Ibrance (Palbociclib)
Comments
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Jaylea, my heart breaks for your 15 year old self and for your loss too, Gracie. I lost my mother when I was 32 and she was 56. I think we always feel like orphans when our mothers go, no matter how old we are. I have a friend whose mother recently died in her nineties and my friend is 68. She feels the same way we do. There was no treatment available for my mother's malignant melanoma and she only lived 2 months after her diagnosis. She taught me so much in life and at the end, she taught me how to die with dignity and humor. I hope I can do as much for my daughter.
Jaylea and Gracie, are either of you BRCA positive? I have BRCA1 as does my daughter who is 10 years out from her breast cancer diagnosis and treatment. We try not to worry about the possibility that my granddaughter (almost 14) will test positive but we do. I have two sisters who have had BC but they are negative for the gene. Both of them were diagnosed after menopause while my daughter and I were 44 and 34 respectively. I have always been thankful for my BC because it made my daughter check herself much younger than I did. She had bilateral mastectomies and a hysterectomy.
Aramantha, Hello! I'm praying for that Halavan to do its thing! We're excited about going to Toulouse with you. Make sure you're in the photo you send!
Candy, pain is probably not the best word for my rib thing....discomfort is a better one. It was quite generalized, not like I could push on one spot and feel it. I especially noticed it when I reached back to flush a toilet. I have a little something happening in my right arm now. The arm thing reminds me of the problem I had with my leg on Femara some years ago. I determined that it was an inflamed ligament though my oncologist look skeptical. I love him but he was also skeptical about the source of the pain on the bottom of my feet. I knew it was Femara and, sure enough, it and the leg pain were gone within 6 weeks after stopping the drug. I also think the problem I had with my hand back then was from Femara. I agreed to take Arimidex (another A.I.) this time and I take it with Turmeric (from MegaFood)....much better! Hoping this arm thing is just a passing "nothing" like my ribs were! I pray that your ribs are just making their presence known!
Gracie, remember that you can also insist on lowering your dose of Ibrance if your side effects are too bad. My oncologist doesn't even offer 125mg. He starts everyone at 100mg. If I do well in the switch to 75mg I bet he will start new people at that. He has a Quality of Life "fetish" and I'm thankful!
Have a great week everyone while these drugs work their magic! God bless all of you.
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THanks Pat! I’m older too and lost my mom in my 50’s. Still so hard!!!!
I tested negative for both BRCA 1 & 2, but have often wondered if they made a mistake, I have other relatives on my mom’s side who have had breast cancer and one of her sisters had what they thought was uterine cancer, but she was much older so they didn’t even test to see what type it was
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Gracie, I'm so sorry. I hope all our mothers are having fun in Heaven! Even though melanoma is on the BRCA1 list, I've recently learned that my BRCA1 situation may have come through my father. He had other families and I've just recently met one granddaughter online who tells me her mother's (his daughter's) family has a strong family history of BC. They have not tested for the gene, for some reason.
You might want to think about re-testing as I believe they've recently identified another gene mutation. I went to the FORCE Conference one year and they said researchers think there are at least 65 connected to breast cancer.
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I’ll ask about that Pat, thanks for the info
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Thereishope.....I'm a bit late on your post and I see our dear friend PatGMc has covered it beautifully as always! I'm on my twelfth cycle of Ibrance and I get the usual aches and joint pains which I think are mainly due to Femara/Letrozole. I also get new pains from time to time, mainly in the rib and sternum area but I choose to believe that with every tablet of Ibrance I take those nasty little cells are screaming for help and that's what's causing the shooting pains. They're terrified that Ibrance is going to take them down. This is a very slow treatment path for some of us, though. Not a lot of women respond immediately so hold your nerve and LOVE those little capsules and believe in them.
Amarantha....so pleased to see you popping in to see us still. I'm glad you're doing well with your new treatment.
Good to see you too nonahope. I should have remembered you'd changed treatments but ....you know how it is!
To the other 49ers, I'm one too. And end of 49er so I've just turned 68 and trying to get used to it. It must have been a great year!
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Just ran across this rather disturbing article about the potential sensitivity of palbociclib / ibrance and letrozole treatment and estrogen mimicking compounds in foods, such as soy and molds commonly found in grains:
http://www.telegraph.co.uk/science/2018/01/11/brea...
Sounds like its only at the petri dish level of research so far:
http://www.cell.com/action/showMethods?pii=S2451-9...
http://www.scripps.edu/news/press/2018/20170111siu...
two common dietary xenoestrogens: zearalenone and genistein dimish the effectiveness of palbociclib and letrozole.
Zearalenone is produced by fungi that colonize maize, barley, wheat and other grains. It has been linked to birth defects and abnormal sexual development in pigs and other livestock, and is suspected of having caused an outbreak of early breast development among girls in Puerto Rico in the 1970s. Genistein is produced in certain plants including soybeans and is often highly concentrated in phytoestrogen-rich food supplements.
Even using very low doses, similar to typical dietary exposures, the researchers found that both model xenoestrogens largely reversed the metabolomic impact of the cancer drug combination. "This included many key metabolites," says Siuzdak.
Under the influence of either xenoestrogen, the breast cancer cells also resumed proliferating at a rate comparable to that seen in the absence of drug treatment.
"It's intriguing that even a low, background-level exposure to these xenoestrogens was enough to impact the effect of the therapy to this degree," says Warth, who is now an assistant professor at the University of Vienna's Department of Food Chemistry & Toxicology.
The results indicate that these dietary xenoestrogens do have the potential to affect cancer therapy outcomes—and genistein and zearalenone are just two of the many xenoestrogens commonly found in the human diet. "There's a high likelihood that other xenoestrogens would counteract the therapy in a similar way," Siuzdak says.
Zearalenone in Foods:
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Sending hugs to Jayea and Gracie M. So sorry this terrible disease cut your mom and grandmother's lives short. Keep fighting. Have a good evening.
Tanya
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Husband 11: Thank you for sharing this information. It's interesting. My favorite food is bread, but I am going to limit it, not sure can I eliminate it completely.
Elen
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I read that one study of Canadian breakfast cereals showed that 20% were contaminated with mold. I think I would start out by avoiding products made from corn meal, as that has the highest rate of mold contamination. As well, whole soy products such as tofu, textured soy protein, etc. The bread part is scary. Not sure what the rate of contamination is in wheat based products. Maybe not enough to worry about it? As well, this is preclinical work, and it may or may not prove out in humans. But to be cautious, it would be best to avoid soy and corn based products (including corn based cooking oils).
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Husband11, soy I can easily avoid, and corn-based products also although I do like tortillas (think San Diego and Mexican food!) So this means we are better off gluten free? It is difficult enough to find enough to eat with no appetite and perpetual nausea. Toast and crackers are a staple for me although I am having great results with my current regimen. Arghhh!!!
I do appreciate all of your research and your help, so please don't stop. I do love research, and my PhD background is serving me well with the all of the information that is being thrown my way. You help keep us on solid ground!
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I wonder if a retrospective study of the diets of those having success with palbo / letrozole would shed any light on whether this is an actual concern?
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Airlinegal, hoping your rib soreness resolved itself over the weekend and that call to your MO was unnecessary.
Gracie, I hope the 125mg Ibrance treats you well. Many women tolerate it easily.
Pat, I tested for BCRA at my first dx 12 years ago and was convinced I was positive, since my mom was dx pre-menopause and I lost a brother to pancreatic cancer (which I believe is linked somehow.) But no, I'm negative. Yes, the silver lining for your dx is early detection and prophylactic measures for your daughter. I'm sure it was harder for you to see your daughter go through treatment than your own. Tanya, thanks, yes, all of us here are in the arena.
I read on another thread that Aurora is not doing well. Holding her and family in prayer.
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Today I had my first CT since starting Ibrance in October. 3 cycles under my belt with a month long break after cycle 1 due to severe neutropenia. Not sure if we can count first cycle cause of that. Hoping to see some indication that these drugs are doing what they're supposed to. With so many reporting that they did see improvement after 3 months I am hopeful. Results tomorrow. Scanxiety is still hard even afternoon 6 years. Nervous as heck!!
I seem to have come down with a cold all of a sudden. That time of year I suppose. Razor sore throat and head stuffiness. Hoping it doesn't delay cycle 4 tomorrow. Assuming I'm all good to continue on of course
Husband11: appreciate the info on xenoestrogens in bread! I try to limit but lately gotten lazy. Also trying to fatten up a bit from so much weight loss.
For those with rib pain: I too have sporadic rib pain and have not been told I have bone mets. Mine is on my left and has been bugging me since starting Ibrance and even before starting grastofil. It's near spleen area and then around the side and back. Theory is that when our counts go low our bone marrow is trying harder to produce again. That's just what I tell myself. Who knows
Hugs to those who have lost mums and family to this same disease. I hate it.
Much love all.
Ash
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There are huge leaps being taken when small petri dish studies are used to suggest dietary changes. I think that this dangerous. No physician would recommend treatment of a patient without knowing the patients history. The women in the clinical trials for palbo (ibrance) had normal diets and showed gains relative to tetrazole alone, suggesting that the drug effects are present with a normal diet. Breads and cereals in Canada are enriched with folate, a nutrient that women on palbo need to prevent anemia becoming so severe that they are taken off treatment. I would advise consulting with a dietician at a cancer centre before making diet changes.
Jo
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Husband, I’m celiac so I eat no wheat soy and only very small amounts of dairy (think a Tbs. of cream in my coffee). I haven’t eaten then in literally years. And yet I had progression.
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I take all such articles with a healthy dose of skepticism and I appreciate the comments just above. I was not going to bother commenting until I saw these then realized that it is important to live in moderation and if there were real concerns then we would know about it. I am not disparaging those who are concerned but I do think that we have to eat well, get lots of exercise and try to live as normally as possible. I do find it hard some days to get out and get that said exercise but it is because of the stupid fatigue~~those who still work full-time have my complete admiration. I am not young but still, was very active up until this recurrence and Ibrance.
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Thanks Jaylee...the rib incident did go away. Thanks you for asking.0
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- I decided to make contact with the researchers of the study posted by husband11 about dietary xenoestrogens and cancer therapy outcomes. Here is my email (at the bottom), the reply I got from my first contact (the guy quoted in the article, that's in the middle), and a reply from the first author who the other guy cc'd (at the top). I don't know what all the dots at the left are but I pasted the whole thing in from my email. That's why it is in backwards (chronologically) order. They really eased my concern about this dietary conundrum. I thought everyone should see it, too, if interested. (They gave me permission to quote their emails.)
- Dear Janet,
- Thanks for reaching out and expressing your concerns.
- As Gary mentioned we definitely did not intend to create any kind of concern/fear and the press partly exaggerated our results which are based on a cell model. Also, one of our major conclusions (that palbociclib together with letrozole is highly effective – good news!) was not mentioned very prominently.
- We do believe that more research in animals and humans is necessary before any definite conclusions can be drawn. Until then we would suggest to limit only excessive intake of xenoestrogens (e.g. certain food supplements unless prescribed by a physician) and maintain a healthy, well-balanced diet. Foods that may contain some estrogens should not be avoided in general but also not consumed daily in high quantities.
- Thank you again for contacting us, we really do appreciate your feedback which is very important for us!
- With best wishes from Vienna,
- Ben
- Benedikt Warth, PhD
- Assistant Professor
- Department of Food Chemistry and Toxicology
- University of Vienna
- Währingerstr. 38
- A-1090 Vienna, Austria
- Phone: +43-1-4277-70805
- http://exposomics.univie.ac.at
- From: Gary Siuzdak [mailto:siuzdak@scripps.edu]
- Sent: Tuesday, January 30, 2018 8:30 PM
- To: Janet Smith
- Cc: Warth Benedikt
- Subject: Re: dietary xenoestrogens and cancer therapy outcomes
- Dear Janet,
- The first author Ben Warth might be able to address your questions better than I so I've cc'd him here. Our intention wasn't to create concern, I think the primary take away is the potential for improving the outcome of the combination therapy by limiting your intake of xenoestrogens, as they might interfere. Clearly the clinical studies indicate that the combination therapy is effective and presumably the studies were performed on patients with many different diets.
- Best wishes,
- Gary
- The Scripps Research Institute
- La Jolla, California
- From: Janet Smith <jcsmith100dl@yahoo.com>
- Date: Tuesday, January 30, 2018 at 10:37 AM
- To: Gary Siuzdak <siuzdak@scripps.edu>
- Subject: dietary xenoestrogens and cancer therapy outcomes
- I frequent a breast cancer forum called BreastCancer.org. There have been several knowledgeable posters lately quoting your research about dietary xenoestrogens having an effect on cancer therapy outcomes, especially the Ibrance and Letrozole combination. That happens to be the drug therapy I am currently taking for my stage IV breast cancer. Some members have expressed some anxiety over their diets in regards to your research. I was wondering if you could say something to allay those fears. I mean, should we all make drastic dietary changes based on your research? I would think it would be too soon and the data too tentative right now. I could relay any comments you might have on this topic to my fellow members at BreastCancer.org. I appreciate your time and attention.
- Best regards,
- Janet C. Smith
- Las Cruces, NM
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Jaycee, thank you for doing this. I am never one to jump on an early bandwagon to take a supplement or change my diet. The purpose of my note was to express my thinking and spur on some conversation which it certainly did! Since I am having good results I have changed very little from when I first started my meds thinking my body has found its own rhythm pathway. But I like reading what everyone else is doing for when a change is needed in the future. Anything that improves our QOL is warranted and welcomed.
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Great work Janet. That's awesome that you contacted them, and that they responded.
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Hello to all, I am on the ibrance and letrozole combo and have been since January of 2015. I have been having terrible pain in both of my hips. I don't know if it is the lack of movement or if it is the meds. I recently had a bone scan and it was clean. I do have days where every muscle, joint and bone hurt but the pain in my hips never subsides. Has anyone else had this problem?
thank you
melissa
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Melissa, please consider seeing a physical therapist as you may have something I experienced. The pain in my hips and legs was almost completely cured with myofascial release therapy. I have mild discomfort remaining in one hip/upper leg which has been diagnosed as arthritis. I'm 68 years old so that isn't unexpected. I am prone to sit for long periods due to Ibrance fatigue and I do have soreness in my hips if I don't get up and move. I have Medicare and a Supplement and 100% was covered....first, an evaluation and then 13 sessions with the therapist. My oncologist gave the referral. I hope this is helpful.
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Janet....well done and thank you!!
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Melissa, I had pain in every joint and tendon and bone for months while I was on Afinitor, absolutely everything hurt, I felt like a cripple. Amazingly it went away on Ibrance, but it could have also been because I started regularly taking a dose of paxil (paroxatine) the theory being that a bit more serotonin helped feel less pain. (and more pleasure) Whatever it was, all that pain is entirely gone, despite having mets in my back.
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amarantha, I will tuck that advice about Paxil away for future use. Thanks!
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I saw my new MO today. She is very sweet, a word I would never use for the old one. It was strange, though, sitting there wondering what she had read about me in the old one's notes. It almost seemed like she was thinking, "oh, there's the crazy person I read about." Probably all in my imagination. She plays entirely by the book. She will do Pet/CT scans every three months so I will have one next week. With my old MO, scans came a widely varied intervals. She also did CA 27-29 which the old one hadn't done for months. Maybe his plan was to make everything seem not that important so a patient's anxiety would be diminished. I got to see my original oncology nurse who retired about a year ago (she is filling in part time) and that was great. My old MO walked by when I was sitting out in the hall waiting to check out and said a very friendly "hi." I said hi back and that was that. The situation is awkward but should get better. I'll be more prepared next time.
Husband, I was pretty surprised when the two researchers wrote back to me in such a short time. I would think they would be too busy with big important matters. Apparently not. One wrote back the same day and the other wrote back the next day. Who knew? I was very grateful that they took the time.
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Met with my MO today to talk about options to my regime to help me deal with the extreme fatigue I've been feeling. He said that if I got continue to handle the 125mg dose that this is what he would encourage. My endocrinologist made a change to my thyroid meds about a month ago and he wants me to address that first. I understand where he's coming from but I admit to being totally disappointed. I am so gosh darn tired ALL THE TIME. He said that they don't know that Ibrance causes fatigue for sure and it doesn't tank my counts - I felt like telling him that I can share about 100 women who would disagree with the likely does not cause fatigue statement. But, I will soldier on.
Has anyone tried accupuncture for energy? There's an East West Medical center associated with UCLA that has docs trained in both, they have access to your medical records,and have done some trials for BC. I'm going to seek this out. I'm back in the pool and walking. I need to get back on the excellent diet and quality sleep path. I have a prescription for Ritalin and I've taken it a few times - it definetly helps, but I hate the idea of taking it every day.
What else have people tried that truly helps?
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Very relieved to share that I received good news CT results yesterday!
After 3 cycles of Ibrance, 4 months on Letrozole and 10 radiation treatments to lymphnodes :
- mediastinal and hilar nodes have resolved (thank you radiation!)
- main lung nodule went from 18x18mm in September to 10x15mm now.
- several 4-5mm nodules in lungs are now 2-4mm.
- several 2-4mm nodules are gone / resolved.
- no other malignancies anywhere else
The word stable was used in the report. And I like that.
Hallelujah!
I've got a sh*tty cold and feel like crap but I don't care because things are improving! Started cycle 4 yesterday and feeling hopeful!
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For fatigue: acupuncture is awesome!
Hips pain: when I was on Letrozole in 2015-2016 before I was stage 4 I had bad hip pain. I think it's the lack of estrogen. It went away after I stopped Letrozole mid-2016.
Love reading when people have been on this treatment since 2015!
Hugs all.
Xo
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HOORAY, ASHLYN!!!!
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Congratulations, Ashlyn! I think someone is way under-reporting your results....that report is far beyond stable! If I were you I'd cross out stable on the report and write in "Remarkable Response"! Dr. Lawrence LeShan once told a group of us, "Your body believes every word that you say" and I think that's true.
Jensgotthis, I hate to call out your oncologist but I'll bet he doesn't have a single patient on 125mg Ibrance who doesn't have extreme fatigue. You might consider telling him you insist on lowering your dose to 100mg until the next scan, then if that looks good, switch to 75mg before the following one. Not trying to run your business but Quality of Life matters.
Sorry to be such a know-it-all today!
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