Ibrance (Palbociclib)
Comments
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Try a technique known as fogging When some asks a question that you don't want to answer, just say "I don't want to talk about cancer today". Keep repeating the same response, word for word to each question, so that the questions land in a fog bank where they don't get answered. A few rounds of this will give most people the hint that they need to change topics.
The comment I hate is" but you look so well", i.e. they were hoping that I would be skinny and bald and I'm not. When I was bald, only a very few people were allowed to see me without my wig. I am fine with health care professionals telling me that I look healthy, but casual acquaintances often seem disappointed that I do not look ill. I was very known in my local community so there was no keeping my diagnosis a secret. My "dear" SIL put it in her Christmas letter and told everyone she knew about the diagnosis! I was furious.
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I know how it is. They look at you, and talk like you should be at deaths door! I just love the," but you look so healthy", well guess what, I am healthy, other than cancer. I know they mean well, but really? I just tell people, there is so much more to me than cancer, can we please change the subject. I change the subject, ask questions, anything to get away from talking about that. Your Sil sounds well meaning, just tell her, in a very loving way, that you are so much more than cancer and you really want to focus on those things! You want to live your life like everyone else, you don't want to be, " the person with cancer". You are you. Good luck!
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I agree. I think sometimes some people ask because they are afraid they will be dxd with C and just want to know what to expect. I just gently tell everyone who asks that I am doing ok and thanks for asking. They I ask them something else. If they go back and say I look good, I again say thanks, that treatment has come a long way, and suggest something else. If they persist, then I persist that we discuss something else and if they want to take me out to lunch and discuss it at a later date, I would be happy to go! It usually works.
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Has anyone here exxperienced hair loss/thinning with Ibrance? I posted on an old thread about this topic but wondered if anyone here has experienced it? I am on cycle 13 of Ibrance and Fasoldex. I started to lose alot of hair on cylce 4 or 5 and then it really speeded up on cyle 10. I think it has stopped but waiting for more hair growth on top.
Any thoughts?
Thanks.
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Annmary, I have experienced similar hair thinning. It did seem to stop and grow back a little the last couple of months. I am at cycle 19 and seem to be stable with the hair thinning. I no longer feel I have to wear a wig although it has not come back as I would like.
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JoynerL, I agree with you. I did more research and decided not to order NAC. I am trying desperately to find something that will help my body to fight the cancer and survive from the SE of the medications.
Cisco, I told only a few people about the cancer and don't regret. My best friend is horyfid and can feel it in her voice. But she thinks she is obligated to ask me "How do you feel " and when I change the subject , she is relived. I am not going to tell nobody else. It is a lot easier to pretend you have your old life, when the people don't know.
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Joyner, With many friends in pharma and start-ups, I completely agree with your points. Yes, these companies can make plenty of cash, but they have plenty of disappointments as well and the research costs an absolute fortune. In the US we benefit greatly by having access to cutting-edge treatments through clinical trials for no (or minimal) cost to us but that would be prohibitively expensive if we had to pay, and indeed could be so expensive that it will never become a standard treatment available in your doctors office. If you work in pharma, you do not personally make big money if the drug turns out to be profitable, your salary is the same regardless, and although everyone I know prefers to have cash than not, not one of them are in this business to make money- everybody is working to try to use their science to change the world and they are working very very hard. Overall, there are many great people running the research and trials. Which is not to say the investors and finance guys are anything like that...
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Hey, hey! Some good news out of San Antonio breast cancer meeting today!!
The Abemaciclib-Keytruda trial, which we have already been discussing, reported very early results, at 4months- and they are seeing an overall response rate that is equivalent to what they saw previously after one year for Abemaciclib alone. Seems like Keytruda may be helping an earlier or stronger Abemaciclib response. Also, the cutoff for this data was last July, which means early in 2018 they will be announcing their one year trial results. Stay tuned...
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Ciaci, your delicate predicament really strikes home -- it describes virtually every in-law I have. I am not sure why my own parents and sisters are more delicate, but they are. I guess they instinctively realise their job is to keep my mind off it. Perhaps we ought to ask our Dear Husband to suggest to his family that they could help both of you by finding ways to keep your mind off it, and distracted. I know I am taking a small dose of paxil to help my mind lessen the intensity of these "I have cancer thoughts" - last night I found myself saying in a dream to someone -who asked me what I was doing there - "I am an opera singer and I am dying of cancer" - it woke me up because I was actually saying it out-loud to the room, well -- more like a whisper than out-loud, but then I had to correct this dreaming pronouncement ... LIVING WITH not dying of. It shows how much the underground thought continues despite everything. So I am sure our in-laws would be happy to know what we actually need from them. Shall we say something like this ? ..."I'm not dead yet, thankfully, I'm living with it, what I need from you is to distract me from thinking about this stupid disease, because I'd rather live while I'm alive instead of thinking about it all the time".
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Amarantha, yes, my Mom and sisters are so much better at this than my in-laws! They don't mention it unless I do (if I say I had lab work, they'll ask how the numbers were), and instead of that pitying look and asking "how do you feel?" they'll casually say "how's it going?", then I can answer about how busy I've been, or if I finished my Christmas shopping, or how the house build is coming along... or if I have a side effect or two.
The beginning of your last sentence reminded me of Monty Python's Holy Grail. I haven't seen it since I was in college, but I remember when they're supposed to bring out their dead, one "dead collector" has a guy slung over his shoulder, who's clearly alive, and he's trying to throw him on the pile. My sister-in-law is a huge fan, and I really should answer her with the guy's response: "Not quite dead yet!"
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Wallaby....about bone mets pain. I have similar bone mets to you - femur, hips, fibs, entire spine and skull, lots of. I have a particularly nasty, painful area in the thoracic spine where I have one of my several stress fractures. I fine oxycodone makes no difference at all to the pain. I might as well just drink the glass of water without the tablet! But Tramadol makes a big difference. It's said to be addictive but I haven't found that to be so. It doesn't make me drowsy and it means I can be active instead of needing to sit with my back against a heat pad to ease the pain when it's really bad. One thing I should add is that I don't take it after 2pm because it can keep you awake at night. It seems to have a slightly uplifting effect - for me, anyway. I hope this helps.
I've been offline for a few days so I'm way behind with the posts so I'll gradually catch up with all your news over the next two days.
Hugs to you all.
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Another note from the Abemaciclib-Keytruda trial- at this early stage the addition of Keytruda seems to be doubling the response rate to Abemaciclib alone; the study has not matured to where they have overall numbers for the combo, but if this ends up being the case that it doubles the effect, then it should go from 19% response to nearly 40%! And that is with no hormone therapy at all! It's also the first clue that I've seen that ER-positive MBC can respond to immunotherapy.
Here's the link: http://www.onclive.com/web-exclusives/abemaciclib-...
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Cure-ious-That is very exciting news! I wonder if they are doing a study with that combo and a hormonal or is there a reason to avoid the hormonal? Does that mean currently only about 20% of people respond to a CDK4/6 inhibitor even with the hormonal or only 20% of people responded to Abemaciblib without a hormonal.
Thanks for this link. Am really looking forward to the news about the ILC subtype- these studies haven't seemed to comment on type of cancer within the study. In the Paloma study ILC didn't have nearly as long of PFS.
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Leapfrog: Thanks so much for your input. I think when I get to my "new" (actually, my original) oncologist in January, I will ask her about switching. I am like you...I might as well leave the pill out of the equation and just drink the water! I may get maybe a scant hour of relief from the Oxy but not much more than that. Pretty much useless as pain meds go. When I came home from the hospital in April, 2016 with a pleurex tube in my side, it really did help the pain. Not sure why it's not effective now.
It sounds like you might be getting some of the serotonin bump that others report. Thanks again...Cindy
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NkB,
My sister just texted me with the same question, so how funny is that?!
Why wouldn't they do the 3-way combination of Faslodex-Abemaciclib-Keytruda? who knows! Maybe it is because they want to use Abemaciclib as a stand-alone treatment for cancers that have progressed and are no longer estrogen-dependent? But by then maybe Keytruda benefit would have worn off? Maybe they want to do two-way combination first, make sure it is safe, before they try a 3-way combination? That's frustrating, because each trial already takes so long! And of course we aren't allowed to mix-and-match our drugs! And yes it would be so helpful to see what the distribution of cancer subtypes they are testing- lobular? luminal B? PDL-1 positive? Anyway, I am thrilled it seems like it might be a good treatment and that we can expect to hear more about it in just a month or two...
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Cure-ious- that is funny. Yes, I’m very excited to see what comes of those studies. Maybe they want to use it in TN or at least ER- folks so want to prove that it works without hormonal. I’m still hoping for a good run with palbo/fulvestrant- scan tomorrow and MO Tuesday. It will be interesting to see what she says.
Are you accessing any info from medscape or med page? I’m going to see what UpToDate says in a few days also.
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Hi, everyone! Looks like we are going to do radiation after my good 3 month Pet. One Doc said I will have togo off Ibrance and the other said I will need to reduce the dose while doing radiation. Has anyone experienced this and what did you do
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NKB I also have ILC and am very interested in any research results on that subtype. It seems like ILC is only recently getting attention and focus to identify which treatments may be more and less effective.
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Hello there Tribe Ibrance. I don't post here much as Ibrance failed me in September. However, I learned something this week that might be of interest and so I am checking in. Many of you take loratadine (Claritin) daily to reduce side effects from Ibrance. I started taking loratadine daily in late October for allergies. I have been off all treatment since October, but I was having weird drug side effect type symptoms ... dizziness, headaches, dry mouth, constant thirst. My veins got so small, the best phlebotomists could not find them. I actually went and got a port last week because the most basic blood draw became a trauma.
Well, it turns out I don't metabolize loratadine so the stuff accumulates in my system to highly toxic and dangerous levels when taken daily. I haven't had such a severe reaction in the past, but I think with all the changes in my liver, I don't metabolize the stuff at all any more.
If you have been tested and you can't metabolize tamoxifen, you may have the same limitation I do. But you don't need a test to figure this out. Just look up the side effects of loratadine. If you are doing loratadine daily, watch for dry mouth and signs of dehydration. Unexplained dizziness and headaches are sign of dehydration. If you have this going on and you are taking loratadine, try stopping the loratadine and see if it goes away. For me it took a week to fully clear my system of the stuff. It's not a common thing to have disfunction on this particular metabolic pathway, but I know that many people here take loratadine daily. It's very dangerous when it reaches the levels of toxicity I experienced. It could potentially interfere with other treatments and make certain procedures dangerous.
Hope everyone is doing well...
>Z<
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my MO wanted me to start Ibrance while I was doing radiation to my spine, hips, femur and neck. I didn’t think that I could handle it all, so I waited until radiation finished and started a few days later. Now my MO thinks that all the radiation especially to my pelvis and femur is the reason why my neutrophils go so low. She says that my bone marrow can’t make enough neutrophils to recover quickly from the Ibrance. Neutrophils are made in bone marrow, especially big bones like the pelvis and femur. The concern will be that the combination of radiation and Ibrance will drive your neutrophils to dangerously low levels
Jo
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We have heard that probiotics might increase neutrophil counts, I haven't tested that yet, but it may be worth asking if you should also include a good probiotics and see if neutrophils hang in there?
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Cure-ious, what brand would you consider a "good" probiotic for our situation? There are so many at the drugstore that I left without buying one at all. Thanks for whatever input you may be able to provide-
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zarovka, I've been taking Claritin for 5 days during the cycle, to eliminate bone pain from the Xgeva shot. I get my shot on Day 15, so take the Claritin (Loratadine) on Days 13 through 17. I had asked my oncologist about taking it daily, as someone recommended that to me at the very beginning of all this, and she wouldn't hear of it. In fact, last time she mentioned knocking off the last day next month, so I'll be doing 4 days and seeing if it still works as effectively.
Every potential misstep avoided is a plus - Thanks for the info!
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Z - I don't have anything useful to add to anything but it's nice to hear from you and have you checking in sometimes. Hugs x
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Z, it's so nice to "hear" your voice!
Ciaci, I appreciate getting the input from your onc. I am one of those who has been taking the Claritin daily, but it worked fine when I took it during the 5 days surrounding my shots (2 before, day of, 2 after). I think that I'll go back to that routine.
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Hi Joyner- well GI docs always recommend Align, which you can get over the counter all over the place. I am trying a probiotic called PRO-15 from Hyperbiotics, with 15 strains, that I got on Amazon. I hope it works, I need to get neutrophils up- Rpoole has one that worked amazingly for her! Called PRO-10. Bifidobacterium bifidum and Bifobacterium lactis work on the immune system, but there are others too.
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Don't forget about the various mushroom extracts for improving blood counts. There are a few that are proven to boost the immune system and that are commonly used in Asian hospitals to improve blood counts for patients on chemo and improve quality of life. In vitro research shows some directly suppress cancer cells, but that's test tube research only so far. Each country seems to have its favorites, and some of those are prescription only, but extracts such as maitake-D and AHCC are available here and I believe they work, based on my wife's experience with them. Five years out from chemo she still had low counts, and was able to over double her neutrophils in less than month on a combo of maitake, chaga and six mushroom extract. I've seen no evidence they (maitake and ahcc) have negative interactions with chemotherapy drugs. High quality extracts are the best in my opinion, as there is poor bio availability from the whole mushrooms. We've switched back and forth between maitake D and AHCC and found they both work about as effectively, but prefer maitake D as it is cheaper, and more research supports that it has direct anti cancer effects.
If you want to try it, I would recommend maitake D extract 4x. It has the highest quality of research behind it. The optimal dosage is 5-6 mg/kg of bodyweight per day. This was based on a clinical trial by a North American hospital, using breast cancer patients and monitering various aspect of their immune system, and proven again with another North American trial of patients with immune suppression. Dosage is important, as too much will have a suppressive effect on the immune system.
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Z- nice to hear from you. I don't post often but I try to follow this thread fairly often. I always appreciated your input and I hope you are doing well.
My ND (oncology specialty) recommended Pro - 5 by klaire Labs as a probiotic. My neutrophils have been very good ( but I am on 75 mg of Ibrance).She also recommended high doses of a high quality Omega 3 for joint pain and depression. I have definitely noticed a difference in both with the omega 3. I take Omega MonoPure by xymogen. 1300 EC - 2 pills a day.
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Txgata, when I had rads in April, I was taken off Ibrance for the duration of the rads and then my blood was tested before I went back on it. Turned out, I had to wait a couple of weeks for neutrophils to get above 1. Also, watch out for colitis from the rads. Make sure that you ask your Ro for meds to treat the symptoms.
Z, al ways happy to see you here! I can't take antihistamines, but thanks for the warning!husband11, thanks for the mushroom info. I had purchased a probiotic online, Nucific BioX4, only to find out when I received it, that it had been tea extract. I am returning it and sticking with Align.
Hugs and prayers everyone,
Claudia
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Oops! Green tea extract!
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