Ibrance (Palbociclib)
Comments
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Happy New Year, Shetland! CoQ is an antioxidant and part of the mitochondria energy-producing system- statins can make levels go low, and so my primary doc always recommends taking a supplement if you take a statin-
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Hi MJ, I love your sense of humor! Do you know what it is about Ribocyclib that your doc thinks may make it better than Ibrance? It has taken longer than Ibrance to get FDA approval, no? So I've been assuming that means not as good...
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Shetland, I don't know if a biopsy is on the horizon. In over six years, my onc has never wanted to dig samples out of my bones if we could possibly avoid it. When I recurred in 2010, we were actually glad to find a sprinkling of BC cells around my right ovary, so we were able to confirm whether the new mets were ILC or IDC-- as I had originally presented with both types way back in 2007.
(And yeah, when those ovaries left me and letrozole came on board, hello muffin-top. I feel your pain, sister.)
As for what is happening now, she did order a CTC last month. I haven't seen her since then to ask all my questions (see next paragraph), but surely the labs profile the circulating cells they capture? On that score, my CTC was the lowest it's ever been-- 2. So that's a happy discovery, at least.
Get this. I have new insurance yet again this year and I cannot see my oncologist until I jump through all their hoops. Had an appointment scheduled for today that I was forced to cancel. So I am now scrambling on the phone to find an in-network PCP who is willing to see me quickly so I can get the required referral to see the same oncologist I've been seeing for almost a decade. RIDICULOUS. DH tried to reason with them that I have stage IV cancer that is progressing and need to get my chemo ASAP... as in tomorrow... but no. Rules are rules.
SO... the doctor that BCBS assigned to me on my new insurance card? She refused to see me. She only sees patients in assisted living. What the actual heck.
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Cure-ious, I believe that Novartis just took longer to develop Ribociclib than Pfizer did Ibrance. No doubt they are wishing that they could have beat Pfizer to the finish line! My MO did not say why the Ribociclib may be more effective. I think it's early in the game. I think the trial was halted because the drug is promising enough. The results are not in regarding "progression free survival" times(with letrozole), because those participants are still progression free. Hugs MJH
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MJ, I am the one doing the Gedatolisib trial. Well I get the first treatment on Monday. I will keep you posted on how it goes. i received my first xgeva injection today. What things should I expect from it. I will start Femara and ibrance on Monday with the trial IV infusion. I will have several days I go in for blood draws for the first 2 months. The treatment is once a week for as long as it works or I need to stop it. I think they said I am only the 14th person in the U.S. to participate.
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I remember reading (somewhere??) that Ibrance is more effective with bone mets and Ribocyclib is more effective with liver mets and other non-bone mets. From what I gather it's best to hit cancer with a one-two punch as it doesn't seem to be able to react and find a way around the treatment.
Fingers crossed. After a year of Tamoxifen my wife has a couple small mets on her spine. They were too small to biopsy so we're waiting until mid February for a PET scan and biopsy as they might be big enough then. She needs to have a biopsy to determine her treatment because she had, at the same time: ER+PR+HER2- grade 1, 100% estrogen, ER+PR+HER2- grade 3, 30% estrogen and triple negative metaplastic BC.
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Welcome Mike. How did you figure out the heterogeneity of your wife's tumors? Also, be aware that there is a high error rate in determining hormone status from bone biopsies.
Circulating tumor cell tests also have issues; however, at least you don't have to do a bone biopsy. Biocept and friends are something to consider.
Apg - I don't know if you saw the earlier discussion of Bulparisib, a PI3K inhibitor. I was shocked to learn that the drug worked but the trial was stopped due to multiple (3?) suicide attempts by the trial participants. Gedatolisib is also a PI3K inhibitor. That doesn't necessarily mean it will cause depression and I would still take advantage of the trial; however, let the people close to you know about this (remotely) possible side effect. The issue didn't come up with Bulparisib until the drug went into phase III trials with a large group of women so even it it is a side effect of Gedatolisib it is unlikely to happen to you ...
Thank you for the periodic updates on your experience.
>Z<
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Thank you, Z. I will definitely let my husband know this. I did ask the trial coordinator if they have received any updates on others in the trial. They do not unless it is something negative. She said that since they had not heard anything she assumed it was going well for the others. I'm hoping so!
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Here are some links that talk about the differences in CDK4/6 inhibitors, as well as where they are re. release.
http://www.fiercepharma.com/marketing/mano-a-mano-...
https://www.novartis.com/news/media-releases/novar...
http://www.fiercepharma.com/marketing/pfizer-s-ibr...
https://www.karger.com/Article/FullText/447284
As I understand it, ribociclib differs from palbo in that it doesn't lower counts, so can be taken continuously, without breaks. Abemaciclib's unique feature is that it crosses the blood brain barrier.
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Apg - Phase I trials are often less than 30 people so if a side effect has a frequency of 3 people in 1,147 participants odds are it won't show up in Phase I.
Have you been tested for a PI3K mutation by any chance? May ask what test it was?
>Z<
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The New England Journal of Medicine has a recent report on Ribocyclib (Nov 2016): the protocol they used is 3 weeks on, one week off, and the dose is 600mg (yikes, poor liver!) and biggest SEs were leukopenia/neutropenia, etc., which doesn't sound better than Ibrance? Maybe SEs are similar but less prevalent?
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Lady Z.
"Welcome Mike. How did you figure out the heterogeneity of your wife's tumors? Also, be aware that there is a high error rate in determining hormone status from bone biopsies."
My wife had mastectomy and a large cancerous tumor was removed. The tumor was biopsied and found to be ER+PR+HER2- grade 1, 100% estrogen. Located in the center of it was the ER+PR+HER2- grade 3, 30% estrogen. Nine of 19 lymph nodes had the triple negative metaplastic. My wife's oncologists thinks the cancer in her spine is the slow growing 100% estrogen type. He's all for her getting the Ibrance + faslodex treatment.
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That's amazing, Mike. I presented with two types and was told that is very rare... but I've never heard of someone presenting with THREE. Sounds like something in her DNA went haywire at some point. Has she had Foundation One testing done?
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APG, I received my 8th Xgeva injection today. Am also on 8th cycle of Ibrance with letrozole. I have not experienced any intolerable side effects from this combination. Biggest thing for me has been fatigue, sending me to the couch for naps on some afternoons. Also am short of breath more quickly, but seem to recover easily. The Xgeva has been known to contribute to ONJ(osteonecrosis of the jaw) I think it mostly occurs when patients have dental surgery. My MO says he is reticent to prescribe it for patients with preexisting poor dentition. I'm thinking this is fairly rare, but that doesn't mean much if it happens to you. Also should take Vitamin D3 and calcium, as Xgeva will pull circulating calcium to help rebuild bone. I am wishing you every success with the trial.Keep us posted. We are all in your corner 100%.
lulubee , leave it to the bottom feeder insurance companies to screw things up better than anyone else ever could. I have done battle with them before, and I prevailed. It was not time sensitive, however. I would suggest getting on the phone with them and being calm but persistently repeating that you have a diagnosis of MBC and that you need the issue resolved immediately, ask for managers etc. What kind of inanity is this?
mike3121, sorry you have to wait for this critical information. I think there should be some kind of suspended animation drug for those waiting for critical medical info, so the stress and anxiety can be avoided
dlb823-thanks for the links for the CDK4/6 inhibitors
hugs, MJ
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Thanks Mike -
If you would add your wife's treatment and diagnostic history to your signature AND make it public, it will give us context to respond to your posts and we'll be a little more useful.
I think going on your oncologists hunch and starting treatment with faslodex and ibrance now makes sense. Google a bit and you will see that they have a hard time reliably biopsying bone. Your doctor's hunch may be just as good. And then there is the fact that aromatase inhibitors often work on TNBC ...
Bestbird's MBC Guide is really useful as she has done a deep dive into hormonal status and hormonal treatment. Very tricky.
>Z<
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Deanna, thank you for the links. That last link is to a 2016 article that has a good summary of palbociclib, ribociclib and abemaciclib, including three useful tables. One table compares side effects, and I see that palbociclib appears to cause more fatigue but less gastrointestinal trouble compared to ribociclib. Also it appears that abemaciclib is the one that is taken continuously, as well as the one that reaches the central nervous system. The two supplemental tables have a list of ongoing clinical trials.
Lulubee, the insurance hoops are worse than ridiculous. You are dealing with Vogons. (cf. The Hitchhiker's Guide to the Galaxy by Douglas Adams.) Did you try speaking with a case manager at your insurance company? A social worker/insurance person at your hospital? Having your onc contact a PCP for you?
Sending good wishes for your upcoming appointment, Apg!
MJ, your TMs dropped by almost half. That is excellent!
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Northtexas - Hair loss is big SE from Ibrance and 22% or so of us have it. I have been using a hair halo for nearly a year and no one at my office can tell - I use the fall - here is the link http://halocouture.com/the-fall/. Z and Cheryl - I head in to Hoag for my last 3 rounds of jaw rads today. I have a blistered tongue on the left side, so appetite is way off. I am ready for some IV Vitamin C when this is finished! Dreaming of ice cream too. I start round #14 of Ibrance + fas in two weeks.
(()) Claire
The most common side effects of Ibrance are:
- anemia (low red blood cell count)
- fatigue.
- nausea.
- neuropathy.
- mouth sores.
- hair thinning or loss.
- diarrhea.
- vomiting.
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Lalady - Yeah, the end is in sight. I am so happy for you on your rad treatments almost being over. Sorry to hear about the mouth blisters. Ice cream is good. I also highly recommend cold watermelon and cantaloupe. What about the numbness that you were experiencing? Has that gotten any better? Hope so.
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Lalady, I'm thinking about you. Hope the pain isn't too terrible. Your mouth will heal fast but in the meantime eat cool soft foods. It will be over soon!! ((Hugs))
Anita
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Clarie - sending you thoughts of healing and ice cream and anything cold for those tongue blisters. the smallest mouth blisters make me miserable. Your victory vitamin C IV is just around the corner. I wish you didn't have to go through this, but those jaw mets had to go.
>Z<
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My wife's scans (CT + MRI) are scheduled for today. She has no symptoms but TM is creeping up slowly for the last 3 months (stable up to Sep 151 -> then Oct 165 -> Nov 175 -> Dec 200). So we are bit worried. Please pray for her.
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letmywifelive - you and your wife are in my thoughts. whatever the outcome, there is a solution. scans are terrible mentally. hope you both can do something you enjoy today.
>Z<
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prayers for your wife. I agree they are terrible mentally. I had a bone scan done today and I haven't started treatment yet but I still worry about the results. I get freaked that in a month there has been lots of new bone mets!!!
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Thanks everyone for your prayers. Let's see what happens. Feeling little down today
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Letmywifelive
Feeling down is pretty sensible. The situation stinks. Praying for you and your wife. If the scans aren't what you want, the treatment options are there...
>Z<
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LMWL, I am thinking good thoughts for your wife's results. The waiting is so unfair. I just finished waiting from the 20th until yesterday for my results. I was told "don't worry about them, just enjoy the holidays" they just don't get it. I get it, absolutely normal to feel down. The highs and lows of this disease are awful. best wishes, dee
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Claire, I'm thinking of you! And I'm thinking of everyone waiting on test results.
I just had CT scans and it looks like I'm stable and therefore staying on the Ibrance train. Cysts on my kidneys were seen, which is a first for me. My dad has kidney cancer though so it's a red flag in my mind. Anyone else getting cysts on kidneys from Ibrance, Xgeva or Letrozole?
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Jennifer, I have had a few cysts in my kidney since my diagnosis. They seem to just come and go without causing any issues. I do see a urologist regularly for issues not related to the cysts or to cancer, and she has told me that it is not uncommon to have cysts appear sometimes. She has never been concerned since they aren't causing any problems. I have an appointment with her next week, and I will try to remember to get more info. I am glad you are stable. WOOHOO!
Hugs from, Lynne
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Jen, cyst showed up on my right kidney for the first time ever when I had my scan last month. My onc never mentioned it to me and it wasn't even mentioned in the impression part of the report. I happened to read it when I got the written report. Im on the exact same treatment as you, cycle 21. Wonder if it's a side effect that takes a while to show up. I couldn't believe it when I saw your post but relieved I'm not the only one.
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Congrats Jen! I hope you are stable for a very very long time
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