Ibrance (Palbociclib)
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Irv Weissman has a new paper out in Nature: https://newatlas.com/stanford-immunotherapy-cd24-c...
https://www.sciencedaily.com/releases/2019/07/1907...
In short, they identify CD24 as yet another cell surface protein that coats cancer cells to prevent macrophages and other immune cells from destroying them. This is the group that originally identified CD47 as doing the same- the current work came following the realization that antibodies to CD47 were not sufficient to get the immune system to attack several types of solid cancers. It turns out that some cancers rely more on CD24 than on CD47, and vice-versa. CD24 has also been seen by others to be associated with breast cancer resistance to therapy, and with 'poor prognosis' - it is high on triple-negative cancers, and so maybe finding will make another type of immunotherapy available to us. Reducing CD24 levels is one of the ways celecoxib (COX-2) inhibitors can make the cancer more sensitive to immune system, but of course a monoclonal anti-CD24 could do this much better..
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Ciaci, but (I might as well start with that), if you take a week off and it helps, don't you just have to go back on it? Is this just a fact-finding mission by the doctor? My former MO wanted me to go off Letrozole for a month (which dictated taking the month off Ibrance) so he could say, "I told you so." I was saying that my recurrent UTI's were caused by letrozole. After a month, UTI's stopped and so did foot pain. I went right back on them. I figured out that what he objected to was the word "caused." He did the typical, "there's no evidence of that." He knows I'm a statistician. He liked to rub it in. But what I was at that point was his patient.
I used to have some doctors like that but they are all retired now. My now retired gyn called me on SUNDAY to help me choose a surgeon for my mastectomy.
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Ciaci, was your most recent bottle of letrozole from a different manufacturer than you've used before? If so ask your doctor to prescribe only a previous version that didn't bother you so much. I blame most of my se on letrozole.
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Lauren, love those shoes. I looked and they don't have wide widths. My feel are permanently swollen now from whatever ... everything. I can only wear my old New Balance (old people shoes) tennis shoes. Darn. I loved the boots.
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I posted my long post before I had a chance to read recent posts and get caught up. Sorry.
Novagirl-- Good to hear from you!!!! Woohoo on the good scan. As far as my scans, no NED or NEAD. 'Stable' they say. Meaning no growth of liver lesion. I am currently on STD with work and applying for LTD after that (Sept 4). Then applying for SSD. Wish me luck.
Skyfly- Thanks for your advise/imput. I appreciate it. I could ask for a longer block of time for appt if I had progression, I guess. But my routine appts, no. I always have a list of questions for the MO and I guess I take up too much time in those "routine" appts. But something is always coming up. Not progression yet. But mini stroke end of May, then blood clotting thing now. I feel I have valid questions for MO, not just Hi and Bye visit. As far as 2nd opinion--- when first diagnosed (2yrs ago) I did the 2nd opinion thing. And when I have progression I will probably do the 2nd opinion thing again.
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Nicole, I don't think I drank that much water after the acupuncture session. I'm sure that would have helped. I also was constipated from the antidepressants the doc prescribed. I am feeling better now after I stopped taking them.
Candy,
Sorry to hear your MO is like that. 15-20 mins is not much time.
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Jaycee, my onc didn't say to go off the Ibrance, just the letrozole - though I could discontinue the letrozole next time I'm on my week off of Ibrance. And yeah, after a week, she said to note any differences and just continue with it, then report back.
Like I mentioned, I know one missed dose of a birth control pill can wreak havoc on the hormones, causing heavy periods and.or a pregnancy! So I'm afraid to mess with my hormones. I know, logically, that one week off will not cause all the fat cells and everything else to start mass-producing estrogen, but tell that to my sub-conscious! I have three more tablets in my current bottle - maybe I'll take the break before starting the next bottle...
MuddlingThrough, I will only take the accord brand of letrozole, which I've been on for most of the two years. The two times the pharmacy substituted it, I had all kinds of issues, so they know not to do that again!
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hi friends!
I’m sorry but I don’t remember who asked about the acupuncture and nausea but here are my thoughts:
1) I would absolutely call my acupuncturist and tell them I had a bad reaction after the treatment. If they are an ethical practitioner, they should absolutely offer you to come in and give you another treatment, and to especially address the nausea.
2) question: does this practitioner specialize in oncology? Not all acupuncturists are created equal and if they are not versed in treating oncology patients, then I would find a new acupuncturist. I had extensive training in treating people diagnosed with cancer and I would never go to someone who is not trained in this arena.
3) without knowing what else is going on for you, it is difficult for me to answer why you are feeling nauseated after a treatment. There could be a number of reasons possibly relating to or not relating to the treatment.
Hope this helps! Feel free to pm me with any questions! Hope you feel better soon love
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thanks to everyone who responded about the letrozole and foot pain. It makes me feel so much better to know I am not alone in having my MO not want to admit that the dang letrozole is the cause. I think it was Ciaci that wrote that her MO was willing to admit it. What’s the deal? So weird!! I even found research articles about it. It’s very clearly a thing.
I will check out the shoe recommendations. I treated myself to a pair of birkenstocks this summer and they have some nice arch support. I will also get a new pair of sneakers ASAP.
Pat I love you!!!! That pic of you with the candles on your head all lit up had me laughing and giggling!! That’s a classic!!! 😂❤️😂
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"You get foot pain!.....You get foot pain!.......Everybody gets foot pain!"
O. Winfrey
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Intolight, Asher is adorable! More hair than mine had when she was two! Lots of fun ahead for you guys, I'm sure.
Love from PatGMc
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Once researchers nail all the new drugs we've been reading about, we're probably going to have something like the AIDS cocktail to get us well and keep us that way! It's gonna' be fun, my friends! Like I said before, we'll be crawling in bed when we're 99 and dying from nothing! (I better start taking better care of my skin.)
http://med.stanford.edu/news/all-news/2019/07/new-...
Love from PatGMc (Thank you guys for the kind words. I am touched and I love you.)
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I will give my cancer cells to any macrophages that want them!!
Thanks Cure-ious and PatgMac for the links.
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Hi everyone. I am back since 2013. I am having pain in left hip, leg and ankle. CT was just ok but bone scan was positive and lit up at ankle and slightly at hip. Worried about bone mets. I never took the anastrozole and letrozole because of side effects. I am regretting it now. Anyone out there have a positive bone scan? Treatments? Survival rate per testimony? Alternative therapy?
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Oropallo When/what year did you become Stage IV???
I have 1 met in Left him and 1 in sacrum. My CT bone scan actually didn't find them...an MRI did.
I am on Ibrance/ Letrozol Lupron Faslodex and Xgeva.
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Morning all. I have had a chance to calm down some from yesterdays frustrating MO visit. I don't want to beat a dead horse, so to speak. But this thread does such a good job discussing new treatments in the works, the science of cancer and what is coming down the pike in the world of MBC. I have learned so much from here. I have printed out articles you all post so I can have it for the future. I am trying to keep up with the latest news in MBC research. So I have a basic question for the group.....
How do you all discuss with your MO's about all the research you are doing and treatment options you want to try???? Like I ranted yesterday, my MO has 10-15 minutes for our visits and she says she doesn't have time to discuss the options out there. I have not had progression yet. I am still on first line therapy. But I am concerned how she will be when I do progress and want to discuss options- clinical trials, Y90 procedures, etc.
What is your relationship like with your MO's?????
I want to be included in the discussion when I have progression and I want to try anything we can to help me. But will she be there for me or rush me out the door.
Thoughts.....
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pat I love that Oprah post!! You are soooo funny!!!! Yes! Footpain for all!! 😂
Candy - I think one of things I loved about my MO from day one, was that appointments never get rushed. It always has felt like he doesn’t have to run off anywhere and takes the time to speak with me about all my concerns and answer all my questions.
To be honest, sometimes I feel like I may be annoying him with all my questions but I have to remind myself that THIS IS WHY THEY GET PAID THE BIG BUCKS!! And that it is absolutely my right to get my questions answered.
You should not feel intimidated by your MO shutting you down about answering questions.
One thing you could ask them is this exact question: how can I have my questions answered satisfactorily? What would be the best route of asking and receiving answers? Should I email you? Should I bring all my questions in on paper and give them to you and then allow you to respond via email?
You are going to have to seriously advocate for yourself here.
And if they are not able to do this, then get a new MO.
I do believe that this issue is a fault not just of your MO but of the greater medical system. It is too bad that the hospital where you are being seen does not allow for longer time slots for the doctors to be with patients. It puts a lot of pressure on them. Some docs manage this time better than others do. I had a similar experience with a physiotherapist who I saw. She was 45 minutes late getting to see me and only had 5 minutes to offer me because she was so behind with her schedule. It was SUCH a turnoff. We only made it halfway down my body!! She said schedule another appointment so we could address the bottom half of you. I never went back. Too annoying for me.
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Philly--- Good idea about asking "How Can I Have My Questions Answered Satisfactorily." Maybe that would show the MO that I do want answers and puts the options in her court. She could call me later in the day, or email me, or use the patient portal messaging system. The only thing is she charges for the office visit time and probably cannot charge for the time used for messaging me. So in essence I am paying for 1 office visit but getting 2. Not kosher. She would not have time to do this with every one of her patients or her day would be twice as long. It sounds like you have a gem of an MO Philly. I know you have posted before about reporting your side effects to your MO. I envy you. You are lucky.
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i too have been rushed by my MO. But not in the beginning. He made sure I understood my options and answered questions etc. Now i am stable and he stated before if my numbers went up he would add ibrance back on. Progressions on scans may be biopsied so he doesn't know what I would need till then. Besides, it may be a while and who knows what drug or trial may be available then. I accept he doesnt have lots of time for me - now. I expect he will at time of progression. In between seeing him I see the PA and ask her some stuff.
Meanwhile I want to educate myself so I am prepared to ask questions at that time. Researching online answers many questions without bothering him.
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yes gailmary I feel the same way.
I get the impression that since I am stable, there are no “fires” to be put out and I am less of a concern right now for my MO. I am assuming that IF and WHEN the day arrives that I have progression, that he will offer me more time.
I did feel a little rushed on my Wednesday monthly appointment. But in my mind, I was able to reckon with it being that I believe that since I am okay right now, that there are probably others who are in deeper need of more of his attention at this time than I am.
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Here is a link to new exciting research regarding ear-tickling, which (as we all know) greatly improves the mood and directly counters aging:
https://www.sciencedaily.com/releases/2019/07/1907...
Anyone know where I can get one of these ear-stimulating devices (Amazon?!)
I need to add this to my Christmas wish list...
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Ha Ha Ha Cure-ious I love the meme!!!! That was great.
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Hi. Actually, I have scheduled a 2nd appt with my MO when all my questions were not answered. In the beginning of Stage IV dx, I had many questions. It has calmed down since then.
I realize that I have 15-20 minutes and I use them for important question(s) after we go over labs/scans/examination. I have a list and keep it short. Also, I call the RN if I have further questions and always get a call back. The RN will consult with my MO if needed.
Lately, we talk about clinical trials. My MO said she realistically does not have time to research trials..too busy seeing patients and too tired at night. She gave me permission to send to her private email any trials that might be of interest in my future (or others like me). There is not a big Clinical Trial dept at this facility.
S
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When I saw the specialist at UCSF at my progression for a second opinion, I also did a lot of research, which made me very able to have a high level discussion with her. She did tell me that she glazes over at a lot of the discussions about new trials because MOST of them never actually take place. you research them, think of a patient that could be good for it and it gets cancelled. Many studies on drugs don't work and end in the phase 1 of the trial. I do think that we should keep researching and pushing for things that we think might help us if we are in a position to not have other options. Being informed is vital to me.
I only see my oncologist once every 3 months or so, I could go more often, but, I am stable now. I get lab once per month (standing order) she emails me TM levels, will answer any email questions within a day. I can make a telephone appointment which is often longer. She has a group of pharmDs who I can contact re med or rx issues as well. I know that she will make time if I am in crisis- Unfortunately as we know- there is more and more cancer out there- the system is overburdened in many places.
Bring a box of chocolates occasionally- makes someone feel valued and it is a very rare event these days outside of Christmas time.
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Thanks for the posts Sandi and NKB. When I was first diagnosed with Stage 4 I was seeing a different MO. He was in the same practice as my current MO. He moved out of State and I then started with this MO. I LOVED HIM. And I know a lot of his patients loved him. His bedside manner was wonderful and he was very knowledgeable. I wish he could have stayed here and continued as my MO. I do bring a list with me, usually 1-4 items, of things I want/need to discuss. And I number them from most important to least in my mind so I can get the most important ones answered if we run out of time. Kind of crazy we have to do the legwork concerning the clinical trials. I know some here are knowledgeable to do that, but how about the patients that don't have those skills. I guess they don't get the same chances at survival. Nice. I did send the office a nice card once thanking them after they appealed the insurance company concerning a scan. I guess I need to get them chocolates next to apologize for being a bothersome patient. Sorry for the attitude. I understand what you are saying NKB about the chocolates. But good grief we have Stage 4 and are scared.
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candy- I feel your frustration.
I meant the chocolate for the MO. My MO once told me that patients complain to her about everything and everybody - many things she has no control over. It is exhausting. I try to emphasize the loving helpfulness of the people who care for me- because so many I have run into has been pretty wonderful. Lots of these people have hard situations too- we can impact their lives alsoand it’s win-win. I dont mean to sound preachy- i want you to find peace and be happy -
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Hi Moving, just noticed that you were on Ibrance and Fulvestrant. Have you been taking it since 2016?
Im taking both as well and just wondering how long it has remained helpful for others.
I’m in my 2nd round but have to say it’s been challenging .
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Nkb- You are not 'preachy'. A box of chocolates is a good idea. This too shall pass and I will find peace, I hope. Hugs.
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Candy - I hear you on the MO visits. I love my MO because he knows I want to be aggressive with my treatment and I appreciate that his recommendations reflect his understanding of my personal desires. But I have learned over time that he is most interested in keeping my cancer at bay, so side effect discussions are not what he really cares about. I use my family doctor and his nurse to help me solve those. As far as research, I try to stay focused on what's relevant right now, rather than posing 'what if' scenarios. So for example, in my most recent appt, I asked him his thoughts on changing treatments BEFORE I progress, a topic that's been discussed here. He said - “Maybe, but not yet." He said there is some merit to that logically but it is not yet studied enough to be real and even still he expects me to be on Ibrance a long time - at least 5 years (!) so he wouldn't change things at 19 months... maybe at year 3 or 4 so let's hold that thought.... anyway - my advice to you is to try to stick to questions that can be applied right now. The other thing I do is simply ask his opinion on current research topics, not necessarily related to me at the moment (since I am NEAD). So for example, in a visit earlier this year I asked him what his thoughts were on immunotherapy and if he thought it may sometime be a reality for hormone + women. He entertains these questions if I keep them short and focused and stay away from the 'what ifs.' Just my 2 cents!
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Jaycee - bummer about the width on those oofos boots. I was thinking of getting a pair of the boots for hockey season this year. My kid is a goalie so I often stand at the rink behind him during games (rather than sit in the stands) and those would do wonders for keeping my feet warm and super comfy. Maybe consider the flip flops, as those don’t reallyhave width requirements.
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