Ibrance (Palbociclib)
Comments
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Gailmary- from the trials, for I-F the median PFS was about two years, three years if you had bone-only mets at diagnosis. However, those numbers include all the people who were resistant to I-F and never really responded, and so dropped out in the first 2-4 months. Knowing that you are a responder to the drug combo, should indicate that you can go longer than that average, but how much longer, who knows? Its more important to keep on top of it with regular scans so you change drugs before it gets out of control again, and fortunately we have many other effective treatments.
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Cure-ious,
Do you know if they consider someone with bone Mets and a couple of lymph nodes in the same group as bone only?
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Hi Curious, your explanation about the radiation is really interesting, is there any place I could read a bit more about it? regarding the celebrex I don't think that it would be a good idea for me since i have liver mets. In general I'm trying to reduce using any meds that are not part of my cancer treatment but celebrex specifically can have negative impacts on the liver
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Simone80, that's a good question. I think of myself as "bone only", although I was diagnosed de novo and had a primary breast tumor and a bunch of axillary nodes, in addition to the bones. If the nodes had been remote, I probably wouldn't think it would count as bone only.
In terms of Ibrance results, it seems that "bone only" and "nonvisceral disease" have very similar progression free survival numbers (~ 3 years). I would think you are definitely in the "nonvisceral disease" camp. What would be even more encouraging in your case, is that for the patients with a treatment free interval of more than 10 years, the median progression free survival had not been reached as of the last published results (so it is likely longer than 3.5 years). If you had 5 years of hormonal treatment after your first diagnosis, that means you recurrence was more than 10 years after you stopped treatment - this seems to give you just about the best prognosis in all the subgroups studied in the Ibrance clinical trial.
https://www.ncbi.nlm.nih.gov/pubmed/30632023 - see figure 1B.
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Thanks Piggy!
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Husband 11 the trial you posted was not the one I looked at ..I believe it was this:
https://www.clinicaltrials.gov/ct2/show/NCT0303240...
Its on going..
Simone that is the one I was referring to...
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Thanks Nicole.
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This the trial I have consults for in November. It seems to be going on across the country.
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Husband 11 no problem
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Re: UTI
I remember one or more of you speaking about your recurring UTIs on Ibrance. Jan, in our HopeUp Support Group is struggling and needs advice. Whatever you can tell her will be appreciated.
Love from PatGMc
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Can I assume she is ER+? If so, she can't use topical vaginal estrogen, but if she can, that is the ticket. Moisture is the answer. Just gotta get it deep into the uro-vaginal tissues. It takes time and patience. She needs to use some kind of vaginal moisturizer every night at bedtime. There are many non-estrogen products. I have a whole spreadsheet of the ones I have used with prices, supplier, delivery methods, etc. (You knew I would.) I can't post it because the forum software jumbles it up. I can email it to you or to her. Or I can just list a few. Premeno duo is my favorite. There is a whole thread on UTI's here at BCO. Lots of good info there. I also take something called Uricalm Cranberry with D-Mannose. The problem is not Ibrance but the AI or Fas.
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Hello everyone. My first oncologist gave me 12-18 months, before treatment, based on the initial PET scan alone. It made for a crippling few weeks, until I got a second opinion from a breast cancer specialist, who had no time frame, since she has a patient still on Ibrance, 8 years and going strong. My fingers are crossed! She also called my cancer cells "lazy" based on the Oncotype score of 3.
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Hi everyone,
I can't figure out how to change my treatment settings, but was diagnosed in March with metastatic bc. I started I/F in March and have been doing well. About 6 weeks ago started to have itching/dry patches on edge of lips and spots on face. My oncologist was stumped, nothing seems to help, driving me crazy! Anyone have this? I don't know what I would do without this site, don't talk, but read everyday.
Thanks!
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Marley. I cannot address that specifically, but I have found that my skin overall is much drier on this combination, particularly hands and lips. I am using much more lotion (Aveeno) and a lot more chapstick. I hope someone can help with the specifics.
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Thank you movingsoccermom, it is very strange, the itching is driving me crazy! My mo suggested cortizone cream, which helps itching, but makes the skin feel raw. I have appt. with dermatologist on Tuesday, hoping they will have a solution. I feel like it has to be a side effect of Ibrance, nothing else is different.
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What about an anti-histamine, either cream or oral? I have allergies, so take Zyrtec everyday, which might be mitigating some of those itchy things for me. Some ladies have used Claritine (sp?) for other aspects.
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Hi Pat!!
Excited to see you "online"! I've been following the stories out of ESMO 2019, all good (if not particularly new),,,
Have you been to Sagrada Familia yet? I was there this spring, they have moved so quickly now and it is beyond stunning. I sat in the pews for a couple of hours just to soak up the ambiance and the fabulous stained glass.
also the "paragliding Jesus", so artistic and in human scale, different from the rest of huge cathedral interior
Movingsoccer- Really, somebody got eight years on Ibrance?! must have been oligometastatic...
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marley
Re: Itching!
Yes, it's an Ibrance thing and can come and go like the rest of Ibrance's gifts. I itched and had a rash from below my knees to my ankles and onto the tops of my feet for a long time. It went away but still returns now and then. A red place on the top of one foot has held on for 3 years and sometimes itches like crazy!
Someone in our HopeUp support group went to the ER yesterday with itchy whelps from Ibrance. I'm sorry to say I forgot what they gave her but things had calmed down a lot.
Jaycee, thank you for anything you can offer my friend. My email address is patgmcree@comcast.net.
Love from PatGMc
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Cure-ious,
I wasn't sure I was the Pat you were speaking to but I can't resist answering.
Those PARP Inhibitors keep me excited but one thing I saw in the ESMO releases made me even happier.....the mention of Avastin! When my daughter was diagnosed with Triple Negative BC 11 years ago I spotted a trial with AT and Avastin and passed the info on to our shared oncologist. His researcher mind decided not to risk her being randomized to a placebo so he added the Avastin to her regimen. Of course, insurance wouldn't pay for it so he paid for it himself! No recurrence for her to date! (For anyone interested, my understanding is that Avastin cuts off the blood supply to tumors by blocking new vein growth.)
Love from PatGMc
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Well, sure, how many of our Pats are in Barcelona at ESMO2019?!
Avastin has worked for your daughter for 11 years_ can that be right?!
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Cure-ious, we don't know what worked but she hasn't had a recurrence and she's out 11 years. I've always been such a believer in Avastin, We followed its progress to approval on a giant chart in the Flying Colors Center, long before it had a name. It broke my heart when the breast cancer trial wasn't successful. Years passed and there it was in trial for what my girl had. I think she had six or eight infusions but I'm not sure. God works in mysterious ways!
Love from PatGMc.....not in Barcelona, just reading online. (It's not the same!)
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Pat I had a recurrent UTI for 2 years...after treatment of antibiotics through cauterization (an unconventional nurse practitioner had me do this) it was the only thing that got rid of it..but what has kept it at bay is this:
https://www.amazon.com/Jarrow-Formulas-Fem-Dophilu...=sr_1_4?crid=SJAZVSG5XLCH&keywords=femdophilus+probiotics+for+women&qid=1569843733&s=hpc&sprefix=fem+do%2Chpc%2C123&sr=1-4
but she must take it EVERY SINGLE DAY and only buy the COLD SHIP one NOT the shelf stable after about 3 weeks it will build up and she should be good.
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I am HAPPY TO REPORT...that my new canker sore is going away!!!!!!!!!! YAY!!!!!!!!! I think that dexamethasone worked!!!!!! that and I haven't had anymore hot water and lemon....
Anyway I am SOOOOO HAPPY and wanted to share some positive news with you all since you all have been there for me when the sores were so bad .
Thanks again ladies!
PS can you tell I'm little happy about this ??? lol
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yay Nicole!!!! That’s wonderful!!!!
I totally know the joy and relief of having those painful sores start to go away. They can really make a person quite unhappy and uncomfortable. What a relief!!
Here’s to hoping that this is the end of them for you.
I went through a series of bad ones and now they have seemed to calm down, thank goodness. I still get one or two towards the end of my Ibrance cycle but they’re never as bad as the ones that reallllly took me down.
I’m usually pretty happy go lucky. One was so bad that I called my MO and said, “I am VERY crabby and cranky!” They knew I meant business!!
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I'm not sure if this is a delayed onset SE from I-F treatment, but over the past 2-3 months I gradually developed a still and painful shoulder/upper arm, where I would wake up at night with a mostly dead arm that hurt to move just as if it's been broken- incredible pain. Similar to what is described as a frozen shoulder. The arm will not move to the back or out on the side without pain. Though no injury, I wonder if its a delayed SE of I-F, or some problem of taking stain with I-F (both use the same enzymes to be degraded, so maybe I'm ending up with much higher statin levels in the blood?).
The pain appeared only at nighttime, which means it is caused from inflammation. On waking, I used my good arm to gently move my dead arm around, and then the pain would suddenly quit, and go back to a dull sore. Biofreeze patches helped, heat helped, and I was already taking Celebrex.
I won't see my oncologist for awhile, but as in many states, we can now start physical therapy without a doctors order (limit 12 sessions) So I went in and worked with a therapist on Friday- spent all Saturday in bed from the pain, but its made an enormous difference already. I just wish I'd done this earlier! The therapy involves pulling and manipulating the shoulder-arm joint as well as the muscles around the front and back of the upper arm, and then various stretches to try to restore mobility.
I've had lymphedema and this pain is entirely different. The arm does not get heavy nor relieved by raising the arm or doing the lymphedema massage. I may never learn what caused this, but its a big relief to know that it can be resolved even while still taking the drugs.
The therapist says the presentation is different from what they typically see with frozen shoulder, and in a good way in one respect, because the arm is more flexible and may respond more quickly. I'm putting this out there in case it happens to anyone else, don't hesitate to go to PT, which has helped more than anything else did, and it clearly was not going to go away on its own. Hoping my full range of motion returns, but for now I'll settle for not dreading to go sleep and wake up with a broken arm.
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Happy dance Nicole!!
Cure-ious. Ouch!! I appreciate when folks share unusual events, since you never know when it will happen and this way you can be prepared. I hope the PT continues to help!!
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Cure-ious, I have a similar pain in my shoulder, but since I have already had "frozen shoulder" in the past before MBC, I have been treating it like before assuming it returned. My exercises work and help immensely so I haven't sought extra PT, but if it returns stronger I will take your advice. I don't take any extra drugs and have never had lymphedema so I can't compare, but I do have limited range of motion...Thanks for the help!
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Hello Cure-ious sorry that you have had this shoulder problem but so glad that you have found a resolution with a PT. Like you I have very extensive bone mets and I also have long term osteoarthritis. On waking (well lying in bed anyway as I am a poor sleeper) I am always very achy and stiff. This is certainly worse since adding a statin into the mix in Dec 2018. I do find that PT and a decent chiropractor keep me able to live a normal life. I have a ct scan next week so will find out if I can start cycle 40 I/L. Thanks again for all your great posts
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I copied this from another thread. I has just been posted.
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4 hours ago BevJen wrote:
If you are on Ibrance, go to the thread entitled "Ibrance and Atorvastatin" -- posted by Jackie (sp) -- she commented that there could be a serious reaction between Ibrance and Atorvastatin, and there is a writeup about this that is just plain scary --
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Is anyone still on Ibrance after the Ibrance/letrozole combination failed? After 2+ years, progression was detected on a pet scan and I’ve been switched to faslodex but am still on Ibrance. Is this standard? I have bone Mets which had been in remission. Also as a result of the progresssion, I took a genetic test which showed that piqray might be helpful. Any pros or cons to this drug? Probably the wrong thread to ask, but apparently it’s my decision if I want to take piqray. I’m feeling overwhelmed but mostly confused that I’m still on Ibrance and hoping someone will chime in that they’ve had good results on ibrance and fasodex after failing on Ibrance and letrozole.
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