Ibrance (Palbociclib)
Comments
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nonahope, I am full of hope that your scans will give you good news. God has this, my friend!
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Nonahope, I can't get the results of my scans on my portal, but my MO always emails me with the results as soon as she gets them before the appt where we meet. Last time it was a Sunday night! I understand your anxiety. I am the sort that would want to know so I think I would open it, but I don't always understand everything I read yet so it is a mixed bag. Know that we are all pulling for you here, and want the best results, but we are very happy to help you if you need us. Other ladies here know more than I and will surely respond if you have more questions.
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Hope, only lab type stuff (blood work, biopsies) shows up on my patient portal. I always wait to see MO for scan results. Sometimes my onc nurse tells me when she sees me first for blood work but reminds me to act surprised for MO because she is not supposed to tell me. She says she just can't wait when the results are positive. Beautiful person. She gives me any shots to warm up myself so she can run around like a maniac being a nurse. I love her. Hope, I'm hoping for the best results you could get. I wish you didn't have to wait until Thurs. Seems like ages. Do you ever feel inclined to call them? I never do but you could. Maybe get the results sooner? Although at my hospital, it takes at least a week to get the scans read.
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Bighome, from what I've read, the cdk 4/6 inhibitors, of which kisquali / ribociclib is one of, they are most effective on hormone receptor positive subset of breast cancers, not triple negative. The research shows they don't slow the growth of triple negative cancer, but may play some role in inhibiting metastasis (further spread). See this article for details:
http://www.oncotherapynetwork.com/breast-cancer-ta...
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Read the article about new FDA drug approved for breast cancer. It also said there would be over 250,000 diagnosed this coming year with breast cancer. What can all of us do to stop this madness. If we already have cancer....they are working on it with new drugs, etc. but what about prevention for those 250,000. Just sounding off.0
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I wish they would find a cure or at least something to manage it more for many years . I'm afraid to do anything with my life now , like it's a waste of money. Well I guess we should feel bless that they're coming out with more options . It's a start.
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Kimchee, even small things are a blessing in this crazy world, and you are needed here more than ever. Find the small things to brighten someone's world. There is so much heartache that even a small smile at the pharmacist's is welcome to someone suffering. My dear departed mother-in-law was in a home with Alzheimer's, a seemingly useless life. Before she passed, one of the nurses told me one day she sat down beside my mother-in-law and held her hand. My m-i-l then looked into the nurse's eyes and told her she was praying for her and that God would help her in her time of troubles. The nurse then wept and told her something no one else knew. The nurse told me that this simple act helped heal her from something she was going through. She never told her something was wrong, but my m-i-l sensed it and in her broken mind, knew what to say. No life is a waste. God can use even an Alzheimer's patient or a hurting cancer patient for the good of others. Bloom where you are planted.
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Thank you so much IntoLight
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Intolight, what a beautiful story! I'm so thankful you shared it with us. Such a reassurance that God is still at work in this world and most especially among the sick.
You made me remember a sweet story from a woman I met many years ago. She had late stage lung cancer and had lead her life in such a way that she ended up sick and completely alone. She came to our support center a few times and then disappeared on us. Months later I got a call from her and she had been dumped from a hospital and told to call in hospice. Since she had no 24-hour care giver, home hospice would not accept her. I told her to come to the center and we would figure out something. A precious oncologist friend got her admitted to a different hospital. I went to see her, expecting to find her alone but there holding her hand was a woman she had recently met in line at a drug store pharmacy counter. They had exchanged phone numbers and that woman stayed with her until she died several days later. I will always believe she was truly an angel sent by God.
When I read the sweet words of encouragement you all write to each other, I feel God's presence here on this thread..... Angels among us.
Kimchee, here's a request from a friend. Pretend to put your cancer in a box you have laying around. Put the top on and leave it there. Go and spend a little money doing something special for yourself. Then please come back and tell us what you did so we can celebrate with you!
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Good morning...
Janet....I doubt my scans would be read before Monday or Tuesday, since I had them on a Friday -- I could call and get results, but I'm fine with waiting. When I was initially diagnosed with MBC, my oncologist called me at home that evening. So, I might even hear from him. I, too, get my Ibrance/Femara from a specialty pharmacist -- otherwise, I would never be able to afford this treatment. They have a person who takes care of getting the grants for you...what a blessing. She told me from the get-go not to worry, when one grant runs out she will find another. So far, I've had to do no searching on my own.
Kimchee...I kind of felt like you "wasting money" when I was first diagnosed...figured it was just a matter of time before I depart from this world. I've gotten much better in the past couple of months. This diagnosis is so new to me (only beginning round 4 of Ibrance/Letrozole)...but, I'm going to take PatG's excellent suggestion and put this cancer in a box!
What beautiful stories from IntoLight and PatG....oh, yes...I truly believe in those angels.
Wishing all a wonderful weekend!!
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Nonahope (Hope), who is the "person who takes care of getting the grants" for you? What sort of position? We pay the Medicare co-pay, but it's still costing $10K per year. I'd love to know if we were eligible for any help. Thanks!
It is gorgeous in VA...hope it is for everyone wherever you are. I love the fall!!
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She works for OHC (Oncology Hematology Care)....this must be her job (finding grants). My oncologist is an OHC doctor. Initially, when I told him there was no way I could afford this, he told me the prescriptions would be processed through the OHC pharmacy and "not to worry". She called me when my first round was ready to be shipped. I could have gone and picked it up myself, but it's about a 45 minute drive for me and she said that was not a problem, they would FedX the meds. At this point, I have only had to pay $3.30 each month - and I think that's for the Letrozole. I see the charges come through on my Medicare EOB and secondary insurance (Anthem) each month, so I suppose OHC pays them? All, I know is (so far) I have been totally blessed. Plus, they are really on top of things and call me the week I start the Letrozole to let me know they will be in touch with my oncologist to see if the dosage remains the same.
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Joyner, my first grant from the Pan foundation was taken care of by a person like Hope's at my MO's office. When that ran out, I had to find my own but I knew she would help if I needed any. The first grant foundation had no money at the time so I searched online for other sources. It was difficult and frustrating. The person at my MO's office told me to just contact Pfizer. If you can't find funding, they find it for you. They work through a specialty pharmacy (weird connections, I know) to find more funding. It was pretty easy. You do need to get them copies of most recent tax returns. The income required is amazingly lenient. Some ridiculous percent of the national poverty level way over 100%. If you are on Medicare, you most likely qualify. I never thought I would qualify but I do. And if Pfizer can't find you funding, they pay. Pfizer wants us to have this drug. THEY fund the foundations. They get huge tax breaks and don't get into a PR nightmare where cancer patients can't get a life-saving drug because of cost. I'll try to answer questions about this if you have any more. I've done it twice and am about to do it a third time. BTW, the Pan foundation is out of money for MBC right now. I may be able to redo my second foundation. They usually will fund you twice. My first grant from Pan was for $12,000. They only do $5000 now. My second grant from PAF was $5000. Doesn't last long, especially if it hits in January.
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Jaycee49, endless thanks for this. I'm still working reasonably full-time, though on Medicare, and I doubt that we'd qualify for assistance right now. However, once I'm fully retired, income will change dramatically, and this is likely to come into play. I'm preparing!
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Your income must fall below 500% of the poverty level. Unless you are loaded, you qualify.
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Is the Federal Poverty Level $16,020? Was just looking it up online.
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$16,020 was for 2 people in the household.
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The PAN foundation's income requirement is below 400-500% of poverty level. I think it depends on the disease being covered. The other foundations are about that, too.
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I deal directly with Pfizer, who sent me a letter for my medicare advantage plan insurer to let them know that Pfizer is not charging me so it won't be credited as a copay. They just send it a week before my off week. The first few doses got paid for by my insurance and a foundation making the copay that was credited to me.
I'm sure I'm not the lone wolf who could never afford to pay even the 33% copay for Ibrance which in the U.S. is $11,000 per month. It is good that there will be more choices but part of what you are paying is not for the drug itself but the money spent in the discovery and testing of it.
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Nonahope, I didn't read the results of the scans from my portal at first either. I was too nervous to be alone if the results were not what I wanted. I thought it would be better to be with the doctor so she could explain what the next course of action is and I also have a friend that comes with me as support to the appts. Wishing you great results.
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Hi all,
I am running around today but wanted to post a new clinical trial, not yet recruiting, that sounds promising. I thought now that Abemaciclib is FDA approved, it must be headed for clinical trials in combination with immunotherapy, and this trial looks like it might be doing that. Anybody with some time to research it? here is the link:
https://clinicaltrials.gov/ct2/show/NCT03280563?te...
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cive, I won't go on and on about this, though I could. The CEO of Pfizer makes over 23 million a year. That's a lot of research. Many other big pharma executives make as much or more. Their descendants will have more money than they know what to do with for generations to come. All on the backs of our misfortune. It makes me angry. But I am happy that we have this drug right now. Really, I am. $16,000 (actually it is a bit more than that) for two people? I'm counting my blessings.
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Cure-ious:
That trial looks very interesting. It tests various combinations of immunotherapy drugs on patients who have used cdk4/6 inhibitors, such as ibrance, etc. and who are no longer responding to it. It appears to be following up on the research that indicates cdk4/6 inhibitors may make breast cancer cells more visible to the immune system.
One of the drugs they are testing is atexolizumam, something that is currently fda approved for lung cancer. Read below about how it works. It would appear they are testing if it works better following ibrance or other cdk4/6 inhibitors (but not concurrent use).
Mechanism of action[edit]
Atezolizumab blocks the interaction of PD-L1 with programmed cell death protein 1 (PD-1) and CD80 receptors (B7-1Rs) . PD-L1 can be highly expressed on certain tumors, which is thought to lead to reduced activation of immune cells (cytotoxic T-cells in particular) that might otherwise recognize and attack the cancer. Inhibition of PD-L1 by atezolizumab can remove this inhibitor effect and thereby engender an anti-tumor response. It is one of several ways to block inhibitory signals related to T-cell activation, a more general strategy known as "immune checkpoint inhibition."[citation needed]
For some cancers (notably bladder) the probability of benefit is related to PD-L1 expression, but most cancers with PD-L1 expression still do not respond, and many (about 15%) without PD-L1 expression do respond.[citation needed]
Research[edit]
As of 2016, it is currently in clinical trials for colorectal cancer, melanoma, breast cancer, non-small-cell lung carcinoma, bladder cancer, renal cell carcinoma.[8][9]
Promising results have been observed for melanoma and non-small-cell lung cancer,[citation needed] and bladder cancer.[1]
A phase 1 trial reported a 19% objective response rate in metastatic triple-negative breast cancer.[10]
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Husband11 and Cure-ious, I am never certain what are appropriate [personal] questions and what aren't on this sort of site, so I'll just blunder straight along: are you all each scientists and/or perhaps doctors in your own rights? You each seem to have a level of understanding far exceeding that of many and certain of my own. I am enormously grateful to have you in our midst helping to sort through and explain. I'm just really curious!
And thanks.....!!
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Curious, that study looks interesting. Lots of options being used. If something fails, they move you on to something else. Unfortunately, I am excluded from both stages because this appears in the exclusion criteria:
- Autoimmune disease except for stable/controlled hypothyroidism, Type 1 diabetes mellitus, or certain dermatologic conditions
I haven't looked at a lot of trials. I wonder if that exclusion is common.
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I answered my own question. Not only will autoimmune diseases exclude you from a trial of immunotherapy, it will exclude you from immunotherapy treatments. Many diseases in seniors are considered autoimmune. This article has specifics.
http://www.medicaldaily.com/50-million-lung-cancer-patients-autoimmune-disease-immunotherapy-388717
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Cure-ious, Husband11,Jaycee49- very interesting study and follow up articles. Another exclusion besides the autoimmune disease history is the use of Fulvestrant for MBC. You also had to have a life expectancy of at least 3 years- hmm.
JoynerL- these are complicated topics even for scientists- I do think that the more articles you read the more repetition you will see and it starts to sound like a language you can understand. I do find it fascinating and I think that the more you understand about this the better you can participate in your own care. I googled a while back the mechanism of CDK4/6 inhibitors and the author had drawn pictures to show the cell cycle etc and that visual was really helpful. I can't find the article again right now- but, will look.
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My MS would exclude me from an immunotherapy trial but treatment is a doctor's decision. MO will be grilled on the 11th. There are no trials that include patients with autoimmune diseases (too small a population right now), but there are several case studies where the patients benefit from immunotherapy as far as their cancer and some even for their autoimmune disease. I need to stop compulsively googling now.
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Hi Joyner,
Nope, not a medical doctor, I'm a Professor (PhD) - mostly I run a research lab and travel a lot for meetings on the latest in my field etc, with some occasional university teaching. Part of our research includes studying molecular mechanisms by which cancers grow, and right now are even working on a patent application for a future cancer drug. So I can understand the drug targets and pathways in great detail and can search for stuff in the literature pretty fast (but as you say, the more of that you do, the faster and better you get at it ), but am a know-nothing when it comes to clinical trials, medical jargon, when to use chemo versus targeted drugs or what bloodwork numbers mean etc. I also can't read a CT/PET scan report. They all sound so dire, regardless of progression, that I leave it for my MO to just give me the bottom line, which is the main thing I look for from her. I'm too creeped out to even look at my own scans, let alone push anyone as to whether they've missed anything important. She also doesn't like to scan often, maintaining that this is all palliative anyway, whereas if it were up to me, scans would be done weekly. I'll be happy to get her advice when I need to move on, but expect to have to figure out the best path forward myself , knowing that she's not going to be reading up on the latest clinical trials, let alone the pre-clinical findings published in the latest Science/Nature, etc. I haven't even done any genomics testing on my tumor, because it will have mutated by the time its reappeared, and will have to be done again then.
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I'm so thankful for all the well educated ladies here. Reading every day helps me to be less anxious about progression. Scanxiety and I are still good friends but knowing I can spend as much time as I want asking questions here is comforting.
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