Ibrance (Palbociclib)
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oops typos and autocorrelation everywhere! I meant co-pay! And many women have done very well on hormones!!!
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baby~ welcome to this supportive place. But I am so sorry that you find yourself here. I know how shattering this diagnosis can truly be. And everyday I still cant believe it at all. Have you asked your doctor about going on this medicine when it becomes available? I know that the trial moved like wild fire, and there was a huge release of this medicine. I know Canada has just been receiving this drug finally and yes it is terribly expensive., Pfizer does have company card help and financial assistance programs to make them affordable to people that can't afford the 11k it costs per month. Many have been successful with obtaining it. Don't give up on that doctor., also google your closest Pfizer drug company and ask them when it will be released. I worked with this drug at the other company I worked for before I got sick I will ask the project manager when and if Australia is on the release listing. I saw China, UK, Thailand studies for billing before I got sick. So I will ask the project manager if he can see official release dates from Australia!! Sending prayers and gentle hugs always. Some woman have great success on anastrazole or letrozole alone for many years. If you fill out your profile we can see your treatments and your history with this awful disease and many knowledgeable women who can always offer suggestions and kindness. Book of knowledgeable on the forum. Keeping all close in prayer. ~M~
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Has anyone experienced a drop in kidney function while on ibrance/faslodex? My BUN has gone up significantly since I started this combo three weeks ago.
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just got results of my bloods again. On last Wednesday they were 0.9 (day 13 of first cycle) I was told to stop immediately and given 5 days off. Bloods repeated this morning and nuerophils are even lower!! 0.6. Should they be continuing to drop? I'm getting worried now. Can anyone explain. It's my first cycle so not sure what to expect. Thanks.
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Lilly~ are you feeling sick as in run down or just recently experienced a cold? Sometimes that can also interfere with some of the neutrophil counts. I always make sure to tell my doctor if I've been sick with a cold or anything so he knows to adjust the ranges he looks for allowances for during the month. Another thing I would ask is how areyour iron levels? If they are making you wait, it's better to be safe then sorry. I'm sure they will continue the blood tests for a certain amount of time to give you a chance to recover. It hasn't happened to me before, but I have heard of many instances of it happening. I am hoping that your counts will recover. You are in my prayers!
Piano~ I have never experienced that problem, but this is a book of knowledge place and one of the ladies will most likely chime in. If I ever have any questions about any bloodnwork I call my onc doctors nurse. She always calls me right back and answers my questions. I will keep all you ladies in prayer. Sending gentle hugs ~M~
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hey micmel, I'm possibly run down as I'm always on the go. Nurse rang and said of I got a temperature or felt sick to ring hospital helpline immediately. That was the but that freaked me out a little!
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Lilly~ I am sure they are concerned about you getting additional infection on top of being so run down. I know it's hard , but you have to rest.on the days I don't get any rest I feel so badly. Just keep washing those hands and stay away from people that are sick. Even if you have to wear a mask!! I hope your counts bounce back soon, stay strong. I know how rough it all can be! ~M~
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Baby - I am not 100% convinced that Ibrance is the best first therapy. There is an obvious marketing reason to make it a first line therapy... but i often wonder if it makes more sense to use hormone suppression alone and see how that works BEFORE adding Ibrance to hormone therapy. There are a significant number of people who do well on hormone suppression alone and do well for a long time. Especially if you look into complementary therapies as well. It may be that longer you can stay off the high tech drugs the better ... we're only just begining to understand how to use them and they get better with time. And if you used a weaker one first, the new improved version may not help you when it comes out.
I certainly don't regret having access to Ibrance, but who does better you or me .... we'll only know that in 20 years.
Grace Gawler is a great resource for cancer in Australia. She does integrated care, which is what I believe in. Combines standard of care with complementary care. I have a call with her tomorrow.
It's all one big crap shoot at the moment.
>Z<
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Thanks everyone ive added my diagnosis and treatments so far although was a little hard as both cancers were different so i couldn't put the size of both. Im also BRAC1+
What has me concerned most i guess is that i was on tamoxifen for less then 12mths and already a recurrence! Im not giving up on getting ibrance yet and it letrazole works on its own for a while then all good but my fear is it wont. One cancer was very weakly hormone + and the other er- pr+her2- so we have no idea which cancer it is atm that has spread.
Just out of curiosity how many women her diagnosed with mets in their 30's and how long have you had mets for now?
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I was diagnosed out of the gate, stage four within two weeks of finding it was cancer, I was 45, there are numerous ladies of all ages. I had many surgeries and my path to stage four was a tricky one as if they all aren't !!! I wish you nothing but success fighting this dick of a disease! Hugs ~M ~.
Z~ as usual agree with you completely on the first line of treatment. I have always thought the same thing about myself. But I realize that I have had The heavy chemo and maybe that is considered my first line of attack. But I would like to know how well anastrazole would work on it's own. But since I was stable last scan. I am not going to complain. You just make anexcellent point!
~M~
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Yup. No silver bullet. Ibrance certainly is not. All the ladies who progressed on ibrance recently will agree with that ...
Any one else tired of this today?
>Z<
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Everyday!
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yes, very tired of this. Form an orderly queue ladies!
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Happy to report I have had great news yesterday from my recent 3 months scan. No new spots on my liver, and existing ones shrunk. This is my first progress scan since taking Ibrance, and it gives me confidence (for now) that I am on the right treatment. I am now able to feel I am on a steady ledge for a while on this mountain I am climbing. Wishing success for as long as possible for everyone.
Sarah
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Sarah - It is great to get that kind of response in the first scan. If you don't get it, that does NOT meant Ibrance is not working ... it can take a while and CT scans do not always pick up tumor reduction.
However, if you get a strong response like this, it does allow you to relax. Your response is pretty much the same as mine and I just finished round 17.
Wash your Ibrance down with some beer (or if you insist Kombucha), enjoy the day and get on with your life. It's the best revenge.
Thanks for sharing the wonderful news.
>Z<
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Wonderful news Sarah! I have had great results on Ibrance also. Celebrate today!
Chris
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Babysaurs, I was diagnosed de novo at age 41 so suspect this was brewing in my 30s
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scwilly~ great news! I am so happy for you! I had a stable scan as well after six months so I know what you mean about that ledge, congrats all around to good scan results! So pleased for you as well intolight. I pray we all have many many years with this medicine working for us and knowing Z has 17 months under your belt gives me hope!! Thank you!!
Hugs ~M~
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Tired of it too...let's all take a break and meet in the Bahamas!
Sarah, that is great news after 3 months. Encouraging. I like your CA Starbucks mug. I have a NY, Chicago, LA, CA, and WI one.
I finished cycle 1 and on my week off. Nausea is better but my lip blisters are worse. I'm using lip repair ( Aquaphor) and rinsing with baking soda but hard to do that on the lips. Suggestions?
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Z: I had thought that it could take a while, but was worried if I didn't get a response I might be taken off it! Always we are under pressure. I will check out that beer.
Lindalou - I have a few and love that they represent memories and trips we have taken - my son who is at uni in Seattle started me off with a Washington State, Seattle and also a Canada one. I now have LA, CA, Las Vegas (World Rugby 7s trip) , San Fran, Oregon and Portland (all 3 when we did a road trip to see my son in Seattle), Texas (Austin college visit). I also bought a London one on a recent trip - then left the bag - together with a bunch of Clarins products - beside my seat by the gate! (boo hoo) Hope they have a Bahamas one for us!
Sorry no help with lips - so hard when they break out. Sending healing thoughts.
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scwilly and intolight, congrats on scan results, that's really good news! It's great to hear good responses and stability on this drug. Celebrate tonight!
Babysaurs. I was diagnosed stage 3 at 36. Stage 4 not long after I turned 40. Presume the mets were there at 39.
Lindalou, Bahamas sounds fabulous! Let's go😁 didn't quite finish my first cycle. Day 13 but have low wbc. I feel generally well, a bit tired bit nothing else. Hopefully I'll be back on it soon.
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Linda~does your onc know that you're struggling with these lip blisters? Keep a close eye on them, you don't want them to become infected at all. I would call their office and see if they can prescribe something topical that would help. I have some mouth sores but not on my lips. I am finishing my six month now and I am still convinced the funky side effects for me are all hormonal therapy reactions. Ibrance is very mild for me thank goodness! Call those people and get them to listen!!! ~M~
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One year on Ibrance but counts are not doing good. Have had .90 for the last two times they were done, will go again next Tues to try again. The Onc wants to lower my dosage to 75mg. Hope it will still work at this level. I had been doing so good until late. Will have Pet Scan around the first of Jun. this last count low due to the crude I managed to get from my husband being sick....yikes...all this is crazy. Wouldn't it be great to not think about this any more. The Bahamas....count me in.0
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Hi ladies. Well I finally got my ibrance today. I start it tonight. Ut says take with food. Are you eating small snacks with it or full meals. Im really dreading this drug. I got a deep cleaning on right side of mouth today and get left side tomorrow. I start xgeva thursday with my faslidex injections. I am so stressed about the amount if work that I am missing. Coworkers are being supportive. I hope everyone is doing good. Prayers for us al
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Melmc, glad you finally got the Ibrance. I think most of us take it after a meal. I take mine after a big breakfast but thinking about changing time. Don't know yet. Good luck, hope it works for a long time.
I just took the last pill of rd. # 17 today, and put me in the line of being very tired of this. When I think of years of this, it's overwhelming but at the same time I'm grateful to have it. It's so much better, I think, than whatever else is out there right now.
Scwilly and ~into~ , great news on the scans. We all like to hear this news. I also had a good scan after three months and things are still stable after 17 rds.
Z, concerning using Ibrance as a first line, I'm thinking along similar lines. In my first meeting with my MO he mentioned just using letrozole to see how it could control the cancer. I was in shock and not really thinking about much but if I knew then what I know now, I might have chosen that route. That being said, since there was a 25 year lapse since the first cancer and Chemo, isthis still a first line treatment? Too late to second guess now.
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So... finished my first cycle and had blood work today to check on the status prior to starting round #2. I have not heard from the oncologist yet but anticipate a delay as my neutrophils are at 0.7. Not really a surprise though. I had a couple of delays and dose reductions when I was on CEF in 2001. My blood doesn't cooperate and I have noticed that most of you seem to have a dose reduction from the initial 125 mg. Does anyone manage to stay the course at that strength?
I am not fed up with the treatment yet but I am darn tired. I really noticed it the first couple days after completing cycle #1. Bedtime can't come quick enough!
Great news on the scans ladies. I anticipate that I will have scans scheduled for late June and hope to see some results although it might be a bit early.
Cheers. pat
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Sadie ~ I have heard of doesage reduction if blood work cannot sustain 125mg. I asked my onc about it last week when I saw him about his thoughts on the doseages. He said always 125, unless the patients blood work shows a need or if side effects are really bad for them. 100mg has been shown to work very stable as well. That might be something that they suggest if this is something that keeps happening to you. I hope you're feeling stronger soon and figure out this blood work issue! Hugs ~M~
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Thanks Micmel,
Just had a call from my MO and he wants to delay a week and has reduced the dosage to 100 mg. l'm not overly concerned. As many of you have mentioned, AIs are very effective on their own so a week off shouldn't be the end of the world. And it seems that even 75 mg is very effective.
Question, how many of you were able to stay on 125 mg? It appears from what I have read on various forums that for most the blood just doesn't tolerate the full dose. Or am I just being overly optimistic?
Pat
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Sadie~ I am starting my seventh month only on 125mg and so far so good. My onc kept me on the medicine after my sixth month scan last week. He said he wants me to stay on it as long as possible, my blood work has always been steady and I have never had any problems with my counts whatsoever, thank goodness, 100 mg is also very effective and I saw statistics sheets that even had good results from the trial on 75mg. I really hope you do well with the lower doseage. I believe Z has also lowered her doseage by choice, she would be a good reference to see how much better she feels and what she's noticed as a difference if any. Good luck and hope you figure out the perfect dose for you! ~M ~
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Congratulations on this week's good scans, ladies! My second set will come up on the 30th and I'm hoping (and expecting) good things like with the first one. Your stories here encourage me!
About reducing from 125 to 100 mg, I've told this before but will say it for the new people. My doctor does not start anyone on 125 mg. He gets good results from 100 mg and people have a good quality of life. Fatigue is a given, sometimes better & sometimes worse. The two days after the XGeva shot are the days I'm a boneless chicken so I don't plan anything then. My counts have stayed barely normal or just below so far. I think I'm on cycle 9 (I can't keep up with it!). I had some mouth sores early on which natural yogurt cured. Same with sores on my lips. I get an itchy rash sometimes on my lower legs but not a big deal. My doctor always checks me for swollen ankles but none so far.
I was surprised to hear that someone here got Neupogen or Neulasta. My oncologist said that won't be something we will do. He also said he doesn't find his patients with lower counts get a lot of infections like they do with chemo-induced low white cells.
I was diagnosed at Stage !! in 1994 at the age of 44, had a second primary in 2002, recurred on the chest wall in 2012 (which chemo put in remission) and had widespread mets to the bones and soft tissue mets at the sternum in 2016. I've had all varieties of hormone pluses and minuses and have the BRCA1 genetic mess-up. (The genetics counselor says my daughter and I have such a specific mutation, they think all those with it are probably related.) Both my sisters have had BC (one twice) but they don't have BRCA1 which makes me think we probably have some other unidentified genetic mistake.
Some days this is easier than others but I've decided, corny as it might sound, to stick with living each day as it comes. I know God knew how many days I had before I got here so I don't think I'm going to mess up and miss any. I got word today that our Komen affiliate chose me to be their 2017 Honorary Survivor Race Chair. The Memphis Race for the Cure is at the end of October so I've got to stay alive at least that long!! I pray for all of you every day...sometimes more than once. Hang in there, my friends!
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