Ibrance (Palbociclib)
Comments
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My son quit that job. He said yesterday he felt so much better. You don't mess wit a bots mama! He had another job and seems so happy.
Off to the cancer center. Hopefully numbers are good enough for another round of chemo .
Hope everyone has a great day
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Good luck to you today, Dianarose! Glad your son quit the job.
Faith - I just took a 1 cycle break from Ibrance to go on a cruise with my 14-year-old-son. I felt so good and feel so much stronger than I did while on Ibrance, and yesterday when I did bloodwork the results showed blood counts are back at normal levels - and my tumour markers are almost normal. Dunno - quality of life vs. sticking with the protocol? I'll be my own guinea pig. Back on Ibrance tomorrow.....
Into - gorgeous kitchen - enjoy!!
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Dianarose, I hope today's treatment is going smoothly. I am happy that your DH quit his job. His previous boss has a lot to learn!
I have also taken some breaks from Ibrance. I can't say they were by choice, more for need such as surgery or low counts. I have had good results in spite of the breaks.
I was supposed to have a colonoscopy today, but Ibrance saved me from that, at least for now. My MO wanted me to have blood tests the day before the procedure, just as a precaution. Well, yesterday my WBC was 1.6, and my neutrophils were 0.6, so no colonoscopy. I suspect that I will need to take yet another extended break before I have the procedure. I will wait until sometime this fall. The best part of having it postponed was that I could eat yesterday. Unlike many of you who have no appetite, I am always hungry.
I am seeing an interesting trend in my blood work. My hemoglobin has suddenly started increasing. It was 7.1 when I was diagnosed 2 years ago. It slowly increased to the 9s where it remained until 2 months ago. It then started increasing.....10, 10.5, 11.....then yesterday it took a huge jump to 12! I have no idea why or what the significance is, but I find it intriguing. As a side note, my RBC is still low.
I continue to pray for all of us and for a cure. I hope we all become Julies until the cure is found.
Hugs from, Lynne
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Hi Lynne,
From everything I've read, I have serious doubts that we need to be taking as much Ibrance as we are. I think it's interesting that oncologists are playing with dosages, going to two weeks on/two weeks off, etc. I think the thing to remember is the Ibrance is that extra kick but it's the hormone therapy that is critical and continues to do its job. I had to take a month off of Ibrance between my third and fourth cycle as I was dealing with an infection in my chest cavity (likely related to my PleurX catheter and the effusion). It doesn't concern me that I had that break.
The issue with your hemoglobin is interesting to me. I am dealing with the opposite. Typically my hemoglobin was around 13.5 but once I started Ibrance my RBC and hemoglobin have continued a slow, steady decline. Even with a month off, my hemoglobin has been down to 8.1. Yesterday it was 8.2 even with that extended Ibrance break. Now that I've started round #4 it will be interesting to see what happens. I'm surprised that yours was so low... I understood that below 8.0 they often do a blood transfusion. Don't you feel it???
Hope everyone continues to do well on this drug.
Pat (2)
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Pat (2), When my hemoglobin was 7.1, I definitely felt it. I was exhausted, weak, short of breath, had no appetite. I also had severe pain all over and was diagnosed with polymyalgia rheumatica. I was sent to a hematologist for the anemia, and he said that he thought the anemia was from the PMR and would come up with the treatment (prednisone). It didn't increase during the first two weeks, and he scheduled a bone marrow biopsy. When I was diagnosed with MBC, the biopsy was cancelled. The rest is history. (Side note - my rheumatologist thinks that the PMR could have been paraneoplastic syndrome, an interesting phenomenon during which various symptoms occur as the body's immune system tries to fight cancer cells.) While I was on Arimidex, my hemoglobin increased a bit, but once on Ibrance it again decreased until 2 months ago. It will be interesting to see what happens next. I will ask my MO he thinks.
Lynn
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Hello, all...
I just started on the Ibrance - Letrozole - Zoladex course of treatment in April. My doctor didn't say anything about my hemoglobins until last month's visit, when he said they'd gone back up to 11. I was a trifle confused.
Other than a little anemia, slightly lowered white cell counts, neuropathy in my hands, thinning hair, and incredibly stiff joints in my legs, I've hardly had any side effects at all. :-/
Speaking of... does anyone else get hips, knees, and ankles that rebel at standing after you've sat for any length of time? I mean, once I'm up and going I'm okay, but I stand up like an old lady, and my knees sound like they're full of Rice Krispies when I go up or down a flight of stairs. If you do experience that, have you found anything that helps?
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Bring on the Checkpoint Inhibitors!!
http://www.dana-farber.org/Newsroom/News-Releases/...These articles get me all pumped up for our futures! Here's to getting completely well and remodeling our kitchens, my friends!
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Pat, how do you get to the group of articles you are referencing? I see the link to all of the different sub-topics, but did you mean a specific link, topic, or group of articles? Thank you!!
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IntoLight, Your kitchen is beautiful. That island will be so useful to you. I like white cabinets. They look so warm and inviting. Enjoy it.
Lynne
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50sgirl, thanks. I took a risk and ordered the island in green instead of white, and thank goodness I love it! I also wanted it built like furniture instead of a cabinet. That is what is not finished yet as it came damaged. They have to replace a panel. It keeps the kitchen from looking so white.
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IntoLight,The green island is a perfect fit with the white. It is such a pretty shade of green. What are the counters made of? They look really pretty.
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50sgirl, the counters are quartz. It is a bit more expensive, but doesn't stain or chip like granite. I need easy care and clean. I really like it. You can't see it well in the picture, but it has a soft vein running randomly through it sort of a grey/green.
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Hi ladies. I have been pulled off ibrance again so my mouth will heal. I have exposed bone on my jaw. I hope to only be off it for 6 to 8 weeks. Im still doing the faslodex. Hope that protects me. Healing hugs to all.
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They gave me chemo even though my platelets are only 50. Makes me a bit scared. They also gave me IV Atavan. Not sure why but don't want it again. Had double vision for st least 6-7 hours. I'm all set with that again. I have to go back to the cancer center Saturday for labs and hydration and if I need a transfusion they will send me over to the hospital. I hope I don't have to. It's my granddaughters 6th birthday and she's a Nana's girl.
Interesting, we found out our neighbors have bad bacteria in their well. We have had chronic diarrhea over a month now. We stopped and got the test kit and sent some samples out to be tested. Hubby isn't on chemo or Med's yet he has it too. Should know next week.
Hope everyone has a great night
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Hi, Amethyst. Former Ibrance + letrozole person here. Yes, the stiffness and achiness upon getting up from sitting or getting out of bed are very familiar. Just keep moving was what I found helpful.
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Oh my gosh, Dianarose. You don't need to be dealing with problems from bad water. You are drinking bottled water until the water test results come back, right? I do hope nothing interferes with your attending that birthday party.
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Sorry, I pasted the wrong link to this exciting article earlier:
http://www.dana-farber.org/Newsroom/News-Releases/...
Love to all of you from Pat (1)
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Holy cow, Pat, I loved that article and have a big grin on my face. I can't wait to show it to my DH.
Lynne
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It's a great article but the big question is when?? So many of us are on borrowed time. Wish these things moved along quicker
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Dianarose, I think pretty much everyone in this world is on borrowed time when you really think about it. I know what you've been through lately makes you feel especially vulnerable.
Let me tell you about a friend of mine. Her breast cancer had metastasized to her liver (14 tumors) and her entire spine while she was pregnant. She started chemo in her third trimester, had the baby and then used up her chemotherapy options. She was at our support center one day when we learned that Herceptin, after amazing results in trials, had been approved for compassionate use. She called her doctor, drove straight to his office and soon started the drug.
That baby girl began her second year at the University of Texas this week. My friend drove her to school! She's been in and out of treatment over these 20+ years, some years running multiple marathons. I say all this to tell you that there is hope for you, for me, for everyone here. Just like they found the "key" to Her2+ MBC, they have found one for us. Researchers continue to tweak my friend's therapies and they will continue to tweak ours. Things are happening at a fast pace now. We must keep the faith and remember that God has this. He has you, Dianarose, right there in the palm of his hand. Whatever happens, He has you.
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Oh, for craps' sake, Pat!! Its what we have been saying FOREVER- when are they going to try just throwing Keytruda on top of what we are taking?!! They test it alone, and, no big surprise, very little benefit- only now, what five years later, they say it works synergistically with Abemacyclib (like Ibrance)? How many years before they try to combine it with Ibrance AND Femara, and find that it works even better?!! And we could have been doing that all of these years!! And only now this observation appears in Nature? Has there even been a clinical trial started on this? I'm only being partly sarcastic, it is very encouraging to see that it does work.
Well, better late than never. If anybody ever responded even a little to Ibrance, you can throw an Abemacyclib and Keytruda combo onto your list for future regimens. They are seeing some effects of Abemacyclib on its own, unlike Ibrance, so it may be a stronger drug, and it seems to work by a different mechanism than Ibrance, so an Abemacyclib/Keytruda or other checkpoint inhibitor may work.
Well a good probiotic stimulates the immune cells traveling through the gut and acts like a low-dose of immunotherapy- so we can add that to Ibrance/Femara, while waiting for some immunotherapy. Main thing with immuno is that it also takes time to work, so we want to have some while we are stable, to make the responses more durable. Wish they would hurry up.
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My MO was talking about the other sister drug to Ibrance and probably won't prescribe it as it is very harsh on the heart. I did a research study for this drug. Although they would not tell me the name I figured it out quickly. It requires ekg's all the time. The MO said why would I put someone on it when it's almost the same as Ibrance but with very dangerous side effects. My Mo was hoping my cancer had changed to her+ so I could go on Hercepti n. But was still negative. I have read some ladies are NED after being on Herceptin. I don't think they have enough knowledge on tricky lobular. Sneaky little bastards!!!
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Dianarose-ugh bacteria in the well is the last thing you need. Hope that gets straightened out soon. Sending hugs for a treatment plan that gives you more QOL! Being with your grand daughter is probably the best medicine.
Melanie- Hope your mouth heals up after a short break from Ibrance.
Hi Shetland!
It seems that when we push our own doctorsfor new treatment options based on the research happening on these boards we may be helping speed up access. Pat's story is a great example. Makes me want to do more so friends here can find that perfect treatment and get their lives back.
PS - imho, lobular stinks. (Ok...it ALL stinks.)
Seems like I'm constantly reminding my doctors that symptoms are real although there are no glowing globs o film.It's all like spider webs so they thinkit's imaginary.
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Iwrite- if it's the well water at least we'd have an explanation to this chronic diarrhea . They could treat us and we would bleach the well. Years ago our son was the only one sick with constant diarrhea . Sure enough there was bacteria in the well and he was the only one affected . We don't drink the water but do make coffee and brush our teeth with it. It was tested two years ago and was fine but for 90.00 I would rather test it to make sure
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Hi all, I'm new to the boards. In May I got my MBC diagnosis, after 11 years from my initial BC. Shoot, I thought after 10 years I could cross that one off my worry list. I just finished my first cycle of Ibrance. The Femara was a breeze, and the Ibrance hasn't been terrible, but that 3rd week was a kicker. Looking forward to my week off. I'm sure it's been addressed before, but any tips on mouth sores would be welcome.
This is a wonderful community and I appreciate the circle of support.
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Jaylea, Welcome to the Ibrance Dance, my friend!
I'm one of the local cheerleaders for eating natural yogurt for those mouth sores. Stonyfield Greek Yogurt totally took care of them for me. The good news is that you may not have them at all after a few months. That was true for me.
We will be excited to hear that you have great results on our amazing little capsules! Sorry about the disappointment of a late recurrence. My first diagnosis was in 1994, then another primary in 2002. I first had mets in 2012, achieved NED and then found bone mets in September of 2016. It's a crazy adventure but we are Pioneers leading the way to making MBC just another chronic illness. I'm sorry you must do this but glad you found this amazing group of supportive folks! I'll be praying for you as I pray for all the rest.
How about we all pray for MBC researchers each time we take the Ibrance? I take mine at dinnertime so I'll be praying then!
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Cure-ious - Oh for crap sake indeed. The only really effective cancer treatments have been triplet therapies, but I doubt even 10% of trials are triplet therapies. I am looking at private immunotherapy options in Japan. If you show up at the Japanese clinics and you have declined conventional treatment, they insist you start at least low dose chemo before you start immunotherapy because .... they have found from 20 years of clinical experience that immunotherapy doesn't work on its own. Duh.
Our system of getting treatments into the clinic is broken and better late then never isn't going to work for many of us. I was on the phone a good part of the day trying to get access to a quantitative test of cfDNA, which is used widely and effectively to monitor treatment outside the US. I call our esteemed genetics testing labs here and they have heard of no such thing.... even though a huge conference on this topic just ended last week in Boston. Oh for craps sake. All we do is sit around and talk about this stuff.
That said, there is/was a trial at City of Hope that put women on keytruda and ibrance, and I heard indirectly that it did not do much. [Insert rant on reporting negative results here]. It's interesting that abemaciclib promoted an immune response in mice.
Glad you are knocking back those bifido bacterium. I do every day.
>Z<
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Z- which probiotic do you use? I know I need to include these, but haven't gotten organized enough to do any supplements on a regular basis, beyond calcium and Vit D. Probiotics next, then look around for some black market Keytruda...
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I look for a probiotic with more than 100 billion colonies that is kept in a cooler at my health store and I check the expiration date to make sure they recently arrived ... the critters decrease in number significantly with time However, the trial that showed PD-1 inhibitors were more effective with the right intestinal bug used bifido bacterium. I do try to buy probiotics that have some bifido bacterium.
Beyond that, I try to vary the probiotics I take in pill form because variety is a good thing with bugs.
I also make bulgarian yogurt which uses only bifido bacterium. That yogurt delivers a powerful punch of billions of lively milk drunk critters in each serving.
Z
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Pat(1), the article is wonderful and so encouraging! Thanks for posting, and I love the date of August 16th...such current thinking!
What exactly are these immunotherapy agents known as checkpoint inhibitors which he suggests may work with the Ibrance to further enhance treatment? Are those the agents yet to be developed and put into wide use? I'm assuming so. I feel so ignorant but encouraged at the same time!
Jaylea, welcome...we have your back.
Dianarose, I hope that you and your family are only drinking bottled water until you get this well issue sorted out.
Z, I haven't the foggiest what bifido bacterium are/is. Another thing I need to research and learn...and use?
Just started round 7...so far, so good. Scans on September 6th (second set).
Hugs to all.....
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