Ibrance (Palbociclib)
Comments
-
Sadie,
I just started my 12th cycle, and like Micmel, I have done very well and my counts remain steady. They are low but not so low as to threaten my treatment. My onc wants me to remain in Ibrance as long as I can tolerate it. I see her Thursday so I will defer until then for an official update.
Chris
0 -
Linda-a gal on the Facebook group I belong to had mouth sores treated with something called "DEBACTEROL". Apparently must be applied by a dentist, and stings a lot for 10-20 seconds, then pain was gone and sores healed.
Sadie-I am on 11th cycle of 125mg. Tolerating it OK.
Best, MJH
0 -
Pat,
Congratulations on being the 2017 Honorary Survivor Race Chair. That is quite an honor!
My ankles started swelling on Sunday. Since I see the onc on Thursday, I will wait unless they get worse fast.
0 -
Sadie, I've been on 125 mg Ibrance from the start 17 rds. ago. My last scan showed stable and I asked the onc about reducing to 100mg to see if fatigue was better but he wasn't keen to do it. My counts have always been ok, some low RBC and WBC but neutrophils were okay so no need to reduce the dosage apparently. I have had lots of various SE's through the last year with stomach issues and mouth sores, thinning hair etc. all of which are pretty much resolved but fatigue is still an ongoing problem. Some days worse than others especially if I don't get enough sleep, I have no reserves then.
Keeping everyone in prayer and thanking God for all my MBC sisters who are hear to listen and learn from and who just "get it" like no one else. Sleep well everyone!
Faith (in the future)
0 -
Faith, Scwilly, ~into~, Congrats on the Great Scans! So many with good news it's hard to keep up! it feels like Ibrance is really moving the needle here..
0 -
Pat, I only did one cycle on 125mg, my counts tanked and was immediately lowered to 100mg. Just finished cycle 24 and doing well. My onc says the lower doses are still quite effective.
0 -
Sadie, I'm still on 125 mg, but at least for this cycle 2 weeks on and 2 weeks off due to tanking cbcs. The funny thing is that my lowest counts come immediately after my week off and continue to rise for a couple of weeks after I've started again. Supposedly it takes a week to get to "serum" level, but it seems to take two weeks with me. I have scans coming up before my next cycle, so I guess the proof is in the pudding. The MA that gave me my faslodex injection said I'm her best patient ever, that I don't even flinch. I still feel stupid standing there on one leg.
0 -
I am 19 months on 75mg and doing very well!
0 -
Singlemom1.....I am glad you are doing so well on 75mg....the Onc is moving me to that amount next week and have been nervous if this is powerful enough to help the cancer. Thank you for sharing.0
-
Does anyone just feel like crap on the week off? I have an upset stomach and ache all over.
Also when I was doing Taxol and A/C I developed this wonderful blistering itchy rash on my feet and between my toes. It has been two months and two different prescriptions later and I still have it . It's making me crazy 😜.
0 -
Dianarose~every month on my week off I feel like crap. I notice my stomach is upset and I have to take the nausea pills a little more often.
I also notice that my energy level also suffers. I feel much better when I'm taking the ibrance, then when I'm not. I also know for me , that is the week that I have my blood work, and Xgeva shot which wreaks havoc on my joints and body aches. So overall I dislike the weeks off a lot. I have just started to take Claritin everyday no matter what and it seems to be helping a great deal. I have been having a pretty good week, and today and I actually used a hairdryer. To try to make some sense of my new hair, which I am just thankful to even have. So many things we go through. I hope you feel better soon. Prayers for all as always. ~M~
0 -
Dianarose,
I thought it was just me! Yes, my week off is usually my worse especially the last few days before I begin my next cycle. Most of the time I just charge through it and eat crackers. It helps me enough I can go to bed and sleep at night. I am reluctant to take any extra meds. I know I will progress towards more meds eventually, but right now, 12 month in, I have not had to.
0 -
Glad to know it's not just me. Was thinking I was crazy 😜. I als have swollen ankles by evening every day. I have mentioned it to Doc but really haven't gotten any resp
0 -
Dianarose,
I am hoping when my doc examines my swollen ankles tomorrow I will get an answer. They have gone down a little today and I started a new cycle last night. Just wondering...
0 -
into the light- I will be curious what you doc says. I was thinking mine was from Fas
0 -
On my week off. Feel like crap.
>Z<
0 -
it doesn't make sense other then maybe it's because our bodies are recovering. I thought it was best to go on vacation on my week off. Won't be doing this again
0 -
Yes, and my onc even said most people go on vacations in-between cycles which is why I thought I was different for feeling so poorly then. So glad for this site!
0 -
Hi Ladies! I hope it's ok that I'm interrupting this thread. I've been reading here since my mom was diagnosed with ILC last summer with mets to her bones. Her onc put her on Ibrance, Letrizole, and Xgeva. She is doing really well. She is a very old fashioned and private person so she hasn't gone on this site and I don't think she wants to know much except that the Ibrance is working. However, I have been wondering what will happen if this drug stops working? Will my mom be able to survive many more years? It doesn't seem clear to me because the onc told me privately 3 years, but that was before the Ibrance and now she's doing so well. I was offered a job in another state but I fear to take it not knowing if she will get sick again.
0 -
Bowoky~ there are ladies here that have been on ibrance for a very long time. I think I met someone the other day with 44 months under her belt, there are many lines of treatment that they have to treat this stage of cancer. It's treated as more of a chronic condition with the idea being preventive in hopes that the medicine will also gain a stable or reduction in the tumors and it size of them. The medicine has proved to work pretty well. Your mother will be chronically sick honey, but that doesn't mean she can't live her life for many years to come and those doctors do not know what that medicine will do, those doctors don't know how long honestly most likely she will have many More years to come , she may need some help and and support, it is very difficult to deal with some of the side effects and she will be exhausted. You can only decide in regards to the job honey. Your mother will need all the support she can get during this time, and I would openly discuss your concerns and opportunity for this new job. The time is now to be honest with each other. There is nothing like a bond between daughter and mother. Just talk to her, I know she's most likely worrying and scared. We all are, but sometimes people want to talk about good things like a new job or anything other than cancer. But talk to her and if she's doing really well now, chances are she'll continue for a good long time on this drug. She will be added to my prayers as you will be, as part of the MBC family. Hang in there honey. I know it's hard. Sending hugs and prayers. ~M ~
0 -
Micmel....so sweetly said....and factual...God bless you and prayers for all of us.0
-
I feel funky during my week off-achy and weird.
0 -
I have a question. I just finished my third cycle of Ibrance yesterday and had my first set of scans (2 CTs and a bone scan) this past Monday. Though I meet with my onc tomorrow for her "official" response and explanation, I literally ran into my radiologist friend at the hospital on Tuesday as I was going to pick up copies of the results. He whisked me into his back office and read the scans with me on multiple screens, comparing them to scans from when I was diagnosed in Feb and with those taken for something else in 2016. I'm not sure whether I should be downcast or hopeful: according to his reading, things appear to be much the same as they were this February before beginning treatment, with extensive mets throughout the bones (except pelvis). He thinks that the mets are probably neither substantially better nor worse. There is "increased activity" per the bone scan, but he noted that could be either some minor progression OR healing. How long does it generally take for improvement to show up with Ibrance and Faslodex, or is that too specific to each person? I don't know whether to cry or be happy!! My onc has no idea that I already have this information.
Dianarose, I'd love to hear what your onc says about the swollen ankles. I have that sometimes, too. I hope that your appt goes well.
Bowocky, stick with us. The information and support offered here are wonderful. We wish your mom, and you, the very best on this treatment. And Micmel, what lovely and thoughtful advice you provided to Bowocky and her mom.
Z, feel better!!
0 -
Joy~ honey to me that sounds like you're stable. It sounds just like my results this past week. As long as there is not progression noted in the report you're stable. They do compare each scan as far out as they have access, I got a baseline PET and it was stable in comparison to all the other scans. Which means it's not progressing, I had the scan after six months and it was deemed very stable. My onc said it can take six months or longer to see regression. Or it is just how long the ibrance takes to work, sometimes stable is how you stay, with some shrinkage here and there. Just need it to stay out of the soft tissues. I also had my results earlier and read every single line, which they usually don't share with you, unless you request a copy of the written report which I had read already! to me that sounds like good news darling !! Congrats. Hugs ~M~
I don't have to see my onc for three months, which was music To my ears!!
P.s I have no idea what is up with my information below. It's going crazy. Sorry for all the space. I have no idea why it's saying transmission garble
0 -
Thank you, Micmel!! That is so encouraging! I read my reports, too (picked up copies along with the CD of the tests going back to 2016), and yesterday I scanned the reports, highlighted my questions, and sent them to my radiologist friend, who helped to interpret my questions. Interestingly, he said that it's frustrating for radiologists, because they don't know the expectation for these various drugs for the various different types of cancer and what's a good or less good result, based on expectations. He told me that my onc would have a better "read" on that, especially on a drug as new as Ibrance.
You're the best....thank you!! And hooray on not seeing the onc for three months! Enjoy this gorgeous summer!
0 -
Joy~ in my opinion , and having dealt with an oncologist that is awesomely smart,but doesn't do too well with English. I think the oncologist side of things look at the entire picture. Like the past blood work results he has access too every month, they show stable, why shouldn't the scan also be? He looks at every end of the picture along with the scanning, combined with our feelings and how we physically feel, if we don't feel badly and are maintaining weight and overall function is improving or stable then the entire picture points towards being stable. That is how his assistant nurse explained it to me one day. She's been right the entire time. I think you're amazing!! Keep on trucking ! Hugs ~M~
0 -
Hi All,
Regarding the swollen ankles, I have edema in my ankles from the Arimidex, which is a known side effect. I suspect other hormone treatments have a similar impact.
My latest concern is a spot on my left chest (above the breast - non surgical side) that is about the size of a dime. It's been there for a couple of months, appeared when I was on Taxol. I didn't worry about it as I thought it was just a pimple of sorts given that I had a number of blemishes appear during treatment. In the last week it has become quite sore and angry looking. I've used Polysporin on it and it seemed to get a little better but still a bit sore to the touch. I suspect it is a combination of my non-existent immune system and the location which is where my bra sits. While I am sure it is likely nothing, your brain always goes to the dark side! Sigh...
0 -
Thanks ladies for the tips on handling the lip blisters.
Joyner, My RO once said the very same thing to me about reading the scans. Sometimes they know what new treatment we are having and sometimes they don't and they don't always have the latest reports regarding the new drugs out there like our MO's have. He also said that when they review scans over and over every day, that they are 'tuned in' to areas that appear abnormal. It sure sounds like you are stable to me as well.
For what it's worth, my cancer pharmacist called me today to see how I was doing and I mentioned the swelling ankles to him. He said to always mention it to MO of course and that it can be a SE of Ibrance. He also mentioned that if there is redness and soreness in conjunction with the swelling to call MO immediately as that can be DVT.
0 -
Lindalou, thank you for the information. You ladies are amazing!
I see my onc in a few hours and will get a read on my ankles. My fatigue has also increased but my blood work is stable.It is great that your pharmacist called you--I don't have that support. But I can email my onc any time and she or her nurse responds quickly. You all encourage me to be more aggressive with my care although I have not been disappointed so far. It is good to have others who understand during this journey.
My prayer list is growing with this site, but I don't mind. I am blessed.
0 -
Sadie~ so your brain doesn't go to the dark side call them. Have you tried covering the area to prevent any infection at all from getting in? Maybe switch to another tank top or different variation to see if the constant irritating area would heal up? I would clean it well with peroxide at least two times a day to be sure it's kept clean and then neosporin and then cover for a few days, then uncover it and let the air get to it without any added irritation, if that doesn't help, then I would definitely have someone look at it. Ibrance cause some weird skin issues, I had seen them on the reactions listing before I stopped working with Pfizer ,it was rare, but anything with swelling and redness needs to be looked at,ibrance is known to thin out the skins elasticity and it tears easier even if we are scratching a minor itch, monitor that temperature as well, low grade fevers sneak up with mild start infections. Start by cleaning it really good and covering it. Then go from there. It could honestly just be an irritation from a pimple and your bra rubbing if the band clearly lays there On your skin! If within two days of keeping it covered and maybe one day uncovered. If it doesn't start toheal with the constant cleanings. I would start with Calling onc office and see what they say. Don't take any chances especially if there is any temperature what so ever. Big hugs. I'm sure you're mind doesn't need to go to the dark place. But infections scare me. You don't need any other crap to deal with!!! Prayers as always. ~M ~
0
