Ibrance (Palbociclib)
Comments
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Cure-ious, thank you for your thoughts about delaying or not, and I agree with you, I am going to start the combination because it feels a little scary not to. Really grateful for your links, too.
Just got off the phone with the pharmacist from the regional Oncology Pharmacy here (didn't know there was such a thing until now), and I didn't hear anything new about taking Ibrance that I haven't already read here from this community! Actually have received much better suggestions and recommendations from all of your experiences. THANK YOU
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Hi all and welcome to the new Ibrance Dancers!
SF-Cakes, I see your name and I think of "Just Desserts" . I grew up in the Bay Area and worked in SF at Four Embarcadero in the late 80's (office on the 40th floor I think ?). There was a Just Desserts bakery in the retail area. YUM!
Rosie Red and SF Cakes, like SondraF I found that taking my Ibrance at night, works best for me. I was pretty concerned about SE's. First monrh I did have a canker sore, haven't had one since. First month I felt like it was keeping me awake, but I really think that was anxiety and who would blame me for feeling anxious?! I had a lot of fatigue from my symptoms that were created by the cancer so this actually went away once I had my second fulvestrant injection. I have had some hair loss - not sure it it's the F or the I. I notice it as it is all over my house AND I need to wrap a rubber band around an extra time if I put my hair in a pony tail, which is less often these days:) It is not noticeable to most people, in fact I get more compliments on my hair ???!!!!! It was extra thick and a bit unruly. I do tend to get a bit constipated by week 3 and have started taking miralax daily during this week.
I am now on 75 mg Ibrance due to consistently low neutrophil levels at day 28. I feel really quite "normal" and I find that to be a blessing. I was NED by 7 months on I/F and have had petscans with NED or NEAD the following two scans. Another one coming up in April. I have them quarterly.
Wandering - love the poem you posted!
PatMc - you are such an inspiration and so encouraging to all. I adore the photo of you and your husband and the article from 2014!
Jensgotthis: Great advice! I am going to engrave "Don't write the ending" on something.....maybe my chest as a tattoo?????? my only tattoos are from radiation in 2009.
Holly1202 - I will be thinking of you and sending good energy your way as your start RT and Keytruda. We did get snowed in the weekend of Valentines Day, I'm sure you did, too!
Cureious - thank you for all the guidance and science knowledge! Invaluable. Like Jaycee49 just posted, WE know more people on these drugs than our oncologist are most likely working with....KNOWLEDGE IS POWER!
Candy - so thankful you got the vaccine! I am not patiently waiting, but am waiting for my turn.
RRabbit - special shout out to you, young lady! I have had a wild, small rabbit in my yard for a year. For a while I thought it was my imagination or a spirit guide as no one else in my family had seen this sweet bunny. However, now others are seeing it (if it's the same one?). We don't get a lot of wild rabbits around here (too many coyotes).
Thinking of all of you!
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Jaycee49- When I was on AA, there was no generic for the Everolimus- it was $19,000 per month (more than Ibrance) I hear that there is a generic now. for me it was an easy treatment- I hear that is not true for others.
the xeloda is generic and costs about $600. per month- Hopefully you don't have to change soon and Pfizer/or other group comes through with a grant for it. An exhausting burden to chase the grants.
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Jaycee, That is an excellent but scary point, that we know more people on any given drug combo or probably even any specific trial than would be true for most of our MOs...I hear you that the Ibrance-Faslodex might not be enough, or might be somehow progressing already (how could we distinguish between those) but woe to the MO who would push me to try Xeloda at this point- no way, no how. Could be a stupid mistake but I don't want to hear squat about chemo, and so far as I'm concerned they just lean on that as a gateway drug to chemo-city, which doesn't lead anywhere great. I'll be happy to have it when all targeted drugs are exhausted, and people have gotten years on it, but now is too early.
I was just reading that for lobular cancers, the Affinitor-Aromasin combo is actually significantly stronger than Ibrance-Faslodex as a second line treatmenht. It was a retrospective analysis and they saw that AA was getting average of six months, the I-F getting five months- meaning half go longer. To me, that means both work, which is good news since we don't hear much about using AA anymore; they really need to tell us who/what it works for.
For me, after I-F the next line would be a SERD or Dee's ARV-471 trial, and the question would be what to try combining it with, whether Verzenio or mTOR inhibitor or test for PI3K or HER2 mutation.. Then after that can come immunotherapy combo and/or PARPi- all that before anybody so much as mentions the existence of Xeloda, and even then,why not Enhertu, which has a longer PFS...
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Can I just say that I’ve just completed first cycle of Xeloda.... after I/L failed ( 28 month run at it though) and Faslodex did nothing, there is no other choice here. We don’t have options for combinations such as those mentioned here and Verzenio/ Faslodex as second line has just been refused by Nice ( equivalent of FDA). Too expensive and not enough evidence of PFS versus chemo. Quality of life doesn’t seem to count.
So I’ll take the Xeloda as my only option and my MO’s drug of choice to try and arrest 4 newly formed bone mets and nodes in the pleura.
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Jaycee, those pills exacerbated both the nausea/vomiting and the gastritis. Hopefully, the next batch won't be as bad. My hubby uncovered another bottle of the capsules so I can delay that a bit.
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Wonderful, Karen, I certainly did not mean to disparage a great drug like Xeloda in my post, and hope it did not come across like that! You (like a lot of other people) have a harder trek to make, without access to every drug, but you will make your own success and taking these drugs in a different sequence is fine, since we have no idea which sequence is the best and it no doubt differs for the different subtypes, anyway.
The question is why did the I-F fail? We can surmise that your cancer responded to the CDK4.6 inhibitor since 28 months is well beyond what Femara treatment alone would have given you (on average). Because Faslodex monotherapy did not work, the cancer is endocrine-independent, but it may well remain quite sensitive to CDK4.6 inhibition, So, Verzenio should remain on your list for future treatments, whether alone or in combination with something, whenever it does finally get approved there. So, why is the cancer resistant to endocrine therapy? Can you get access to Foundation One or other testing to check for ESR1 mutation or Her2 mutations, etc? And is there a place where you could access some clinical trials? Because we could try to research that, some of the SERD trials and Her2-low etc trials are moving into more global testing...
Cheers to a very long run on Xeloda, here is hoping that Madame X treats you well!!!
PS Also is this a relevant link to MBC trials in Scotland? They have some good ones! https://www.isdscotland.org/Products-and-Services/...
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The kind of relevant other detail is my MO and the UCSF second opinion MO said they would not use Abemaciclib after failure on I/F - at least not at this juncture- they feel that the data didn't support it at this time- I know it has been effective after failed ibrance for some groups - and several studies that show some response. I started Xeloda while very ill and had little choice- and hopefully most people will not be in that situation -they can contemplate their choices. I just hope we all have long enough responses to the current drugs to have a lot of good choices in the near future
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Nkb, That is exactly what my MO said, when I offered that after this I would want to try Verzenio and a SERD, she said "well, actually, No, but we can discuss later", so I suppose they figure at that point when its clearly endocrine resistant its time for something different. I read a paper where a woman was treated with lots of endocrine therapies, including one with Ibrance that went for only five months, and then all the chemos, and then they tried Verzenio alone as treatment number 11, and she got sixteen months from it. So, definitely one can cycle back to Verzenio at a later stage.
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Cure-ious great that you found a link to trials in Scotland! The Beatson is my hospital and I’d requested inclusion in any relevant trials early on, so that’s on my file. I’d also asked when I/L failed why Verzenio + another AI wasn’t an option. Basically they also said not enough data for approval and that trials were being carried out in other countries. They think it’ll be approved at some point but clearly not yet.
Also both my MO and NP told me separately that they have patients who are still stable on Xeloda after 5 years. It’s too early to tell for me clearly....we’re still finding our way through dosages and SEs, to give me the best QoL. It would be interesting to see if it’s possible to circle back to a CDK4/6....if I live long enough and it doesn’t take them the usual 10 years to approve!
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aprilgirl1, my husband and I LOVE the carrot cake cupcakes from Just Desserts!
Brief venting here - why do the phlebotomists try to chat me up about cancer (when they ask why they can't use my left arm and I say because of surgery on that side), and why oh why do they then proceed to tell me about their relative who died from cancer? This has happened a few times now, and this morning I've had to gently tell them it's hard for me to hear that, can we please not talk. I guess I'll just need to start leading with that statement as soon as I sit down, I don't want to be grouchy about it but also really would rather not hear about death from cancer at 7:30 in the morning.
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Cakes, I think sometimes the Phlebotomists struggle with what to talk about, especially if they don’t know you. They need to talk to ‘distract you’ and often folk do like to talk about their stuff and how they are... a bit like hairdressers asking about your holidays! I agree with you, so I try to ask an question about themselves first... before they can get the cancer ‘how are you’ question in. If you’re in so early in the morning possibly try ‘how has your morning been so far?’ And then nod and empathise according to the response. I’ll bet you get a whole load of how shitty it’s been for them.Before you both know it the bloods are done!
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Karen and cure-ious- I definitely want to try abemaciclib at some point! So- hoping that it can be teased out who it would be appropriate for - still seems to be in the realm of “ crapshoot”. My MO has patients that haven’t responded to ANYthing and others who get a good response ( though not durable I suppose) to EVERY treatment.
SF- cakes- that sounds awful. My phlebotomists say none of that and as they draw my 15-3- they surely know. It is the reason I tell essentially no one I have cancer- yes, you potentially get less support- but, you also get no unwanted war stories.
But, when my 7 year olds had “toxic synovitis” the phlebotomist actually said “ I hope it is not cancer” scared her to dealt. What???
Just desserts- market and church Sf- fond memories. They do carry it at Piedmont grocery in Oakland
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Nkb - yes, unwanted war stories are a thing. Same thing as my last post... folk don’t know what to say or think they’re helping. I had to physically sit my MiL down and tell her NOT to tell me about anybody else’s cancer story... she wasn’t helping and in fact she was stressing me out. So just to Stop. She was a bit flabbergasted as she thought she was being supportive, but she did do as asked!
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Karen- on another topic- I just read “Borges and me”by jay Parino. It takes place in Scotland ( true story) and is lots of fun.
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Ah, the heartwarming cancer comments that come our way! The day my subtle next door neighbor saw me outside after the mastectomy she got right up in my face and said with a look of doom, "Did they git it all?" I stopped listening as she rang out the negatives.
I decided right away not to listen to the "My aunt had that and she died a terrible death" stories. When someone would get started I'd hold up my hand and say, "Does this story have a happy ending? I'm only accepting Happy Ending stories today." Then we'd have a good laugh and they could always remember someone they knew who lived well after cancer!
But my dear mother-in-law (rest her soul), a former nurse never once called my cancer what it was. She called it "Patti's little problem".
I met a woman in the treatment room who had her own way of dealing with her "little problem". She was sure if she admitted she had cancer, that made it real (Never mind she was hooked up to chemo!). I was asked by the nurses to come and speak with her in a support capacity one day and she put up her fingers in the sign of the cross to ward me and my evil spirits off! (How to win friends and influence people, right?!)
I love that things have come a long way and there's every reason to believe more and more good treatments are in the pipeline. I expect we'll be here poking fun at clueless people for years to come!
Love from PatGMcGuessTheyDidn'tGetItAll!
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Pat as always you made me laugh! Thank you 🙏.
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Man, they usually can't get me to shut up and then Im yakking away and my blood pressure is in the "about to stroke out" level - last time they actually asked me to stop talking while they retook it! Maybe its the pandemic and its nice to talk to someone else for a change, but like going to the hairdressers I come armed with some conversation topics. Also, in my monthly "cohort" in the waiting room there are more than a few ladies who clearly don't speak english, so I like to be cheery for the nurses because its gotta be a grind doing that all day long especially when having to manage patients they may not be able to easily communicate with.
Prior hospital there was a blood nurse who softly hummed/sang hymns while she drew blood. Im not religious but I didn't mind, it was rather soothing actually and she did her work with a smile.
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SF - how annoying. I like everyone's stories on how to remedy that "little problem." I usually go in and ask the phlebotomist how their day is and hold out my good arm. However, now I don't have to do that - I show them my port.
Today is my first immunotherapy treatment (Keytruda + Lynparza)!! Wish me luck and little to no side effects (nausea, diarrhea, shortness of breath, and increased coughing are the top SE). I'm blazing the path for you gals!
M'wah!0 -
Best of luck with the immunotherapy, Hollyli1202! Really hope that goes well for you.
Thanks everyone for your support with my venting! I intend to chat about TV shows and baked goods at future appointments.
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I had breast cancer 10 years ago with surgery to remove tumour and lymph nodes, followed by chemo and radiation. I was on Letrozole for five years. Now I'm 81 and because of Covid, I could not see a doctor for symptoms of extensive bruising, weight loss and general exhaustion. By the time I was tested, I was told I had only six months to live and there was no cure, no treatment. My platelets were down to 10. That was November 2020.
I was very fortunate to have my case taken over by an oncologist who put me on Ibrance and Letrozole. My platelets are now 148, and I have also had my first shot of Xgeva. I am extremely weak but have no pain. I would like to know if anyone else is on this protocol and if so, for how long and did they get some energy back.
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Thank you for that post! After being told I had six months, it's encouraging to hear I could go on for a while. But at 81, maybe 23 years would be a little excessive to hope for!
However, Hope is the operative word!
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Dear FlotsamCabby,
Welcome to the BCO community. We are so glad that you found us and reached out to join us. We hope that you find support and information here from the shared experiences of our members that will be a help to you along the way. If you are looking for additional information about Ibrance you can check out this page at our main site How Ibrance Works. Feel free to reach out to us if we can provide assistance in helping you find your way around the discussion boards. We are here for you.
The MOds
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Flotsam,
So glad you got a better MO. I've been on Ibrance/Letrozole for 4 1/2 years. It took me 6-9 months to get my energy back-but everyday I tried to take a little walk, and do some stretching. Drinking water and eating well-which for me meant more vegetables and less junk definitely helps with my energy level. Hope that isn't discouraging-my energy built up slowly, so start where you are and do what you can.
Everyone-FWIT-I am going to get my first vaccine on Tuesday (it will involve a 10+ hour round trip drive but that's another story). I checked in with my MO's office which is part of a national cancer center to see if I should stop the Ibrance before or after the shot. They advised me to continue taking it as usual. Just wanted to pass that along since I know others have gotten different advice.
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Flotsam welcome! No pain is great first of all. The thing is to try and look after your whole self now. The drug regimes are very different for us all and folk here are excellent in supporting and with advice.
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Welcome to the Ibrance (and other assorted drugs) Dancers, Flotsam!
I'm on Ibrance/Faslodex/XGeva at age 71 and rocking along with almost 9 years of metastatic disease and 27 total of BC.
Nothing makes me crazier than a doctor telling someone she has 6 months to live. If they really knew things like that, wouldn't some people have 4 months, some 7 and so on? 6 seems to be the magic number!
Once I did know a woman who was "given" 3 months. We had a party for her at 5 YEARS and invited the doctor who made that pronouncement. (He sent a lovely card.) Theresa lived for 3 more years after that.....slipped in the bathroom and hit her head.
I can't wait to hear how much better you get and when we have that 5 year party for you we'll invite your doctor! (Keep your bathroom floor dry.)
Love from PatGMcStartingThe PartyNow!
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I know this is an Ibrance blog but is anyone taking Xeloda? If so, what is your experience - effectiveness, side effects, etc. I am supposed to start taking this next week and appreciate any input. Please reply or PM me.
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Wandering, there is a really good Xeloda thread.
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https://community.breastcancer.org/forum/8/topics/772113?page=1
Try this link. The thread is called "All About Xeloda."
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Wandering - I’m on 2nd cycle of Xeloda. The thread Jaycee posted is really good and I’m in there too. PM me if you want to talk though!
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