Ibrance (Palbociclib)
Comments
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Dear Tanya, thank you so much for answering my questions. Your treatment really did have wonderful results, that is so encouraging to know. And it worked even though you were distressed, tell that to the your-negative-thoughts-cause-cancer people !! I am very glad to know that radiation and Ibrance could be interspersed, I have been wishing very much for radiation to be considered in my case, but was told they couldn't do both at the same time. Your improvement is tremendously encouraging. Although for the hip pain, maybe ask to be checked for possible flare up around hip bones ? Hugs
Joyner : thank you for posting that article on talazoparib. I just read the whole article and am finding myself shining up with sun inside, anything that gives us a little more hope ! It does seem like these new discoveries are being posted closer and closer together, as if the race for a cure were picking up momentum. I am happy to know that when Ibrance fails there will be so many new possibilities.
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I am in my first cycle of Ibrance and Faslodex. Spine Mets with nerve pain and now finished 3 of 10 IMRT to back. No issues....
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time for a cure. WOW 31 months of IF without progression? That is the longest I've heard of. Where were your mets?
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Schoolmom, I’m right there with you! Have already had Faslodex, but waiting until after Christmas to start the Ibrance.
Are there any proactive things to do for mouthsores
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The only SEa I have had is fatigue....from meds. Some minor taste issues but that's it. All else has been symptoms of my liver and bone mets.
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Kitty, that is great news! Congratulations! We always appreciate these great stories as it encourages us to hang in there. I just finished round 19 and am doing well other than this is my off week and I am a little extra tired.
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Perhaps a bit of good news for me too : last Friday, encouraged by Joyner, I sent an email to the hospital with pictures of my chest skin mets and as unhysterically as possibly expressed my concern that it is progressing fast. Today I received from my oncologist a prescription for a blood test in the mail with a friendly little note (in French) saying please do this complete blood profile, in the context of a request to join a clinical trial at Villejuif. Not sure what it will lead to, but part of me is hoping it would have to do with abémaciclib. On the other hand, I would really like Ibrance to work, and am willing to wait a few more cycles to see if it will kick in.
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Hi, Just checking back to see how the group is doing. I've been on Ibrance/faslodex since Aug. 2015, with a 5 month break on the Ibrance when I had a liver met removed (my only met). Eventually my CA15-3 markers started going up significantly while nothing was showing up on the scans, but it was decided a year ago, after 5 months of being off the ibrance, that I could start it again. Markers are back down and I find it is easier this time around with SE of the Ibrance. I still have to take a pepcid 20 mg everyday, even when I'm not taking the ibrance. I treated my mild nausea last night (first day of pill cycle) with the sea sick wrist bands and ginger ale and it worked! People around me have been getting sick (colds etc.) and I'm wondering if ibrance is helpful in keeping me well? It does have a drying affect on my eyes (as leapfrog mentioned), as well as my nose, lips and skin. Maybe less moisture less place for germs to go?
Someone mentioned fingers that were losing feeling, well both my big toes have minimal feeling. Anyone have that? I recently had a painful big toe (hematoma) and the Doc was surprised I didn't know about the bruising that was there (must have hit my toe one too many times)! She did a fabulous job of cutting away most of the nail to relieve the pressure and help the infection heal. Got to remember to take care of the whole body. Also is anyone still getting hot flashes? I'm 71 and find the flashes are helpful in this cold weather but they wake me in the night. Warm, cuddley dog doesn't help. Happy Holidays to ALL
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Grannax2 - my met was a singular supraclavicular node on the opposite side from my original surgery. First treated with Abraxane, but no response. It kept enlarging and my tumor markers kept going up. Started Ibrance and within two months tumor markers were normal and node was shrinking. I eventually had it surgically removed, and it was completely necrotic. I did go down from 125 to 100 mg due to fatigue. The reduction made a huge difference. I pray it works as well for all of you, as it does for me.
Kitty
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Cure-i-ous, you're always so helpful in providing further clarity on these articles. I tend (I hope) to get the overall gist but get lost in the medical and chemical details. Thanks for the additional insight!
Kitty, HOORAY!!!
Husband, thanks for the links. I'm about to start exploring them. You must have a technical background of some sort (and you may have told us long ago). Your wife is so fortunate to have you in her court.
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Jaylee...thanks for that. My dose was lowered because of increasing neutropenia. I do have SEs but tolerate them quite happily. At the moment I've just finished my three weeks of Ibrance so I feel very nauseated and unwell but still I can keep going, albeit at a slow pace. I was able to stay on 125mgm for seven cycles before the neutrophil count went below 0.5 at the day 28 blood test and that level is part of the protocol for the trial I'm on.
time-for-a-cure....I LOVE your news and hope to emulate it when I get to my 31st cycle!
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A quick question : Markers - antigène carcino-embryonnaire -- ACE -- do you gals have these measured ? We have always been ignoring my markers, because non-sensical - the CA-13 is still nonsensical but this one ACE is high and indicates cancer - as it should today - do you know about this marker ? the sheet indicates normal values less than 5.0, mine 12.6 -- is this meaningful to anyone ? Merci !
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I'm not familiar with this measurement. My oncologist ignores my markers as they're always low.
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Amarantha, I believe that's the same tumor marker they commonly call CEA here. My wife gets both her CA-15(-3) and CEA tested. For her, both rose as her metastasis grew, and both shrank as her metastasis shrank. It's a somewhat individual experience, tumor markers and cancer status. For some its accurate in reflecting the tumor size, for others, not so much.
CEA is more non-specific to cancer than CA-15(3). It can be elevated for conditions unrelated to, or related to cancer. CEA is often present even when there is no cancer, but its a question of what level. My wife's CEA is currently within the normal range (0-25 for the units we use here in Canada), but she still exhibits CA-15, which I don't believe has a normal range, as it almost always indicates cancer, as opposed to CEA which can be present without cancer.
Here's a quote on the subject:
Benign conditions that can increase CEA include smoking, infection, inflammatory bowel disease, pancreatitis, cirrhosis of the liver, and some benign tumors (in the same organs which have cancers with increased CEA). Benign disease does not usually cause a CEA increase over 10 ng/ml.
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This seems something to be aware of:
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That's frightening. There is too much at stake for this not to be consistent.
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Time for .., congratulations! You are the only one that I heard to be on this Combo for so long. And it stopped any progression. Wanderful!
I hope it will be so successful for me too, but after the first circle my WBC dropped 1.26 and they stop all medication for now . My MO said he would reduced the dose the next time. I wish you many, many years the same result
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Husband 11, I like to read your posts. They are very helpful . I already ordered the Maitake mashroom. Last year we are using Fufang Banlangen Keli tea and was working great with preventing colds. But now I am not sure can I use it again. So I will go with your recommendation. Plus all good reweus
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Husband, do you have a preferred source for the 250 mg of bovine lactoferrin? Thanks-
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We bought Jarrow Formula brand, mail order. It was around $20 for 60 capsules of 250mg strength. No real strong reason as to why we chose that particular brand. I guess price and availability to us. As we only saw positive results, she is going to try 250 mg taken twice daily, and see what impact that has. People have taken it in studies at up to 7 grams a day for 8 weeks. They say around 3 liters of cow's milk would supply 250 mg of lactoferrin. That's a lot of milk. There is a higher concentration in human breast milk than in cow's milk. The bovine form is the most studied. It is supposed to stimulate bone growth and ward off osteoporosis, if so, that's a good thing for a woman on letrazole.
Links to articles related to lactoferrin and osteoporosis:
https://www.ncbi.nlm.nih.gov/pubmed/25154204
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11834...
https://www.intechopen.com/books/osteoporosis/lact...
A quote from the third article, on dosage and safety:
Bovine lactoferrin has
been administered orally at doses of 3g/day for one year in a cancer clinical trial, with some
positive outcomes and no apparent adverse effects (Tomita et al. 2009).
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Kitty, wonderful news, thanks for sharing so we can celebrate with you!
Amarantha, praying that Ibrance works and you can hold abemaciclib in your pocket for later.
Nina, glad you're tolerating Ibrance better this go round. Yes, my fingers and toes are numb-ish, more so in the cold. And hot flashes returned with a vengeance when I first started, to the point where I bought a new mattress with a cool gel top. (I needed a new one anyway.) Now I'm starting cycle 6 and they seem to have settled down, but then again it's winter now which helps!
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Ashlyn, thank you so much for the great info!. I will ask for the Pink lady (sounds better than the red devil!) and that is amazing about somatic BRCA. I will defiantly ask my docs about that. Talked to the radiation onc today. One tumor board said sure go ahead with imrt but he wants to talk to another one next week to confirm. Ah, the waiting. In the meantime, my other onc said if I want to go off Ibrance while doing rads it was fine. Think I will try to stay as long as I can at this party since it seems to be working.
Heading to Michigan for Christmas tomorrow. I wish you all a safe holiday weekend. Stay warm (or cool if you have hot flashes like me!
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Ashlyn: Thanks so much. We hope so too but with all the appointments and the holidays it is on a back burner. Glad you kept some I had four years ago but they aren't viable at all. Hopefully you will get a good surrogate I had friends offering wombs to me too trust me I would if I could!
Kitty: Congrats!!!! That's awesome news!
So I have burped smoke now twice but I know its a less common thing. Most of the time I take my pills together but lately I take the Ibrance after I take my others and with water. I do get sores on my lips when on Ibrance I get a week off then go back on after labs. I have been using carmex, if they are super sore and pretty bad sore wise I use campho phenique and use a cotton swab to dot the ones but they usually go away within a few days. I also use burts bees lip balm too. The fatigue from what my MO has said is basically part of life. Yay.
I went back Wednesday for labs in my new port that they had to use a smaller needle to use right now. Putting the creme on was a trip. On our way to Vanderbilt in Nashville and was trying to one open the bottle (my fine motor skills are okay since the corpectomy in August) but I got it opened then tried to slather this stuff on with half of a seat belt off of me, my reconstructed boob almost out, and trying not to get in on my tank and cardigan and I still ended up doing that. I will get this mastered eventually. Labs were good (some were hit like WBC, and hemoglobin) but good enough to start round 3. I asked her about the link to new clinical of abemaciclib and if it would be a possible down the line. She said yes. If the Ibrance fails it can be a possible down the road. I did get the CT result a month later and my T-7, L-1, &L-4 lesions have shrunk and the bone is healing from where the tumor was trying to penetrate more of those areas. My T-4 the bone they put in is healing also so good news on that front! I met with my spine surgeon so I will see him in four months yay! Hope everyone has a wonderful holiday!! Will catch up soon!
Chani
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hi ladies
I have a mass close to my right Ovarie which till last week i was told it was a fibroid. Long history short i push to get a second opinion met a wonderful dr. Who then agreed to take it out. Waited 3 months to have the so call rutine surgery then he told me I had ovarian cancer and that it spread to my peritoneal and liver and .... in 5 places
Then yeterday I met the gyno team to talk about my options when they saw the results from a liquid biopsy the surgeon took on Dec 13th . This doc said " oh this is not ovarian cancer this is BC mets so not a gynecology issue " I was so confused they called my onco from bc and sent me there to talk to him . He then said they can't do a surgery. Basically I was told there is no cure for you so no surgery you must just live with your tumors for now.
I will start 3 drugs to shut off my ovaries. So i asked why not remove the ovaries ? And I was told is not an option. I am so sad and confused
Anyway just wanted to thank you all for the information in this tread another member pointed me here.
The other 3 are:
Palbociclib,
Goserilin azetate implant
and Letrozole tables
This morning I ll do a blood test then go get the Goserilin implant and the letrozole tables. Then in a week start the palbociclib if my insurance company acepts it.
Thanks again for sharing all your experiences with these drugs
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Folks, Enerva and I have been chatting on a different site this AM, and I suggested that she join us.
Enerva, we saw an article recently which caused a bit of concern about the accuracy of certain liquid biopsies. I wonder if a different biopsy might be in order before final decisions are made about the mass or if this article is worth discussing with your doctor(s)?
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cchilders. I read your post and was surprised when I saw that you have had a corpectomy. You're the only other person I've known who has had one. I had a C3 corpectomy back in 2000. I had BC mets only to C3, no other places in my spine or anywhere else. I was lucky back then to have only one, I see you have several in your spine. Although, C3 is a critical vertebrae. They did corpectomy w strut and graft, etc. So I have a fusion and lots of titanium in my neck. How long ago did you have yours? To what location?
Fortunately, my MBC never came back in my bones. A year ago it was found in my lung, chest and liver. So in some ways I am a 17 survivor of MBC.
I remember having trouble opening jars, etc. After my neck surgery, too. I had a complications after surgery and couldn't swallow for awhile. Probably because I had just finished radiation to my neck prior to surgery. Then I was only allowed to have thick liquids. I ate baby food, etc. I remember telling my doc I couldn't open the baby food jars. I think he laughed. I can envision your episode in the car very easily.
I know how long it takes for bones to heal, but I'm glad you got aggressive treatment for your spine mets. Now, Ibrance can do the rest.
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hi friends,
Today I called my breast cancer surgeon from 2013 and the secretary said in the msg that they are close till Jan 08th. I will call on Jan 08 to get an appointment. I want the surgeon s opinion. Maybe she can agree to have a deeper look at the mass. I ll try to see her so she can tell me if she agrees with the Mo or if she think she can biopsy and for sure confirm that the mass is no from the ovarie. I am so tired today I was at the hospital from 7am till 12pm just getting the prescriptions then the inyection and boy that hurts. No sure how to get use to that needle. The nurse was very nice though.
I ll now hope for no SE.
Thanks for the lync
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WOW....here's the latest from "Constantine"....this response at the bottom is Constantine response to the following comment on Inspire re Verzenio (abemaciclib):
Questioner:
If I understand this correctly, there is an OS survival gain of 4 months up to 17 months. Is that all???😕😕. I hate to complain, but this Is so puny. And I am sure that Big Pharma is charging an outrageous amount!
Constantine:
Correct, you are not understanding it correctly.
First, the advantage was over the former champ of overall survival - against all agents - in later-line settings, namely eribulin (Halaven), not just any old agent. Given that eribulin itself was - to take one example - vastly more effective than any taxane ever tested, both paclitaxel (Taxol)-based and docetaxel (Taxotere)-based: the objective response rate (ORR) was more than double that of taxanes, and the median OS was also almost double [Kikuchi et al. Ann Oncol 2016 December] - and in other studies also more effective than capecitabine (Xeloda) which I might add has never provided a survival advantage in any study (only PFS, not OS), and a number of other chemotherapies, the fact that abemaciclib (Verzenio) outperformed eribulin (which outperformed etc., etc., etc., . . . ) on both response rates and survival outcomes, THAT is impressive, although granted it would look more impressive if it were trialed directly against those agents, where the survival spread would be even greater.
Second, you are definitely a tough "sell": since the outcomes I cited below outclass in survival compared to historical controls any oncological agent ever tested, you would be hard "audience" to play in front of!
Third, don't misunderstand MEDIAN survival: 50% of the patients achieved survival considerably in excess of 17 months (many out to several years). As I have long argued and demonstrated, medians are a singularly execrable way to report survival statistics.
Fourth, and all this was in heavily pretreated post-third line / later lines (out to 7 - 11 and above lines) settings where no agent besides eribulin (and now Verzenio) has EVER delivered an overall survival benefit!
Five, you can't get a survival benefit unless you are a responder, but historical controls with any other agent achieve at best only 10 to 20% clinical benefit rates - less than half of that achieved by single-agent abemaciclib.
Sixth, responses with any of these other agents have been of short duration, while abemaciclib (Verzenio) delivers durable outcomes.
Seventh:
- Not to mention that it is more tolerable than conventional agents, especially conventional chemotherapies,
- AND these results are for just single-agent (monotherapy) abemaciclib (Verzenio),
- AND it crosses the blood-brain barrier to reduce risk of progression to the brain or leptomeningeal system,
- AND we can combine it with aromatase inhibitors (AIs), with PD-1/PD-L1 checkpoint inhibitors, with chemotherapies, . . .
- AND it is immunomodulatory,
- AND . . .
BOTTOM LINE: Abemaciclib (Verzenio) was not just an incremental advance in the progress of breast cancer therapeutics, but a game changer in clinical practice (for any oncologist paying attention).
And the day is young.
Now I'll get off the stage quickly before I have to duck some tomatoes!
Kind regards
Constantine
Constantine Kaniklidis
Director, Medical Research, No Surrender Breast Cancer Foundation (NSBCF)
Oncology Reviewer, Current Oncology [journal]
Society for Integrative Oncology (SIO)
Member, European Association for Cancer Research (EACR)0 -
Enerva...Welcome to our group of supportive friends, although I'm very sad for you that you find yourself in this situation. I can't really offer any help or advice but I can tell you that JoynerL sent you to the place you need to be right now.
You may find some SEs from Letrozole and Palbociclib/Ibrance but they're not disabling and you do get used to them. I hope you get a good response with them. I'm on the same combination and I'm coming to the end of my tenth cycle.
Keep us informed of your progress and how you get on with the phone call on 8th January. Best wishes
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JoynerL - thanks for posting the response from Constantine. That was very interesting. A little scary but often reality is. Abemaciclib (Verzenio) is on my short list of next treatments. The biggest issue I had with it was the diarrhea. But perhaps that can be controlled with immodium.
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