Ibrance (Palbociclib)
Comments
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From WebMD:
How the interaction occurs:
Grapefruit and Seville oranges may slow down how quickly your body processes your cancer medicine.
What might happen:
The amount of your cancer medicine in your blood may increase and cause more side effects than normal.
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My scan in May showed some progression and I've had more pain in my breast and lymph node sites than usual. My oncologist and I talked about switching to weekly Taxol next month, after one more Ibrance/Faslodex cycle. This will be my first chemo, after 5.5 years of antihormonals. I'm sad.
At least this will help my SSDI claim, which was denied 3 weeks ago. I will appeal the denial and submit new med records showing the change of tx.
Does anyone know what chemo for the rest of your life is like when you live alone? I'm so afraid I'll get too sick to look after myself.
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BevGen, so great to hear your good results. TMs may not be insurmountable.
I agree that we need to be our own advocates and call to get answers. No one else cares as many ch as we do
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NineTwelve- I am sorry to hear of your change in treatment. I wish I could help you with your questions about the Taxol. I have not had that yet. I do live alone also. So the fear that we can no longer care for ourselves is a real one. I am giving you a gentle hug right now.
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NineTwelve, I'm pretty sure MBC automatically qualifies you for SSDI. I found a bunch of articles by searching on "SSDI and MBC." This is one but there are more. They should not have denied you.
http://mbcn.org/2017/02/ssdi-and-metastatic-breast-cancer-an-overview/
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9-12, I would definitely get a second opinion. There are several different faslodex combos you could try, to see if endocrine resistance can be reversed. Moreover, it seems from these boards that those who do move to chemo usually start with Xeloda, a pill with fewer side effects- sometimes halaven, but it seems more often its xeloda. And for sure you should have genomic testing to see if there are PI3K or other actionable mutations, no? I haven't been reading carefully so I may have missed the discussion behind picking taxol...
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Cross posted with bone mets thread:
Questions for you bone metsters:
Has anyone had a radiation oncologist look at all of your scans together to come up with a comprehensive overview of what they see? I know that when you have a scan, let's say a CT, the radiologist reading that new scan will look back to the most recent CT and sometimes another relevant test or two. (How do I know this? because they say this on their reports -- but also they sometimes pick up the language of the preceding report.) But I'm wondering if anyone has had a more comprehensive view of their scans?
Here's why I'm asking: I want to have an RO look at ALL of my scans together to determine whether or not SBRT would be appropriate on any of my bone mets to zap them away. I don't really have pain other than intermittent pain when I've overdone stuff-- I know they will treat with radiation for pain -- and as far as it appears, all of my bone mets are sclerotic. I just want someone to focus on the last two years, say, and tell me what they see -- aside and apart from those written reports that we get. I know for sure that my MO only reads those written reports -- I doubt if she's ever looked at an actual scan that I've had.
Thanks for any info you guys can provide.
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Candy, It is my biggest anxiety that I will be so sick and with no one to bring me a glass of water or clean up if I vomit. I guess I'll cross that bridge when I get to it. So far, stage IV cancer de novo has not been has hard as it looks in the movies. (Knock on wood.)
Jaycee, Here's the quote from my determination letter: "You state you are unable to work because of Stage 4 Breast Cancer. After reviewing all the medical and other information available, we have determined you currently have the capacity to perform work you have done in the past as a clerical. In making this determination we considered your description of how you performed the work as well as how the work is normally performed in the national economy."
There is a compassionate allowance for Stage 4, but if you read the fine print, they can decide that you're not sick enough to be disabled, and that's what happened with my case.
Curious - I was tested for that mutation, but I don't have it. The Taxol may be just to knock back whatever growth has happened and then we will go back to an AI, because he did say something about going back to an AI, or the same Ibrance/Faslodex. I'm having trouble remembering exactly what we talked about. I'm struck by the fact that everyone I've talked to about my treatment has questioned my Onc's decisions: my GP, naturopath, the radiologists at my imaging center, nurses, my acupuncturist, people on this board, and some others I've forgotten. Damn, sounds like I really do need a second opinion.
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9-12, I agree with getting a second opinion. I thought they normally started with xeloda, saving taxol for a later time.
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RRabbit and Julia, I am so frustrated at both of your situations at the hands of other people NOT doing their best by you . Makes me feel so dependent on other peoples whims and moods. Obviously, humans make mistakes but I have also been let down by my top rated cancer center when I had symptoms and was ignored as it was "statictically improbable that I had a distant recurrance". Yet, here I am.
I see my onc every other month, her Oncology Nurse Practioner every other month so they alternate. I always see my onc after a scan (next week). So far this schedule works because the 2 of them work well together.
Nine Twelve, I can't believe your SSDI was denied. I hope you can reapply or challenge that decision. I also agree that a 2nd opinion on your next step is a good idea. I am sorry you have had progression.
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Nine-Twelve: You shouldn't have to fight to get SSDI. I was approved as soon as I was diagnosed 3 1/2 years ago but had to wait a few months to collect benefits. I was able to continue working part time on SSDI until Covid when my MO and my boss felt a medical leave was best. And I've been able to get unemployment. I don't understand how they can deny you with stage 4. There are days during some treatment when it's very hard to be able to work. I just happened to have very understanding co workers and supervisors.
I too have just had progression. I was on Ibrance/letrozole. Dropping letrozole and trying Faslodex with Ibrance. I also feel the twingy little pains in my breast and armpits. Very unnerving.
But I hate to think of anyone feeling alone going through what you are going through. You have people that are here to listen and offer whatever helpful information they can. Thinking of you and everyone else here in these stressful times.
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NineTwelve, for info on the weekly taxol protocol, there are several thread on BCO that deal with that. I did a search in BCO for "weekly taxol for mbc" and found a few hits. The one with the most recent activity was called "weekly taxol for stage IV."
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9-12, I really would double-check, because those harsh chemos can be pretty short before the cancer mutates to something much more aggressive, and getting back to endocrine therapy may become harder
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I'm posting more press-releases about the exciting new type of immunotherapy published this week in Nature. (Research is from a young assistant professor -MD/PHD- at Yale, thank goodness next generation of scientists! Check out the first link- he totally looks like Alfred E. Newman of MAD magazine!: "What, me worry?!")
He isolated a rare variant of cytokine IL-18 that escapes a trap that that cancer cells pump out to inactivate the normal IL-18. The modified IL-18 stimulates natural killer cells and stem-cell T-cells to attack the cancer, circumventing one major way that cancer cells hide from the immune system.
Testing his variant IL-18 as a drug, he discovered it has strong single-agent activity, comparable or better than standard immunotherapy, and when tested in combination with Keytruda it effectively cleared out most or all tumors for various cancers in mice. Maybe this could be the thing that lets all of us respond to immunotherapy?! They plan to begin clinical trials in early 2021..
https://endpts.com/yale-spinout-re-engineers-an-immunotherapy-gsk-others-once-abandoned/https://www.fiercebiotech.com/biotech/simcha-debut...https://news.yale.edu/2020/06/24/blocking-jamming-...
https://www.tullahomanews.com/news/business/simcha...https://newatlas.com/medical/synthetic-immune-cell-interleukin18-cancer/
https://www.oaoa.com/news/business/article_ff0327a1-6ec5-500b-ad0c-259d2e8d78ab.html
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Ninetwelve - I am sorry you are going through this. Is an appeal of the SSDI decision an option? Is there a patient advocate / nurse navigator who can at least help with paper work and finding someone to help you. Chemo takes its toll. Years ago a friend set up something on a "helping hands" type of list where friends could sign up to help on days I had identified. More recently I setup a signup on "Mealtrain" for a friend whose spouse died unexpectedly. Have you or your MO looked into clinical trials that you might be elligible for? Cure-ious worte about chemo/mutations/ and making it harder to return to endocrine therapy. Time to ask questions, look into second opinion, clinical trails. Wishing you well
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Regarding limes, I found this:
https://www.remedys.ca/en/article/health/medications-and-grapefruit
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JACK5IE - Thanks for the lime link. It was interesting to see the other fruits to be cautious of and the quantity of grapefruit juice that can cause an issue.
That being said, my carne asada was AMAZING and only two limes for 2.5 lbs of meat so my exposure was minimal. Of course, there was soy sauce in the marinade too and that’s probably not doing me any favors. Geez. 😞 Oh well, I want to enjoy life too! Everything in moderation, right0 -
Tablet vs Capsule . So no food required for tablet, but was important for capsule. Reason asking, this might be important for supplements. I asked a pharmacist at the specialty pharmacy that sends it, what changed, and he did not understand my question, and kept saying the active ingredient did not change. So I asked my MO. She speculated that maybe stomache acid from digesting food was needed to dissolve the capsule. Does anyone know? I take several supplements, some as tablet other capsule, none discuss taking with food.
Seville oranges - I've also been told to avoid since they are an orange-grapefruit cross. But I've never been cautioned about limes or other citrus. I will have to check the article Jack5IE sent, would be nice if "some" amount is ok.
RK2020 - always looking for good Mexican. Are you willing to share recipe? Maybe as personal message
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Julia, I have no words. What you went through is beyond words sufficient enough to emphasize the complete horseshit you went through. It makes me all the more determined to make some waves at next appt in regards to what happened. My mistake circus while not fun was peanuts compared to what you've been through.
Jackie I want to report on and confirm odor and taste in regards to the tablets. My second, third and fourth dose not only smelled going in my mouth but have gotten an unpleasant taste afterwards each time. Since I'm a mostly water drinker ( wish waistline would reflect that) water didn't get rid of the aftertaste so now I chase it down quickly with a bite of lunch.
I want to note pushing those tablets out of the packaging out of back varies on levels of challenging. Can't imagine having arthritis and trying to do it. Overall while "pretty" I can't say I like the new packaging nor find it convenient.
I do find the tablets do not interfere with muffin cutter productivity. This morning I was awakened to reveille
Love to you ladies
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I'm a little concerned that maybe I wasn't getting the full benefit of my Ibrance since I wasn't taking the capsules with food. I usually took it an hour or two after lunch but not within 30 minutes most of the time. So my stomach wasn't empty but it definitely wasn't full. Does anyone who might be versed on the way prescriptions metabolize know if I was still getting benefits of Ibrance if I wasn't taking with food all this time?
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I woke up this morning looking like I had a tennis ball in my cheek! I can't tell if one or two teeth are involved. I called my dentist (I actually got him on the phone using an emergency number his office gave me). He will prescribe Amoxycillin right now and see me on Monday. I have no idea how this works when I just had fasoldex and xgeva shots and am on Ibrance. Has anyone had teeth pulled or other extensive dental work done in similar circumstances? I will send a note to my MO
Thanks for any feedback. Teeth are a pain in the rear!
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I can tell you I asked my oncologist about getting my teeth cleaned because it's been a year. She prescribed me amoxicillin for a day before, the day of, and the day after. I haven't set it up yet. I would be staying on the Ibrance. That's not nearly as extensive as you're having, so I'm sure your oncologist will let you know what to do. I hope you’re not in too much pain.
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Lee64- Sorry you are having dental issues. Those are not fun. Each MO is different concerning the dental thing. With all the issues I have had about my low WBC/ANC numbers, and my MO freaking out about them, she said I could get my teeth cleaned without pre antibiotics. Go figure. So I hope they can get you out of pain and back to ok without too much issue with your cancer meds on board.
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Lee64,
Wishing you well on the teeth thing. Nothing worse than having your mouth hurt.
My MO said okay on the teeth cleaning as well, without antibiotics. She said to try and get teeth cleaned on the week off of Ibrance, but then seemed to not think it was that important to get it scheduled then. Again, interesting that different MOs have different perspectives on this. I actually need a cleaning but have not done one because of the coronavirus, not current treatment for cancer. But that's just me.
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Cure-ious, thanks for the info and links! Very exciting! I'd seen this too from the University of Cincinnati. Looks like a different approach to making immunotherapy work?
https://medicalxpress.com/news/2020-06-uncovers-clues-immunotherapy-breast-cancer.html
Pat. thanks for the link to the vaccine research. Another hopeful lead!
Lee64, I had developed a dental infection last fall. Becasue of the Xgeva, I needed to pause for a few weeks before the dentist was allowed to address. I lived on anti-biotics and painkillers until the root canal was permitted. Hopefully, your MO can giude you and your dentist will work with you!
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Hi, all! I am a newbie to Ibrance/Faslodex, started both this last week. I have a recurrence after 7 years since first diagnosis, no mets, fortunately.
I saw above that you should take the Ibrance with food for better work against the cancer? I have been taking it before bed with my other pills.
Also, without reading thru all 750 pages-- anyone feel like sharing some side effects of this combo? And how soon they started? Tips and tricks also welcome!!
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Hi Penny!
There are (almost) too many approaches to follow right now- what else can be added to immunotherapy to get it to work on ER-positive breast cancer? And will it be a single thing that works for all of us, or will we show different responses based on the state of our tumor microenvironment, or our gut microbiome, etc, etc?
I was reading today about Gilead, an interesting biotech in the bay area that has made headlines for Remdesevir, a drug that works (somewhat) against COVID. Turns out they are also moving rapidly into cancer immunotherapy. It's a natural pairing, because immune-boosting agents are helpful to fight viruses, as well as cancers. They recently bought Stanford's Forty Seven Inc, which is testing a monoclonal CD47 antibody against blood cancers, and in combination with Ketruda immunotherapy for solid tumors.
A few days ago they bought up half of another bay area company that is developing a couple of other drugs that were shown in preclinical work to remodel myeloid cells to enhance immunotherapy. Basically, these are monoclonal antibodies that inactivate the macrophages that protect the tumor from the immune system. Filing to start clinical trials next year. Because most of these kinds of trials are not focused on breast cancer they go beneath our radar, hard to get the information that would be most relevant to us. OTOH, MBC is such a large target for them, we will probably hear something about it if they find a drug that does the trick
https://www.gilead.com/news-and-press/press-room/press-releases/2020/6/gilead-sciences-secures-exclusive-option-to-acquire-pionyr-immunotherapeutics
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aviva5675, sorry you have had to join the club nobody really wants to be in, but welcome.
Have you got Ibrance capsules or tablets. If you have capsules you should be taking them with food, preferably a meal of 400 calories some of which are fat. Tablets are relatively new, only distributed this year and supposedly you can take them without food.
Drink lots of water or equivalent and keep good oral hygiene: cleaning teeth or use a mouth wash after meals, as mouth dryness/sores can be an issue. Fatigue can become a problem, if it is just try and be gentle on yourself. Side effects are different for everyone and are usually tolerable and much easier than IV chemo.
This thread has been immensely helpful to me and I hope it will be for you too, if something is worrying you, ask, someone will answer your question if they can.
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Cure-ious: Would Leronlimab work in a similar way to Remdesivir? It's being studied for both Covid-19 and different types of cancer.
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Cure-ious: I was also wondering what you think about taking Indol 3 cardinol while waiting for results of trials on SFX-01?
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