Ibrance (Palbociclib)
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Maaaki- this is very exciting news that Verzenio is working for you. I don’t know what the studies show but my MO said absolutely not and my UCSF MO also said no, at this time she would nt recommend another CDK 4/6 when the first one failed. I do have a fantasy that a more potent SERD or CERCE ? Combined with Verzenio could be in my future.
BAP- fantastic news about the scan- hopefully the liver will heal as the cancer is controlled longer.
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Sondra and BAP great scan news!
Bailey 5 I read your post this morning and wanted to respond but didn't have enough time. I hope all of your worries feel a bit different after sharing them. My friends department has depleted like yours. I know that in life we are all going through things but it seems as if some friends ditch us when it becomes "too sad" for them to deal with. I understand it but I don't like it at all. With regard to your daughter you survived all the treatment and losses and are still around. She can get therapy now it's never too late. Maybe therapy earlier would have made things easier for her but we'll never know that. I hope she gets a good therapist there are some around. My oncologist office offers therapist to the patients and on this bC site they offer a support group for care takers. Maybe she could dump some of her feelings there? There's also a support group for us as well.
I hope everyone is doing OK.
Tanya
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Bailey5, I'm sorry to hear about your challenges. We're here to listen. I had a few thoughts as I read your post. One was that your daughter may just now be dealing with the realities of her own mortality and projecting that anguish on to you. I was about her age when the idea of my own death became real to me and sent me into a depression. A second is that you are judging yourself too harshly -- it sounds like you've done a lot to help your children through something that you have no fault for. The Calm app has a nice meditation on non-judgement, making the point that we must first start with not judging ourselves. There's another on forgiveness that is helpful too. Third, I've told very few of my friends about my Stage IV diagnosis, only those most close to me that I know truly "see" the real me, if you know what I mean. A big consideration on who I tell is what the information will really mean to them, especially since I present to the world as a healthy person -- I don't need meals delivered, or help getting to the doctor, etc. I suppose I don't want to burden them with info they won't know what to do with. But back to the main point -- we're here to listen and help as we can.
Sunshine99, thanks so much for the link to Rabbit's blog.
I had my 6-month CT scan post Stage IV diagnosis on January 7. (To recap, in July 2021 a "routine" CT scan as follow up to ovarian cancer treatment picked up a met in my sternum, and a follow up PET scan showed it along with 2 non-enlarged lymph nodes were likely cancerous. A biopsy to the sternum showed my BC had returned -- after 9 1/2 years NED.) Results of the January 6 scan showed "no adenopathy" for the lymph nodes, and the sclerotic met in the sternum had not changed in size and showed "increased density...likely representing healing osseous metastatic disease." So NEAD, right?
And I remain NED regarding the ovarian cancer, almost 2 years after diagnosis. I'm not BRCA+, but Genomics via Guardant360 showed mutations in CHEK2 R346H @ 3.2% cfDNA or amplification and TP63 R282W @ .4%.
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Baily5 - I’m so sorry you are having such a rough time. I have no advice but if you need to vent, I’m hear to listen. Hugs.
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It does not have to be a death sentence. Try MMS https://www.mmshealthy4life.com/usage-information.html
wow
https://www.youtube.com/watch?v=FLMazKyIy9w
And Fenbendazole One packet per day. They come in packets of 3. Dog dewormer. Take one full packet of the powder once per day. Examine IVERMECTIN also.
1. MMS2 Fenbendazole
3. Ivermectin/Hydroxychloroquine for CURE
4. RIGVIR
5 PNC-27 Peptide
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Bailey5 - I also have a 22 yr old daughter. She is away at college, too, and planning to graduate in May. I know the feeling of wanting to spare your child of all the drama of our illness. I also worry about how she will fare after I am gone. But it sounds like you’re NEAD which is fabulous! You could have many, many years to see your kids through significant milestones. I think early 20’s is a difficult time as they seek careers, relationships etc. So I’d say they are in a tough stage right now, and don’t take their comments personally (tough not to, I know). And I certainly wouldn’t accept blame because you did the best you could; no one’s life is perfect.
If you don’t already journal, maybe start (I am planning on starting soon). It will be something my husband and daughter can read later, but I think it will be more for my daughter with some messages to my husband sprinkled in. And I plan to have some random thoughts for other people I am close to. Someone on this board also suggested writing down favorite things that happen each month so I will incorporate that, too. It’s going to be the most unorganized journal ever! I think it will be fun for me to do once I get going.
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B-A-P, I would wonder, too, why my doc wasn't concerned about pseudocirrhosis, did they give you an explanation? Hoping they can put your mind at ease about it.
Maaaki, thank you for posting about your experience with trying another CDK targeted therapy, that's really hopeful!
AnnTop, congrats on the great scan results!
GoKale, I love journaling, that's such a great suggestion. I haven't been writing recently, think I will get back into it, it does help me feel more organized in my head.
Thinking of you, RK, did you talk with your doc about what treatment they recommend for what's going on with your liver?
I'm cleaning the house this weekend, vacuuming, dusting, scrubbing... it's good exercise. The front stairs of our house have developed a leak into the garage when it rains, so having a contractor look at it next week. Which apparently necessitates me cleaning the entire house, even though they won't even be coming inside.
I've ordered a rabbit statue looking up at the moon, and also ordered an adorable statue of two bunnies smooching. Will post photos when they arrive and I place them in the garden, for our Rabbit.
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cakes- The only thing she said was that it’s like cirrhosis but not true cirrhosis because my labs are not showing it to be. She might have said something about regeneration. I speak with her on Thursday next week after bloodwork (via phone) to go ahead with my fourth cycle so I’m going to ask for more clarity if she can give it. Any time I’ve asked about it , it never really seems clear but maybe I just don’t understand. I just know looking at my own history and case studies, that it doesn’t appear to be a great thing.
I was speaking with the pharmacist on her service bc of random nausea and vomiting I get and she reiterated that there was just so much happiness the Pet was so good. So I guess there’s that.
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Hello, I am going to start Ibrance this coming week. I had my first shots of fulvestrant last week and will get the second loading dose this coming week when I begin Ibrance. I'm feeling nervous about the Ibrance and wonder how does it make some people feel? I've taken Tamoxifin, then Anastrozole, had an oopherectomy, and I think the fulvestrant will treat me similar to all that but the Ibrance has me anxious. It could be because of the lengthy discussion I had with the nurse and pharmacist, or the box it came in that says in bold letters "hazardous drug". How are you doing with it and what types of things help you manage side effects? I'm trying not to worry but maybe to gain insight. Thank you!
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Hello, I am going to start Ibrance this coming week. I had my first shots of fulvestrant last week and will get the second loading dose this coming week when I begin Ibrance. I'm feeling nervous about the Ibrance and wonder how does it make some people feel? I've taken Tamoxifin, then Anastrozole, had an oopherectomy, and I think the fulvestrant will treat me similar to all that but the Ibrance has me anxious. It could be because of the lengthy discussion I had with the nurse and pharmacist, or the box it came in that says in bold letters "hazardous drug". How are you doing with it and what types of things help you manage side effects? I'm trying not to worry but maybe to gain insight. Thank you!
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hi Cheka - I’m on my fourth cycle and haven’t had it too bad. It can seem daunting though. I find I’m extra gassy and have more BMs than I normally do . It seems to be quite common but it has eased a bit as I go on. At times fatigue can be tough. You have to remember it affects the white and red blood cells so platelets and hemoglobin do go down- which in turn makes you tired. i have a lot of other stuff going on so it’s hard for me to attribute everything to just ibrance.
It really hasn’t been too bad.All chemo and toxic drugs will have warnings. The chemo at my chemo unit is always delivered in this toolbox type looking thing and in an opaque brown bag with lots of warning stickers on it. I get it though . It’s like “all those warnings and you want ME to put that IN my body?
Luckily ibrance has worked quite quick for me and my first scan post ibrance was NeD which is just wild. I have a lot of liver issues at the moment but I’m being encouraged to look at the positives.
Everyone here is really lovely and encouraging. I’m sure someone else will chime in soon :
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Hi B-A-P, thanks for your response. Wonderful news on your recent scan! That's really encouraging even with all the other things you may be experiencing!
Enjoy your day.
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Compared to Iv chemo ibrance is much easier on us, usually. If Rabbit were still with us, she could really tell you. Suggest you look for some of her posts. And be prepared to laugh when you find them. But all meds come with warnings even aspirin and Tylenol. I’ve been on it about 2 years, aside from some nausea and constapation no big problem. And I’m NED.
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Thanks, Spoookiesmom. I figure it will be easier than the IV was, and I'll adjust to yet another new normal. I'm in the feeling blue phase of learning of new growth and change in meds. I am glad to have women to connect to through this forum. I've been seeing people talking about Rabbit, bless her soul. I will look for some of her post and welcome the insights and humor. How do you handle the nausea and constipation? NED! that's fantastic. Good for you! I'm hopeful!
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Hi Cheka I have been on Ibrance & Letrozole for over 5 years. I am on 100mg and think that is what most people should start on. At first you may find that you need an extra week off to allow your neutrophils to come back up. I have not suffered with nausea or constipation. I feel a bit below par during the 3rd week of the cycle but I don’t have fatigue even though I have always been a very poor sleeper. We are all different and some people get worse s/e’s than others however I have a scan coming up at the end of the month and I so fear having to change from these meds. Good luck to you and I hope that you do really well.
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Checka, I'm on cycle 18, I think. I had my dose reduced after three cycles, due to low neutrophils, but I seem to be doing OK on it. I haven't noticed any nausea or constipation, but I do seem to get tired more. Maybe it's the cancer. I don't know. The only thing I can think of is that you have to avoid grapefruit and grapefruit products while you're taking the drug.
Let us know how you do with it.
Carol
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On about day 8 or 9 of a cycle, the THOUGHT of food is disgusting to me. I eat whatever, or just have an Ensure, and chug water. I've lost about 15#, but had it to loose. If it's a real yucky day, MO called in compazine. Good stuff!!No vomiting and not serious enough to make me want to stop. 7-9 daily prunes seem to take care of that problem.
When all my drs run a full pan of labs, I came up low on B12. So I'm trying that, 5000 sublingual to see if that helps fatigue. Won't hurt I guess.
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Chico and Carol, Thank you for sharing! Although I know everyone experiences all of this very uniquely, it is so reassuring just to hear from others going through similar treatments. Yes, I've heard about the grapefruit. Encouraging that you've both been on it for a while~ hoping I can settle in to the new regimen and find a new balance of things. Good wishes on your upcoming scan, Chico. Blessings!
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Checka, welcome to this group of wonderful people, who have been very supportive of me since I was diagnosed MBC just over one year ago. The side effects that I have experienced from Ibrance are Fatigue (with a capital F), and I'm definitely more gaseous. Like Spookiesmom said, go back multiple pages and read how our dear Rabbit describes what to expect when you're new to Ibrance. You will laugh! Which we all need.
I had to drop down to 75mg after one cycle of 125mg due to extremely low WBC and platelets. I think most folks end up lowering the dose due to low ANC, that appears to be quite common. I am still working and I take care of my husband, who is ill, so while I am for sure more tired with less energy overall, I'm still able to do most things I used to. Just have to pace myself more, and try to not beat myself up emotionally about it.
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i will chime in and say I was started at 100 but had to lower my dose after cycle one due to super low Anc which landed me in the hospital with peritonitis (I have ascites ). So far on the 75 , I get low but good enough to go ahead with treatment although I’ve Asked for a 3/2 schedule just bc I’m terrified to get another infection and end up in the hospital especially with COVID raging at the moment.
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Hi Cheka. My experience on Ibrance has not been as bad as I feared. I was warned to avoid dragon fruit and pomegranate in addition to grapefruit, because of the interactions.
I had to takes breaks and go down to 75mg also. My bloods are still pretty low, ANC now usually .9. I do get pretty tired by the third week of the cycle, but its been very manageable. I just sometimes have to lower my expectations for what I can get done. I have a very physical job, so I pace myself.
I had a mastectomy 2 weeks ago (I'm off the ibrance during this part of my treatment) and the pathology showed the ibrance is doing its job, so I'm am happy about that!
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Hi, Checka, I've been on Ibrance for more than 4-1/2 years, and doing really well. My oncologist started me at 100mg, and I never had to delay a cycle. Currently in the middle of Cycle 59, and the only symptom I have is fatigue. Not bad at all, as I still do fitness classes and walk a LOT every day - my husband keeps me moving! If I need a nap in the middle of the afternoon, I doze on the couch for a bit, but it isn't more than a couple of times a week. I've been lucky since the very beginning (not counting the shock of the de novo Stage 4 diagnosis, of course), as I never experienced any side effects I can even remember! I think it might be like the pain of childbirth, though - you just block it out, LOL.
Haven't said it on here in a while, but I'm quite fond of saying that if I knew then what I know now, instead of crying on the kitchen floor clutching my yellow "DANGER - CHEMOTHERAPY" bag before my first dose, I would have danced around with a big smile on my face. This miracle drug has literally been a lifesaver for me, and I wish the same for everyone here.
That being said... my next PET scan is Feb 7th, and I'm already nervous. Scanxiety is very, very, real, whether it's your first or your ninth since diagnosis!!
Love to all - you keep me sane
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I actually tried to post an update a few days back but was in a low cell signal area and it never got submitted. Grrr. I’m going to keep this short…
Congrats on good scans SF Cakes and BAP. Take a breather and enjoy the results. I read Rabbit’s blog the other day. I still tear up. This loss gutted me so here I am, crying again as I type this. I get a liver (abdomen) MRI on Tuesday and see my MO again on Thursday. She is also ordering a liquid biopsy. I’m not expecting any surprising results from either of these tests but it’s always good to have as much info as you can when you embark in a new drug regimen. My MO took Abraxane off the table as it is too similar to taxol which I had for early stage. We want to try something different. So she suggested xeloda or Halavan (erubulin). After some thought I’m leaning towards xeloda because it crosses the blood brain barrier (and I have a lesion on C1 which us too close to my brain for my comfort) and it will allow me to travel this summer for a longer duration.
Hang in there checka. You are on a crazy roller coaster ride but this is an AWESOME group of ladies to support you when you are screaming on the long downhill slide with your hair blowing back in the wind. I assure you will feel better emotionally once you grieve a bit. You will still have bad days (we all do) but you will be able to enjoy so many more good days. And if you can’t seem to pull yourself out of a slump, there is no shame in asking for pharmacological help or counseling. Hugs.
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RK2020, I’m now on Xeloda, and it is not too bad. I like it better than Ibrance and Letrozole. I don’t know many who are on Xeloda and Faslodex, but I am. I am in your pocket for your testing.
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Congrats BAP and SF-Cakes on your recent scans!
RK2020 - In your pocket for all of your testing.
Cheka - I have been on Ibrance 125 mg for almost two years. I notice that cycles side effects are different then others. I think I had some back at the beginning that I don't get anymore and some that are hit and miss. My biggest side effect from Ibrance is fatigue. I still work full time and we also have a farm and ranch so I still can get some stuff done but not as much as I could before and I have to take breaks at times. I think I have more significant side effects from my Faslodex than either the XGEVA or Ibrance but quite honestly, some of these drugs have similar side effects so it is not always possible to say which is causing what or are some of them making a cumulative effect. Good luck to you on Ibrance! I have been NEAD since July 2020!
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To each of you, thank you so much for talking me through this and sharing your own experiences. You get it. I am nervous and sad, just two weeks ago finding new mets (MBC Dx was March 2020 exactly the day everything shut down for Covid). I'm glad to be welcomed and supported by this group. What is ANC?
Rk2020, this roller coaster is real yet I love pairing it with the wind in my hair. Best to you with your upcoming scans. and Ciaci, I need to dance with the medicine! As I stuff down my additional supplements I am really working on receiving them as a benefit rather than a burden.
Dancemom, I hope you have a safe and speedy recovery from your recent surgery. I hope you have people taking care of you. Great to hear Ibrance is working for you!
B-A-P, sounds like a rough go but it's helpful to have a provider who can help find the balance to work it out. I'm so trusting of them I hope for the best. We shall see.
There are so many different treatments and combinations. wow. off to post in the fulvestrant thread... I also get xgeva, and true to what cowgal said, hard to tell what I'm feeling and why. So much going on right now. I have teenagers and also work full time so I'm really glad to hear most of you can still manage life- adapt as we may. I am not opposed to taking naps and hope I feel ok to do all the things!
Blessings to you all.
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Checka, ANC is Absolute Neutrophil Count. It's related to our white cells and when it drops too low, we're at greater risk of infection.
Did I get that right, everyone?
Carol
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I was just to write exactly that!
The meds bring ours very low, which is expected, so we have to have our blood cell counts done monthly to make sure we are at an "acceptable" threshold. I read 1.6 - 6.1 is normal. The higher doses had me at .6, so I waited an extra week or 2 between cycles and lowered dosage. Now as long as I am at .9, my MO says it's ok. And its doing its job!!!! I just think I will never take off my mask.
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Gotcha, thanks for clarifying- Sunshine and Dancemom. Great names by the way, two of my absolute favorite things in the world are dancing and sunshine. Scary time to be having my WBC (ANC) count compromised! I work with children in a school but have been cleared to continue at this point. Go away Covid, so I can have one less battle to fight!
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B-A-P, that is so great about your scans! Congrats 🎉
Dancemom I wish you a speedy recovery for your surgery! I hope you’re feeling good.
Checka- Welcome, although I wish you didn’t have to be here. I’m currently in my 5th cycle on 125mg. I’m kind of on a 3/2 schedule now as my ANC is usually around .9 after one off week. It usually rebounds up to 1.9 the next week. My main SEs are fatigue, gas, constipation, and nausea. I take sennosides for constipation and sub lingual zofran for nausea. But they have changed in intensity each cycle. I hope your first cycle goes well
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