Ibrance (Palbociclib)
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Lalady great idea with Angry birds flinging at cancer, that must have been scary when you were in lockdown. What a world we live in??
Longterm terrific stuff what you posted, now I will also follow that thread! It's good to know these things.
Kaption you are so right about these comments. No one has a clue of how, why these things happen? To say it can be prevented without knowing the History of this Monster or the details of the person is arrogant. Good for you for showing them how it's done. How could anyone explain what's going on with my daughter? And I've encountered many similar stories, just in this site, in different threads, no HX in our family, (at least not that we know of), young (25), had children, very conscientious with the right food, thin, NO known reason. BRACA negative. I am sure that are many other genes out there they do not have enough to go on, I grant you that. But it's not black/white
Angela such good advice, thank you so good to know.
Z when you say eating is important, what do you mean? Dani has a very small appetite, she gets hungry, but eats like a bird, I can't say much BCS I am the Mom, but…
Moissy/ Steelrose thanks for the answers on the Mammo
Faith you know that Dani has also been re-dx with Her2+ and is now taking Ibrance among 3 other tx. I spoke to Pfizer and they said a lot of doctors are using it off label.
Auntie was sent home. They don't know where it's coming from at this point. But the Hospital did not have a good excuse to hold her longer. In a way it's good, she's happier at home. And she is comfortable. Drain is out. So let's see, if she could hold off for awhile and keep the docs at bay. Thank you all for your support!
Hugs to all!
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Kaption, you finally know your plan. I bet you will feel some energy come back, off the Ibrance. That actually sounds good to me. Though of course we wish it wasn't because of it not working so well anymore. If you are up to it, I would like to hear about how you and your onc decided to go with faslodex only, and what the possible trial drug is.
Zarovka, you always find such interesting articles with valuable information! (I just read the one you linked recently, about how stable may be just as good as tumor shrinkage in terms of survival.)
Dlb, can you get anything out of your UCLA onc about Ibrance and stage iv ILC? Does he have any sense of whether there is a difference in response for ILC vs. IDC? We have quite a few people with stage iv ILC on this thread.
Faith, I once hinted at stopping Ibrance and just taking letrozole, and my onc and husband both looked shocked and sort of laughed. Not in a mean way, but in a you're-kidding-right? way. I think, wow, how can my body fight cancer if I am wearing it down so much, but then I go back to the average doubled progression-free time that the Ibrance trial showed.
Abrazos, mi hermana Aziza. I hope Xeloda works very well for you!
Singlemom, about the worsening mouth sores. You could ask that your blood counts be checked right before you start your next Ibrance cycle. Maybe they are not rebounding as well as they used to.
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Shetland, I actually asked my UCLA onc at one time if it made any difference if my metastatic disease was IDC or ILC, as I had both initially. She said it doesn't matter. You either respond to tx or you don't, and the only time she is concerned is to have a better idea of where you might have progression, which I guess can be a bit different in some women w/ILC.
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Thanks, Deanna. What I was wondering is whether there was any difference in the percentage of ILC vs. IDC patients who had a good response to Ibrance. The trials never analyze separately by type, but I wondered if the researchers had noticed anything. What prompted me to ask is the article below. It is very hard for me to follow, and I may be way off base, but it seems to raise the question of whether tumors with CDH1 loss would be expected to respond to a CDK4/6 inhibitor. Ibrance is a CDK4/6 inhibitor, and CDH1 loss is a genetic hallmark of ILC. As I said, I may not be understanding this, but I would like to discuss it with someone who has the expertise to explain what it does and doesn't mean.
"Rb and FZR1/Cdh1 determine CDK4/6-cyclin D requirement in C. elegans and human cancer cells"
http://www.nature.com/ncomms/2015/150106/ncomms690...
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anyone having to pay for Ibrance 100 mg ? I know when I see my insurance statements the price is outrageuos and thank God I have nocopay for it. Whew.
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Hi Shetlandpony,
I'm not getting my desired break yet. Since last week was a short one and my MO is contacting the trial nurse, I've been in limbo. If I don't hear anything by Thursday, I'll check with my nurse.
Anyway, I already had Ibrance for June and she didn't want me off for an unknown amount of time. If I go trial-there will probably be a washout. If I go just to Faslodex with her, there probably won't be a break.
The reasoning behind the change has to do with an initial drop in TM, then a slow rise, then new pain (with rads) and finally BIG TM jumps the past 2 months. Scans have been mixed. It's not clear cut and she said other oncs might disagree with her- I trust her and my own intuition that I've gotten all the good I can from Ibrance.
As far as the other trial drug, I'm not sure. I thought I was looking at the same one she was referencing (I had the list from the KU Med web site) but then I thought I had the wrong one and I'm sure she has a longer list. Anyway, she said it was a drug already in use, just a new pairing.
In summary, still tired, waiting for direction, I do know a change is happening. I'll know more soon.
Thanks for your thoughts. Best to you
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Shetlandpony,
A brand new update. My MO just called. The trial she was looking at is closed. So, new directions are to stop Ibrance, get a call to get Faslodex started and see her in 2 weeks So, be getting a little Ibrance break. No trial.
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Kap- Good luck! I am praying this works for you.
Shetland- I also am ILC- I will ask the above question when I see MO at end of month. My ILC returned only in bones after 18 years and not in breast? They tore my breast apart looking for the recurrence there. There was none. Go figure, the odds of that happening are not great. I need to buy lottery ticket. Putting me on Ibrance and Letrozole was a trial because my pathology report of bone biopsy said triple neg but original BC was ER/PR + After 8 cycles and healing mets I am definitely hormone positive. Dana feels biopsies (mine were not done there) are done incorrectly and they loose their ER/PR status. My MO at Dana Farber told me ILC loves the bones and is famous for going to bones more so than IDC etc. What I also found interesting is she said stomach is where it also invades. My TM when diagnosed before treatment were just outside of normal range. For the past 8 months each month they go up a little but I am stable and healing. I stay positive and my SE of Ibrance are not normal as I have neuropathy in my back and not my feet and hands. The letrozole has made my 64 year old bones arthritic and maybe the inflammation from that is causing the rise in TM. I also am on the lowest dose of Ibrance. Just finishing first cycle of 75mg. I hope it will continue to work.0 -
I was checking through last yr when Dani had so much aggressive progression, all year, different txs, but TM's were not astronomical, so I am afraid that even now, when TM's go down a number or two, it is not reliable. Scans were showing a much different picture.
Kaption so sorry this trial is not available. But the truth is there are many options out there.Hugs to you, and I wish you find the right combo for you soon.
I am thinking if I should post a separate thread, re:scans. Dani is due for her next Pet/CT full body,MRI of the brain, so I don't know if I mentioned here before, in the place that she goes now, they don't really go into detail about the sizes of lesions, and how they change, he said it's too many to go in details, my argument is, ok, so then choose a few from different locales, and go for it. They did me a favor and added an adendum to the last one, more of the different SUV's strength in different places, and use terminology such as: larger, smaller, stable blah blah. I wanted her to go to a place that does give us measurements, but it's further away, and brings back memories of past dr visits. Should I insist she goes there, If i tell her i really want her to go there, she will. What do you think?
LovesM love your smiley picture!
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MATT- I would insist that scans be done where they give the most accurate information. That way you don't spend the next 3 months wishing you did.
Hugs Carol
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Hey Patty! Good to see you. Yes Rx is very expensive but mine are covered too. A great blessing.
Rose. Sorry about losing your lunch glad you were able to enjoy the party.
Good luck Kaption.
Started round 6 today. Counts down so had weekend off. Felt great on Friday but started cymbalta on sat. Waiting for stomach to adjust but no pain! One of these days it will all come together!
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momallthetime -
I simply mean that eating is important. Being hungry, eating, enjoying eating, eating well. We are trying to balance the side effects of these treatments with the benefits. And because we are all tough as nails (or we wouldn't be able to be here talking about this experience) we tend to soldier through the side effects.
I can sometimes believe the fight with the side effects is the fight with the cancer. I feel that if I can hold on through mouth sores or fatigue or nasty neuropathy, I am winning the battle. But the fight with the side effects is not the fight with cancer. Eating well, regularly and enjoying it is a fundamental mental and physical tool in this battle. I am encouraging your daughter to consider modifying the dose or the timing or whatever it takes to eat better.
But its just something to consider. It's a balance. It's something to pray over and see what you get back.
>Z<
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Kaption - Good luck with your transition. Please let us know how you do with Faslodex. Many people do very well.
>Z<
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I hope I do well on the lower dose. My liver enzymes went crazy, I had mouth sores for about 2 weeks and used a special mouthwash which helped a little....I got headaches for about three weeks that eventually subsided. But am anxious to try again in 2 weeks...scanxiety coming up.
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Hi ladies. I took a few weeks off of the threads because I was obsessing about Stage IV and started losing my mind. I'm much better now and have had really active few weeks. Saw my MO 2 weeks ago and he was so happy with my blood counts, I n o w only have to have them drawn monthly. I'm on my 3rd week of round 3 with Ibrance/Femara, and my SE's are minimal. I've had a little more low back pain than usual, but I'm hoping it's because of activity and not progression. I go for my first CT and bone scan next Tuesday since diagnosis in March. I'm calmer, thanks to you ladies, knowing it takes a few months for the drugs to take effect. I went into my MO's office a month ago, freaking out about my spine mapping CT showing new and larger lesions on my spine. I just have to learn this is my marathon, and not a sprint.
A note on neuropathy: I suffered from severe neuropathy following my TC chemo, which ended 8/2014. I am now taking Cymbalta every night and have very little numbness and tingling, although have noticed a slight increase since starting Ibrance.
I've seen a few ppl talking about ILC vs IDC. The Univ of Pittsburgh Cancer Institute (the "parent" of my medical center), is sponsoring a conference in September, with a focus on ILC occurrence and treatments. There will also be sessions for ILC and stage IV patients and treatments. When I see my MO in 2 weeks, I will be asking if he's going. My breast surgeon wants to see me at the end of the month and I'll be asking her too. She works so closely with my MO, and she keeps him on his toes! Can't wait to read that transcript.
I hope everyone has a wonderful evening.
Debie
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I'm new here. I found this message board last night and have tried to read through as many posts as I could. Turned 40 in March. My birthday present was a Stage 2 BC diagnosis. My surgeon wanted to do a pet scan since one of two masses was near a lymph node. Sure enough, 3 small lesions on the liver.... in April I was moved to a Stage 4 diagnosis. Devastating BUT this diagnosis has forced me to make some really good changes in my life. I'm hopeful and optimistic and feel I have a good medical team.
I started Letrozole/Ibrance on April 30th so I'm about 5 weeks in. I've had no side effects. A little fatigue a few weeks ago, but otherwise I feel fine. My biggest issues are the worry, of course. I hear and read promising things about ibrance. Is that what you all understand? That ibrance is a really promising treatment? One thing Stanford told me was that if this first line of treatment doesn't work they have MANY more options. Is this what you understand to be true? I am ER+/PR+ Her2-.
I would also love to hear people's thoughts on diet and exercise and how that can help treatment. I've been doing a LOT of reading and research and am working with a dietician. Seems there's thinking out there that eating a largely plant-based diet and exercising a lot can not only help side effects with chemo but can also help keep the cancer at bay. Any insights or thoughts?
I appreciate all of your openness and honesty. I definitely have days full of fear and worry, but I try very hard not to let this consume me. Many see BC as more of a chronic disease now.... we just have to find things that can manage and control it. I'd LOVE a cure, right? But being able to see my two boys graduate high school (and beyond) would be "good enough." I look forward to learning from you all.
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Hi eelder,
Welcome to the bco forum 8!
I'm sorry I don't have specific Ibrance answers for you, but expect others who know more to come along soon.
Yes, there are many treatment options for metastatic breast cancer that is ER+/PR+ Her2-.
If you aren't post-menopausal, I hope you've investigated ovarian suppression through drugs or surgery.
Eelder, you're taking the current favorite treatment for newly diagnosed post-menopausal, hormone positive MBC, but there are many other tried and true anti-hormonal treatments before chemotherapy...should you run through this combo. Not to worry, many of us get years of decent quality of life with less toxic treatments. A few need to try different ones to find what will work.
If you're a book reader or listener, have you read Servan-Scrieber's Anticancer: A New Way of Life; Keith Block's Life Over Cancer and Kelly Turner's Radical Remission? All of them explore possible approaches that have helped many to live with with or recover from cancer.
Eelder, I'm in N. California, though go to SF for care, not Stanford. Yet, I hear good things about their work and hope they do good by you.
sending a virtual hug, Stephanie
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Thank you longtermsurvivor.... I appreciate the response and book suggestions. I will absolutely check those out.
I get Lupron shots every 3 months to suppress my ovaries as part of my Letrozole/Ibrance treatment. I had some achy joints at one point last month which my onc attributed to either the Letrozole or Lupron but those have disappeared. At least for now.
I'm interested in hearing what others on this board are doing that IS within their control. I feel the medicine is either going to work or not. For some, Ibrance is the miracle drug. For others it seems it doesn't really work. The day I was diagnosed I changed my diet fairly drastically. I didn't eat horribly unhealthy before, but I KNOW I was not getting my fair share of veggies and I was probably consuming too much sugar (not even really through dessert... mainly through white bread and such). I also rarely made time for exercise (I teach and am mom to two young boys.... I just never had time). Well, I'm making time now. I have a friend who is into holistic medicine and she believes you can do your part to control this through diet, exercise, and lifestyle. Maybe I'm yearning for something I can do.... Maybe I'm crazy.
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Eelder,
Look into your vitamin D levels and supplementation for those achey joints...some experts say to people with cancer need to get their levels above 40, 50, 60...I guess the sky's the limit. <wry grin>. Glucosamine sulfate was also helpful for me. And warm water & clothing, yoga, movement, exercise. Waking up creaky doesn't condemn us to being creaky all the time. (Seeing Dorothy's tin woodman in my inner eye.)
You might also check the Femara thread, though it has thousands of posts to sift through. Whew!
https://community.breastcancer.org/forum/78/topics...
warm healing wishes, Stephanie
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I am on day 14 of my first Ibrance and getting my 2nd fsslodex shot tomorrow. I was extremely stiff and achey for about 10 days. I started taking Meriva which really helps with the stiff/achey. I also feel like I have more energy than I have in a long time. I think this treatment is working because when I have active cancer I feel so tired and run down all the time. I actually spent the weekend cleaning. You can't tell I did anything because that's how long I have let things go due to no energy or motivation.
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Good luck with Ibrance it isn't working for me.
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HLB this is so interesting. Have you ever talked to your doctor about feeling more tired while cancer is "active"? Is there something to this?
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dear eelder: You mentioned stage IV now being treated as a "cronic disease" by many doctors. This especially caught my eye as those were the exact words my oncologist told me coming up on 5 years ago(Aug.2011) when I was diagnosed with Stage IV at the get-go. She said that's how she'd treat it. Since that time I've been on 6 or 7 kinds of chemo(including Ibrance which I began 7 weeks ago). I'm doing well and have been. I've been able to take many trips with my husband, dance with my son at his wedding, watch grand children go from infants to having great conversations with them now - so,while I know each person's experience is different and their journeys also such I just wanted to say - look ahead positively, girl! Sending good thoughts your way.
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...when I was walking an indoor track recently(I live in Phoenix area and it's over 100 most days now!) a woman asked me if my oncologists thought I should eat chocolate (I didn't know this lady at all)...I simply replied that it never occurred to me to ask my doctor about chocolate as I love dark chocolate and eat some regularly - that if I were to die, doing so with some dark chocolate in my mouth seemed as good a way to go as any!.....I've been in chemo with this Stage IV for almost 5 straight years now.....
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Annewithane, thank you for your reply. I've heard the term chronic disease from several doctors and it's been referenced in many current articles regarding breast cancer. You are absolutely right that every case is different. I have to believe we know a lot about BC now and my oncologist says that every year they come out with new treatments and they start to understand BC more and more. My "second opinion doc" at Stanford said he finds it almost hard to keep up with all the changes - we're learning more and more each day. Of course, cancer is unpredictable and it misbehaves and has a mind of its own. But I can't help but think - wow - ibrance! So new and apparently so incredible for many (unfortunately not all). What's next? There WILL be something next.... and after that.... and after that. As upset as I am about my diagnosis I choose to be hopeful. Some days are hard, but at 40 with two small children, I simply have too much to fight for.
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One question... I will have my first scan after three months on ibrance. Do they typically do bloodwork too? Or just a scan? And if I did a pet scan before which determined the 3 lesions on my liver, will they do a pet again?
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Eelder, I've never mentioned it to my onc except when he asked about side effects, I would say more tired than usual. I did mention to my holistic onc how tired I was and he said it could be the cancer because people with a tumor sometimes have fatigue. I haven't seen my onc since I started this new treatment because it's only been 2 weeks. As for the PET. My Dr's usually won't do it sooner than 6 months after the last one because many ins won't pay if it's sooner. I frequently get ca 27-29 and if it's going down or staying the same he won't usually do a scan, because it's been very reliable for me as to what is going on. When I first started treatment for st 4 I went 2 years without a scan because the markers went down and then stayed down for that length of time. I'm glad they're accurate because I don't need as many scans, although after they started to go up I have had a lot of them due to also having radiation.
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Rosevalley I am sorry to hear this. Are you sure it's not working? I know it's making you feel awful. I guess that may as well be not working because it would be so hard to live with vomiting. In my opinion anyway.
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I may have asked this here before, but has anyone experienced swallowing/choking problems on Ibrance? Or Aromasin? I've been removed from both drugs (temporarily, I hope) for severe neuropathy. Now this choking business. Can't walk, can't eat, UGH. Onc. wants a brain MRI now. No headaches or other symptoms of that but it's set me in a tailspin.
Thanks for any input!
Rose.
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