Ibrance (Palbociclib)
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PNW...sorry you have to be here as well. You have gotten great replies so far. Try to remember through this that you are not alone in this often lonely illness. We are all here for you.
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PNW..... Welcome. I am sorry you meet the the requirements for membership. I don't post much but I'm always here in the background hoping, praying, and caring about people here. It gets easier. Everyone here is very supportive and willing to share experiences and ideas to help one another.
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PNW, I see the stalwarts have welcomed and hopefully reassured you a little. The advice they give is sound..Some of us have been very supported and helped each other here. Ask all the questions, think as positively as possible, learn to live in the present ( much easier said than done) and just Breathe for a minute when it all gets too much.
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hello
I am glad to see many of you are with ibrance and it is working for you. I am on ibrance for 6 months but tumors in different parts of my spine and spinal fluid are growing. CA marker has slightly elevated. I also take zometa every month. Does anybody here have the same experience?
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Hi Julia - my mets was just diagnosed in March. I'll be starting radiation to my spine and hip and after that will have rads to my femur. I'll also start 1x-monthly Zometa in mid-May. Once rads are complete I'll begin Ibrance. This is all new to me. I didn't have radiation the first time. I've been lurking here and the bone mets threads.
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Julia, first let me say that I am surrounded by Julias in my life so I'll add you to my Julia prayer list. My mother, Julia Godfrey watches over me from Heaven and I'll have her keep her eye on you too!
It may be that Ibrance isn't working as fast for you as it did for some of us but could soon start to work well. It's also possible you need a different drug to jumpstart the healing process. May I ask if you are taking one of the Aromatase Inhibitors or Faslodex along with the Ibrance? If not, I would certainly insist on that. You might also ask about trying XGeva instead of the Zometa.
Remember that there are lots of good treatment plans for MBC and we'll be pulling for you to find the perfect one!
Sunshine, we'll be pulling for you too as you start the Ibrance Dance!
Love from PatGMc
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PNW - I am sorry that you are here. I am on Cycle 8 Day 11 of Ibrance and seem to be having some success. Hope you have success as well. Tumor is shrinking!! Sept 2019 2.3 cm; Jan 2020 1.37 cm, April 2020 7 mm. Taking Arimidex. This is the 3rd time BC, twice left and now right. DR thinks each is a new cancer rather than recurrence, but admits there is no way of knowing. Blood counts low, and I definitely feel fatigue. Also fart more. Sometimes i get mouth sores, but salt water rinses seem to control them. I have hair thinning, but the DR says its probably the Arimidex. The Arimidex causes stiffness in the hands, and middle finger on left hand very prone to locking up. I can usually work through the fatigue. That said, the other day I decided to sleep in. Then I heard the dog start to barf. So I rushed him outside. By then, no longer felt like sleeping in.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
8/2019 CT, Breast/chest, neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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BlueGirl - Your tumor measurement metrics - is that for the new breast primary (recurrence)? And your only spread is to lymph nodes? Those results on the main tumor are great!
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I'd like to start a discussion about SERDs, which are oral estrogen degraders. To date, we have Faslodex in this category, and it works well, but some of the SERDs in the lab are much stronger and obviously preferable to take a pill. It has taken forever to get them through clinical trials, but now there are two that look good and set to enter into phase three testing (whenever that may open up given the COVID environment).
The link below summarizes these two promising SERDs: 1) Sanofi SAR43985 is expected to report results of phase two trials by the end of this year, and 2) Roche RG6171 is supposed to enter phase 3 (presumably whenever COVID restrictions end) and the company has so much confidence in this drug that they intend to make the trial for first-line MBC treatment, together with a CDK4,6 inhibitor
https://www.evaluate.com/vantage/articles/news/cor...
https://www.evaluate.com/vantage/articles/news/sni...
Has anyone taken or heard of these SERDs? Faslodex came out in 2002, its almost twenty years since its had an improved version. OTOH, we are lucky to have it, clearly its hard to make a better drug of this type...
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Hi all. So many of you kindly responded to my scanxiety that I thought I would share my results. My oncologist called me this morning with news that after four years on Ibrance/Letrozole I have progression in my liver (ten new spots) with additional uptake in my sternum, and spine. I expected the news simply because of the speed of the phone appointment. She is trying to get approval for a liver biopsy to determine if it is still all BC. Her thoughts are to switch to Xeloda if possible or move on to chemo if warranted. I know nothing else at this time. Today has been a struggle and I appreciate your suggestions and prayers. I am praying for peace and trust that God holds me in His hands and will be with me each step of the way.
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Praying for you IntoLight. I am sorry that your scans did not go as hoped. Hopefully, you will have a new defense that will knock back your cancer.
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IntoLight, as much as I dislike you getting this news I'm glad we know that even when our bodies change, our God does not. He never moves.
Until the biopsy shows something different I'm going to assume those new spots are something benign. I've known so many people (including me) who have had weird things show on a scan of the liver that turned out not to be cancer.
In case they are cancer Xeloda is a wonderful drug that can work for a long time. Remember that our goal is to keep things stable so we're ready for the wonderful new immunotherapies that are coming our way! Think of Judy Perkins who had all kinds of MBC tumors that are now completely gone and have been for years. Immunotherapy did that!
You may even revisit Ibrance after Xeloda does its work but count on something even better getting approved.
I'll be here praying for all good things and for incredible peace, my friend.
Love from PatGMc
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cure-ious, I am in the serd trial Sanofi sar439859. I am now week 3 into cycle 3 and my ct scan 3 weeks ago showed tumour shrinkage so so far so good
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Hellou, I am posting interesting paper about CDK 4-6 inhibitors.
I have tried to attach whole pdf file, but I cant. I have it, in case you are interested I can send it to you may by by internal post or an email.Send toNat Rev Immunol. 2020 Apr 28. doi: 10.1038/s41577-020-0300-y. [Epub ahead of print]
Immunomodulation by anticancer cell cycle inhibitors.
Petroni G1, Formenti SC1,2, Chen-Kiang S2,3, Galluzzi L4,5,6,7,8.
Author information
Abstract
Cell cycle proteins that are often dysregulated in malignant cells, such as cyclin-dependent kinase 4 (CDK4) and CDK6, have attracted considerable interest as potential targets for cancer therapy. In this context, multiple inhibitors of CDK4 and CDK6 have been developed, including three small molecules (palbociclib, abemaciclib and ribociclib) that are currently approved for the treatment of patients with breast cancer and are being extensively tested in individuals with other solid and haematological malignancies. Accumulating preclinical and clinical evidence indicates that the anticancer activity of CDK4/CDK6 inhibitors results not only from their ability to block the cell cycle in malignant cells but also from a range of immunostimulatory effects. In this Review, we discuss the ability of anticancer cell cycle inhibitors to modulate various immune functions in support of effective antitumour immunity.
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I received my Ibrance yesterday for my next cycle. I received the new tablets that can be taken with or without food.
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intoLight- Prayers to you right now. Keep us informed. Hugs.
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IntoLight— prayers for you. Sorry to read about progression. Hoping your next treatments gives you years of NED.
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IntoLight,
Thinking of you and hoping that you get on a drug regimen that works as well as this one has for you.
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Mis1, Thanks for popping up!
Is this the trial you are on:
https://clinicaltrials.gov/ct2/show/NCT04059484
That is a phase 2 trial of the Sanofi SERD as monotherapy? And you are responding well, even with liver mets?
I wonder how you came to take this trial-for sure it would be very attractive for those with ESR1 mutations, however I think those normally would appear after AI treatment as a mode of resistance?
Do the study docs characterize this drug as equivalent or better than Faslodex for those with wild-type ER1?
Are you allowed to add in a CDK4,6 inhibitor at some point?
Any notable side effects?
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I think my doctor actually said that "we take care of BC with pills now" and I misinterpreted as "cured". But, even at 80 years old, I can't imagine taking something as expensive as Ibrance for what's left of my life. Right now I have Pfizer"s promise to provide it for free through the end of 2020 but I can't see them providing it indefinitely. The "low side effects" sounds appealing but... right now I'm having to have chemo because my tumor markers nearly tripled from late November to late December and my insurance is covering it 100%. Of course, there are all the nasty side effects.
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I think my doctor actually said that "we take care of BC with pills now" and I misinterpreted as "cured". But, even at 80 years old, I can't imagine taking something as expensive as Ibrance for what's left of my life. Right now I have Pfizer"s promise to provide it for free through the end of 2020 but I can't see them providing it indefinitely. The "low side effects" sounds appealing but... right now I'm having to have chemo because my tumor markers nearly tripled from late November to late December and my insurance is covering it 100%. Of course, there are all the nasty side effects.
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IntoLight...I'm so sorry you didn't have better news. I'll be keeping you in my prayers. Listen to Pat...she gave you good advice. Keep hoping and don't forget that we are here for you.
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Penny, there are many ways of paying for Ibrance. I've been taking it for 4+ years and have never paid a cent. Cost should not be something you have to worry about. Your MO's office probably got you the info that Pfizer would assist you. They should do more if you need it.
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Hey, BlueGirl, when you said, "middle finger on left hand very prone to locking up," I thought, mine, too. But it is my right hand and it locks in a certain position pointed at certain people. Ever since my diagnosis.
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Penny, look up "Pfizer co-pay one savings card." They covered my co-pays for years. Google that or "Pfizer Oncology Together". If you can't find what you are looking for, pm me. Jaycee is also right that your oncology office should be able to help you.
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Intolight, I am sorry to hear of the news of progression. Xeloda has a really good chance of working, and if you keep the dose as low as possible that still works, you can minimize the side effects (for my wife, hand foot syndrome). The trick is finding the tolerable dose, as they typically start you out on a high dose. Hand and foot creams are vital to protecting your skin. Have a look at the xeloda thread. There is lots of good advice on it.
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Intolight, sorry to hear the news about your scans. I hope the next treatment works as long if not longer than I\L did for you.
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into light listen to Pats very upbeat prayerful optimistic take on things. Whatever it is you have been receiving good care and your scans are with regularity.
Sending you a big hug. And another one.
Tanya
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cure-ious,
I am taking palbociclib as well as the serd drug so it's not monotherapy and while I believe this is a phase 2 trial, it seems different from the one you posted.It's named SAR439859-TED14856
I have multiple Mets on my liver and signs of Mets starting in the bones. The largest liver met was 7.2 cm by 4.6 cm before starting and the scan done after the first 2 cycles showed the same tumour was now 6.0cm by 3.5cm so I would say the drugs are working so far
Side effects seem to be minimal, some joint pain but no where near as bad as when I was on letrozole and i managed to put up with that for 3 yrs
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Mis1, excellent and exciting- so happy that you also get a CDK4,6 inhibitor, it wasn't clear from these clinical trial write-ups. It is likely you will get continued better results with time, at least for several more scans, and because the CDK4,6 inhibition can boost immune system killing they sometimes see improved scans even a couple of years into the treatment!
And less arthritic pain than on letrozole?!- where do I sign up?!!
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