Ibrance (Palbociclib)
Comments
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Rabbit - I hope everything stays stable. those images...... different radiologist might measure them in slighty different areas was an answer I got what told overall looked better but seemed to be larger......... I'm hoping a gastrostromal tumor first detected in August was the result of being very constipated, perhaps a bad image. Constipation seldom happens to me. I was encouraged to have surgery ASAP since it had never been detected before and was assumed to be very aggressive. I am waiting to see what the next scan sees scheduled first week in January. I seem to be otherwise asymptomatic for the tumor as far as any pain, twinges digestion etc. I had one removed in February which had been there for years. Surgery was recommended then because it was starting to constrict the bowel.
Low neutriphil count - my oncologist is suggesting I only take 75mg. It did not pick up as expected when it was dropped from 125mg in Sept to 100mg. If Dec blood work still shows no improvement it is probably time to drop it again . I just got another box of 100mg so would not start the lower dose until January. I do not have the fatigue I expereinced when first starting the 125mg dose. But with Covid still running rampant having a healthy immune system is even more important
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I met with my MO today and asked about the Covid vaccine. She said she definitely recommends it and feels the Pfizer one would be best for oncology patients or otherwise frail people, since it’s not made from actual Covid cells. She didn’t mention the Moderna one and I’m not too knowledgeable about it so I didn’t ask about it. She went off on some tangents about herd immunity (possible to achieve if we combine 20% who have had Covid with approx 50% taking the vaccine) and stressed that if I’m sick with anything to let her know and she’ll most likely stop the Ibrance to help me recover.
I also asked about my low neutrophils and restarting ibrance in the 750 range, which I’ve done for 2 cycles now. She said she rarely holds back anyone who is anywhere near 1,000. I have never read about this, but she said she also looks at the monocytes levels and counts them toward the neutrophils since monocytes are developing neutrophils, like baby neutrophils. I had about 250 for monocytes so it did add up to about 1,000. Still, very new to me!
This is only my second appointment with my new MO after my previous one retired in July. She said she wants to order a Pet scan to get a better look at my liver mets. It would be my first pet scan. She’ll be reading up on my history and try to make a case for the insurance. Ct scans and my last mri haven’t shown much in my liver for a while now and she thinks it would be good to try ablation (of some sort) to get rid of whatever is left. All that is dependent on what shows up and what is recommended by an interventional radiologist. I’ll be interested to hear what happens next.
I read here all the time and have learned so much from everyone. Cure-ious, thanks for the all your info. I sure hope Faslodex could pair with Ibrance as next in line.
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Hi All - catching up:
RRabbit - congrats on good results, stable Mabel! Such great news.
BevJen - omg - of course it would end up in the disposal! Smart move to not retrieve it but these are so pricey.....I am always leery trying to "pop" them out (I use a steak knife as a tool). My 2 labs will truly eat anything.
SondraF - I had not noticed that but yes, we started Ibrance on just about the same date/year!
Cure-ious - great info, as always.
Hope all of you are doing well - Seattle is enjoying sunny skies for this week which is just gorgeous!
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Rosie - thanks for the feedback, that is all really interesting! Moderna is a similar technology to Pfizer with the mRNA, so I think one or the other would be ok. Sounded like a very positive meeting all around for you.
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Rosie- Thanks for sharing info about your MO's recommendation about the Covid vaccine. I just heard on my local newscast that with the Pfizer vaccine needing the super low temp storage it would probably go to urban areas for distribution. Makes sense. Need somewhere special that can house it at the low temps. So... I live in a rural area. Sigh.... But, as Sondra said, the Moderna one is made the same way- with the mRNA- but doesn't need the cold storage.
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Candy - you may want to check with the MO at your larger center if they will have a program for patients.
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Rosie, Thanks for that information, I was just wondering today what level of vaccination we would need to get some herd immunity, and then you answered it! Because unfortunately there are plenty will not take it, or want to wait for others to go first. I like your new MO, she seems really on top of things!
Here is a link where Bardia discusses what treatments MOs would consider for three patients (ER+, TNBC, and HER2+) when they encounter progression...
https://www.onclive.com/view/bardia-brings-clinica...
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Cure-ious,
Thanks so much for posting that Onclive article -- it's quite informative and actually quite on point with my own situation (re Case #1). I'm going to pass it along to my oncologist.
I often wonder how much our oncologists are able to absorb with respect to this kind of information. Between treating patients, running research studies, attending conferences, working on publications, and reviewing current literature to see what is clinically relevant, I can only imagine that they can absorb just so much. Not sure what other folks do, but I try to send my oncologist articles such as this just to make sure that they have seen them and identified them with my own situation (as well as to help others).
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Cure-ious,
Thanks for posting that article. I had never heard of nerlynix before. So now I am guessing if I have progression I'd be taken off of Ibrance/Letrozole and put on Faslodex/Versenio and Nerlynix. I won't worry about it until the time comes but it's nice to know the options.
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Chicagoan- Nerlynx is used for HER2+. It sounds like the patient in the study had tumor genotyping done when she went metastatic. That testing revealed a HER2[ERBB2] mutation. Presumably that is why Netlynx was an option. At the moment, I don’t have that mutation so I guess I can cross that one off the options list
Cure-ious - Thanks again for the informative article.
So here’s my question - I will ask my MO at my next visit, but wanted to hear from your experiences. After stage 2 treatment, I took Tamoxifen until I was DX MBC. So my FIRST line of treatment was Fulvestrant/Ibrance/Zometa. If I should progress and Verzenio is an option what backbone would I take? Is my only choice to stay on Fulvestrant?
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RK2020,
I don't know the answer to your question, but I was originally on letrozole alone from 2006-2019 as treatment for a single site metastasis found in 2006. When I switched treatment, we went to Ibrance/fulvestrant. However, my MO has mentioned various drugs over the past year and a half, including exemestane, which I have not been on yet, and also continuing on fulvestrant with another drug.
Also, nerlynx is not only used with Her2+. Nerlynx, or neratinib, is also used for ERBB2 mutations. I have those mutations, but I do not have HER2+ or HER2 amplification. I just have the mutations. Neratinib is one of the drugs in my list of possibles when Ibrance goes out the window. Also, Shetland pony, who some of you may recognize from other of the boards here, has an ERBB2 mutation and is in a Puma trial which includes neratinib.
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RK2020-Thanks for your explanation. Now I know why I haven't heard of it before!
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Fulvestrant seems to be my only option as second line, disappointingly.
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Thanks BevJen. My “northern” MO laid out a very general treatment roadmap last May. Although I feel he is competent, he’s a generalist. And I’ll be honest. When he started spewing out lines of treatment, I can’t remember all of his recommendations. I was still an MBC newbie and was just thrilled to hear I had options before having to start chemo. Now that I’m back to seeing my Florida MO who specializes in BC, I’ll be curious to get her thoughts on a general roadmap. I know I don’t have the PIK3 or ERBB2 mutation.
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RK2020,
My MO at Hopkins brought my whole situation, as well as my F1 reports, to the molecular tumor board at Hopkins, and they came up with a plan. Not every institution has this kind of a group, but I'm sure that there are knowledgeable groups who talk things over about sequencing of treatments.
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public service announcement (cross posted with liver mets):
Living Beyond Breast Cancer has a webinar post-SABCS about "new treatments for metastatic breast cancer." It's via zoom, but you must register;
https://www.lbbc.org/programs-events/ask-expert-ne...
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I really appreciate the link to the Onclive article. I read it several times and learned a lot. After each time, though, I feel like I have a greater insight into the medical professionals' mindset. The expert is so distant, passionless, and removed from the fact that he is discussing real women with real lives. It made me feel like a piece of meat. Like you have chicken for dinner and are trying to decide if you should fry, bake, or broil it. Side effects ("adverse events" - how to distance yourself from side effects in two words) are an after-thought. Progression-free survival is an after-thought. Overall survival is an after-thought. Those are the things I care about the most. But I guess if your audience is oncologists, you need to speak to them in their language and at their level of emotional involvement. Which is none. I get it. This is a professional speaking to professionals but it makes me feel so left out. I wonder if any of those three women are still alive.
Cure-ious, you know I love you. We've been at this for about the same length of time. We've been reading and posting to this thread for all of it. (Me a lot less recently.) You have provided so much valuable information. It's priceless. My mind just goes other places. I hope no one minds, especially you. And maybe someone will feel some connection to what I've said.
This post sat for a while before I could click submit. I decided to check with Cure-ious and she said she has felt this way, too, encouraging me to "post away."
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Jaycee,
Thanks for your post. Upon reflection, I can see EXACTLY where you are coming from. As you note, though, this is the world of medicine, I think. They dwell on statistics and trends -- the "science" of it all. While I believe in science, strongly, like you, I often wonder where the humanity and emotion lies in all of this.
Interestingly, I forwarded that article to my MO, who had not yet read it. Her response was: I will definitely read it -- and then she told me that the doc who wrote it had been her Fellow at some point in his professional development. Putting that together with your comments tells me a lot. Maybe that's why I feel sometimes like I cannot break through in our conversations.
I definitely can relate to what you are saying.
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Thanks, Bev. I was afraid it would not be well received. We have talked about whether we would rather have an MO who is up on all the research or one that has a good bedside manner. I ask, why not BOTH?
While sending articles to your MO, send her this. I'm going to post it in the death and dying thread.
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Thank you, Jaycee49. This is a wonderful article. My husband and I have had this discussion a few times and were talking about it again last night. We had just spoken with a neighbor whose mother in on her second cancer diagnosis with her second round of aggressive chemo. She's miserable and her family is miserable. I don't want to ever be there, nor does my husband. I think that our families (my father and my siblings) value life over QOL. Hard discussions, but necessary.
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I just want someone for once to go for the gold rather than what seems like a lot of incremental moves. "oh, if we recombine the medicines THIS way that means an extra three months... for some!" And of course the published paper and rounds of conferences.
Then again,sometimes I think when you have to work all the time knowing that who you are interacting with is dying, maybe you need to take a step back and put up that wall to preserve your own mental ability. It doesn't make it easier for either party, though.
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Jaycee,
I agree. This is a great article. It was also written by a nurse/educator who, prior to her retirement, was an integral part of my breast center. As she notes in the article, she now does metastatic BC retreats for MBC patients. I've never attended one of those, but when I was first diagnosed, I attended one of her retreats for folks who were within a year of their BC diagnosis/treatment. It was such a hopeful and wonderful experience of life, while fully acknowledging that we were all facing a very difficult illness.
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Question-- I receive emails from OncLive. I don't know how I initially got on their email list. But there is a Zoom webinar coming up about MBC and a link to register. Can we (lay people, patients) attend? I clicked the Register button just to see and it wants my name, address, etc and my company's name. Anyone attend these things from OncLive?
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Jaycee -
1 - Yes, the mindset of some in the medical profession makes me feel like I’m just a job and not a person. Like they are treating just a disease and not a person suffering from this disease. Some months back when I was struggling on Ibrance (low ANC and many SE), I spoke with someone on the 5/2 study. When I mentioned that I was not looking forward to switching to Verzenio because of it’s SE profile, I used the phrase that Ibrance was the devil I knew. Although this lady was very nice, she clearly took offense and asked me in a snippy voice why I would say such a thing. I bit my lip but I really wanted to tell her that she is clueless to how SE of these “miracle” drugs can impact a patient’s QOL. And for me, it’s all about QOL.
2 - The PracticeUpdate article was excellent and one that I missed. So thank you for including it. So many of the thoughts in this article struck a chord with me. These are things I’ve been saying about the medical profession in general but they are especially pertinent to oncologists. My MIL and FIL both died of cancer in an ICU. Why, why, why? I was the medical decision maker for my mother. She did not die of cancer but when she decided to stop taking her meds at the age of 92, although initially shocked, it didn’t take me but a few minutes to realize she was right to make that decision and I supported her. I explained it to my siblings in a way that they too could understand the logic. When it became clear that her body was shutting down, her assisted living facility sent her to the hospital but I was able to stop any invasive procedures on my then 94 yr old mother and get her the hospice care she needed. And wow, I can never say enough good things about the hospice care she received. The care she received AND the support they gave me.
3 - Just yesterday I mentioned to my husband that I was considering donating my body to science. He told me he wasn’t ready to talk about it. Well, I planted the seed and I’ve got time. He will be ready to talk one day. I just have to give him some space
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RK2020, Just circling back to your question, sure, you can move from Fulvestrant to Letrozole or any other AI backbone at later stages of treatment, there isn't a prescribed sequence, and Letrozole is a strong drug- you'd want it in the mix at some point
BevJen, thanks for the link~! will check it out
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Jaycee _ recently told one health care provider that I was starting to feel like a lab rat. I think your description is more on target ".....feel like a piece of meat. Like you have chicken for dinner and are trying to decide if you should fry, bake, or broil it. Side effects ("adverse events" - how to distance yourself from side effects in two words) are an after-thought. ". I guess their job is to cure the person of cancer, but it seems like the "person" gets lost in the tumor. The professionals seem to have a lot more confidence than I do in treatment options even with the SEs, and lack of real metrics. "The Cheating Cell" -Athena Aktipis , does not offer a cure but does suggest we approach cancer differently, learning tomanage and live with it a some level rather than eradicating it. Scale treatment up/down continually since trying ti eradicate it with maximum treatment only spurs it to mutate.
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Jaycee, on the money as always. Not everyone appreciates your take, but many of us do. Me amongst them. in fairness I think if the professionals didn’t distance themselves they would probably break living in this world....
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Jaycee, you are right on the money as Karenfizedbo15 said! I appreciate your opinions.
Just saw my oncologist, just had my 1 year "Cancerversary" of Stage IV and Ibrance. Happy to say that I feel much better than I expected on Ibrance/fulvestrant and a heck of a lot better compared to when I was dx last fall. However, even on 100mg dose my neutrophils are .74 on day 28 so I will skip a week (retest blood next Wednesday). I will lower my dose to 75 mg because every 3-4 months I need a break and she doesn't like that. OR, I move to Verzanio. No thanks. I had significant reduction of mets shown on the first petscan after just 3 months of Ibrance and NEAD on the last 2 petscans, plus I feel good on Ibrance so I would like to ride this for as long as possible. I mentioned the 5/2 schedule that Candy is on and "it is not standard of care" and dismissed it. I am at a large cancer center so I was disappointed with her response as it seemed like she hadn't heard of the 5/2. I will look through this thread to find the study so I can send it to her.
This is an oncologist that I was assigned to in a flurry when my stage IV came about (original MO is retired). Re: Covid, she seemed reluctant to say much which was also annoying but it seemed like she had been asked about Covid a lot and has no real answers as far as when the vaccine will be available. Definitely recommends the vaccine as long as it is not "live" and the pfizer one is not but no idea when it will be available to us in Washington State or to patients.
I would like an oncologist that is creative and smart and not "put off" that I am smart and have smart "friends" on here who research and read a lot about our meds/stage IV and all of this. Sigh.
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Thank you Cure-ious. Although I never read this specifically, it seemed to me that Letrozole was taken mostly by pre menopausal women. I’m glad to hear that it’s still a tool in my toolbox.
BevJen - thanks for the LBBC link
And to all who post to this board - I just wanted to thank you for the outstanding fact based medical education you have helped me obtain. I’ve come a long way intellectually in less then a year. And your emotional support cannot go unmentioned. You helped me through my initial diagnosis slump and shock. I belong to several Facebook pages, but this is my favorite go-to spot for the facts and realistic optimism. From the bottom of my heart - thank you.
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Aprilgirl- Here is the link for the San Antonio Breast Conference Abstract that Cure-ious posted a few pages back. The 5/2 info is on page 67. Sorry your MO dismissed it. The Conference is Dec 10, I think. Maybe after that, he/she will have heard more about it and be more open to using it.
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