In addition I’m struggling when should I receive the booster. Since my WBC/RBC are below the norm, should I obtain ASAP or wait until more data is available on the same. Such decisions. Anyone else having these indecisive moments?
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Tinkerbell, I’m also going to see what my MO says, waiting to get this week’s appointment rescheduled after their cancellation. I lean to waiting for the 8 months after the 2nd dose but will see what she says. (For me that would be Dec.
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Tinkerbell, my MO recommended to get ‘third dose’ 8 months from the second dose- which is December- and to hold ibrance one week before and one week after injection.
KBL, good luck with the switch, I hope you get great result with the new line. please report back.
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Thank you, Snow-Drop. I have appointment the 13th and am not taking no for an answer or let’s wait two more months. I have the proof I need to move on.
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Regarding vaccine....my MO did not see the eight month timing to apply to third vaccine shots for people who are immune compromised. Nor did he think I should quit Verzenio to get the shot, which I thought was a bit strange, but I wanted to be as safe as possible in the midst of this current surge, so i went ahead and had the third shot last week. Hope it is still effective....
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prairiesea - it’s my understanding that the 8 months is for the general public. I know plenty of MBCwomen who got the third shot right away. I didn’t stop Ibrance for shots one or 2. I have not yet discussed the booster with my MO but I’m not in a hurry as I feel my strong reaction to the second shot has left me with some good immunity. Of course, I can’t back that up scientifically. Besides, I’ve got enough fish to fry right now with radiation and new line of treatment.
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thanks for the responses relative to the vaccine booster. I’ll report back when I hear from my MO. I can be swayed either way obtaining now or wait 8 months. I plan to take the booster during my off week. Perhaps I’ll give myself the extra week off like I did with the initial vaccine. I have to say it felt good to be off ibrance for 2 weeks.
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My MO told me to get the booster shot "ASAP", scheduled for this afternoon, actually. She did not want me to do anything differently with my Ibrance regimen.
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Well I feel like crud with this Lynparza. Today is day 5 on the new med. Nausea and no energy. I joined a closed FB page of others on the drug, mainly ovarian cancer patients. Most have posted that this is how you feel with it. And that the first month is the worst. One posted they had nausea for 2 months !!!! This is not QOL, in my opinion. I know I have to give my body a chance to adjust. And slowing the cancer is #1. But... I do not feel like doing anything. I know some of the "not do anything" feeling can also be grief with my sister's passing. The grief process. The stress of the last few weeks. But, I feel awful. Waves of nausea, no appetite, want to sleep all the time. I cannot get things done I need to do.
I bet the next thing to deal with is a thyroid biopsy--- thyroid lit up on the PET, history of benign nodules. I don't know if I can face that right now.
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Candy, Sorry you feel so lousy. Is Lynparza like Ibrance with on and off weeks? Hopefully if it is,the off week will let your body recover a bit.
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Rosie- Nope. Pills twice a day, every day. No breaks.
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Candy, Ugh, so hopefully you’ll adjust as you’re on it then. Trying to think positive, that eventually you’ll get to a better place and feel decent again. You have a lot on your mind and feeling crappy just gives you more to stress over. I hope the thyroid biopsy is benign. Hugs, friend
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Candy sorry the lymparza is miserable. Hopefully after the first month or so the SE’s will subside. You’ve been through a lot lately. Did PatMgc stay on for a short time and then return to ibrance?
Tany
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Tanya- I think she was only on Lynparza a short time. Maybe she will chime in here. I hope the nausea subsides. I don't think I can continue on this if this the the "new normal". Real QOL issue to feel nauseous all the time.
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Candy, I saw your question about Compazine in another thread. My doc said no constipation. Took it twice, and, yep, constipation. Just wanted to let you know.
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Thanks KBL. I think most anti-nausea meds can cause constipation. They are slowing down the GI system and drying up secretions, so they are going to constipate. Fun fun. Nausea or lack of pooping, choose.
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Candy, this can't be your new normal. It is a temporary adjustment period or a prelude to a dose reduction. Please read my post to you on the Lynparza thread. You are going to come out the other side of this.
KBL, I am worried about you. I feel that your next treatment needs to start right away. I know I am not your doctor, etc. but this is my intuition, do with it what you will. I will be worried if you have to wait a few weeks for them to sort out insurance coverage, etc. Any chance you can be seen before the 13th and get the ball rolling?
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