Ibrance (Palbociclib)
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Joyner:
Fludeoxyglucose (18F) (INN), or fludeoxyglucose F 18 (USAN and USP), also commonly called fluorodeoxyglucose and abbreviated [18F]FDG, 18F-FDG or FDG, is a radiopharmaceutical used in the medical imaging modality positron emission tomography (PET).
I have to go back and check but I'm pretty sure FDG is something my oncologist got excited to see drop dramatically. Of course, I could totally be wrong!!
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Micmel, I'm so sorry abut the scare with your son. Nothing about my own cancer journey has been as upsetting and alarming as my daughter's diagnosis nine years ago. Every day I pray that she remains cancer free and gets to raise her daughter (now 13). And we worry that this precious granddaughter will also find she has the BRCA1 gene we carry. I have to remind myself often that though they may have a predisposition to cancer, they also have a predisposition to finding joy when things aren't necessarily fun. And they have great faith in God's ability to carry us through storms.
Cathy, I am sad to hear your news but so very thankful you will be a pioneer in what I hope will be the next great thing. I pray that the growth in your liver is something benign though and that you jump right back into our little fatigued circle. I'm over here pulling for you.
lalady, I'll also be pulling for you and praying for good things. I wonder if there might come a day when people could return to Ibrance after a break. Has this been studied?
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Claire and Cathy, I am so sorry to hear about your progressions. I so want Ibrance to be the miracle for everyone. I wish it had worked for you longer.
Cive, I think you know my story but, in Canada, Ibrance is not funded. I was able to get 100% coverage through my work extended health. The cost, according to the receipt, it was $7,445 for 21 pills.
Please stay in touch. I'm hoping for great results for the next treatment regime!
Pat
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Cathy, I'm so sorry to hear you have had some progression and are moving on to the next thing. I'm in awe that you have decided to take part in a new trial and I thank you for being a pioneer. I'm not sure I'd have the same courage but I'd like to hope so. We really need people to participate in these trials or there would be no new drugs. I'll be praying that it's a success for you and for those of us who come after. I hope you will hang around here and let us know how you're doing. We all care.
Claire, I can't believe the same thing is happening to you too. I'm so sorry for your progression but I'm happy to hear you are still planning on your trips. I know how much you were looking forward to them. I've been thinking of you as I haven't seen you on this thread lately and was hoping all was well. That daily fireball pill sounds a little rough but hopefully it will do the job. I hope you will hang around also and give us updates, plus, I'm looking forward to seeing some pictures from your trips. They sound wonderful! You are a great example of how to live life to the fullest and just kick cancer to the curb. Enjoy that cute new kittie! I know how sad you were to lose the last one. You are in my prayers as is everyone here
Faith (in the future)
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Claire - That ball of brown fur with eyes does look like a little terror. Great distraction while you find out if afinitor is the one. If not, there are many others. Afinitor is tough for some, easy others. Let us know. Sending hugs and healing your way.
Cathy - I could write a tome on that trial, but, in a nutshell, it is a smart tactical move for you. I am VERY interested in how you do. It is now on the short list of my possible next moves. I would say that it is close enough to Ibrance and Faslodex that you can post your experience here, but if you start a new thread, let me know as I will follow it closely.
>Z<
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Z- Congrats on a clean scan, keep running and don't look back! Aren't you now past the average sell-by date for Ibrance? Working on an exceptional response, perhaps? It would be good if the first thing out of the gate was a strong hit, then you can come back to it, or derivates of it, for years later...
Cathy- I was wondering when somebody would step up to a SERD! These have been in development a long time, but it sounds like the drug is basically same as FASLODEX, right? I mean, both degrade the estrogen receptor. But obviously there must be stronger hope for the SERDS that support why they are under development, so I wonder if your MO mentioned what the hope is for these new drugs?Are they easier to take, stronger, used lower doses, longer lifetime in the body, what is it they are hoping to find? Please keep us updated, whatever you find...
And Claire, how ironic that you are going in the other direction, from Faslodex to Ibrance, and then combining it with affinitor! Like you, I scheduled a long trip to europe this summer, and intend to enjoy every bit of it However the trip is coming up fast and my last scan was in September, will just set the next one up on Monday, so if I'm progressing there will not be a lot of time to figure out what's next? Well for that reason, all of this discussion is super-helpful right now- thanks!
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Cure-ious - Thank you as always for your positive and thoughtful comments. I am at 16 months and the mean PFS on this protocol is 22 or 24 months. I have a bit to go pass the sell by date, but if I am really still improving at 16 months, that suggests this combo may work for a while. I am going to talk to the radiologist and find out if he really thinks a 2cm mass in my breast completely disappeared over the past 4 months.
>Z<
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Cure-ious - just a correction; I am moving to an mTOR inhibitor called Afinitor +letrozale (femara) and leaving Ibrance (CDK 4/6 Inhibitor) + faslodex (SERD) behind after 18 rounds. Z - I so wanted 22 mos.
Cathy - you are a brave warrior! Here is my poem to Cancer with apologies to Dr. Suess:I do not like you cancer spam, I do not like what now I am
I miss my hair and moving fast, its crazy cancer how you last
I do not like you in my chest, I wish you'd find another nest
I do not like you in my rib, I really hate you lest I fib
I do not like you in my back, I wish you death via chemo attack
I do not want you near my friends, and wish you now a speedy end.
(()) Claire
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Claire! Just when you got rid of all the cancer juice in your lungs. Hope the new protocol is just what lu(cky)lady ordered.
Pat (Sadie) Wow, see how much less expensive drugs are in Canada! Still not chump change.
Judi
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Claire, I love the poem, it should be printed, framed and hung on the wall!
I am 18mos into Letrozole and Ibrance. In Dec they found a small area of metabolic activity in my left hip. Let out ride for 3 mos and it grew, so I have been having radiation tip left hip for 2 weeks ( 1 more to go). The hope is the radiation will stop it a year and then we can try another approach. My mo said the FDA just approved another Ibrance like drug and he is thinking wee can tweak the different combos of the 4 main drugs to buy more time.
Cancer now in neck, spine, 2 ribs, both hips, both femurs. They say if you have to have it, that's the best places. I would prefer not to have it at all, as we all would.
Radiation fatigue bad this weekend. Yesterday on the couch all day. Today made a deal with myself to remain upright until at least noon.
Hugs to everyone out there!
C
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Cathy, I am sorry to hear about your progression. The clinical trial sounds like a good opportunity for you. As you said, you will have close monitoring and frequent testing, and that is a great advantage. Thank you for being so brave. I don't know if I would be as willing as you are to take chances for the greater good of everyone. I would like to think that I would be, but I am not so sure. Please continue to post here since we are all interested to hear about your experience and, frankly, you will always be one of us and we care about you.
Claire, I am also sorry to hear about your progression. With everything you have gone through lately, I had hoped that things would be stBle for you now. I hope your new treatment plan kicks cancer's butt. I hope you also keep us posted here.
Michel,, I am glad that your son is okay. I think that the family of anyone with MBC should have an invisible shield to protect them from any serious diseases. Unfortunate, cancer does not discriminate.
Diana, I am happy that the issue with your renal tubing was easily resolved, but geez, it is terrible to get a scare like that. I hope things settle down. I also hope that your daughter find a way to stay in her house. How long was the notice she was given? Just 30 days? Certainly not enough to find another suitable place. How long have your daughter and granddaughter been treated for Lyme disease? My son and granddaughter both had Lyme disease a few years ago although not at the same time. They did recover, but it is certainly not a pleasant disease. As you know, it is common in this part of the country, and the doctors here have it on their radar.
Lynne
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Lynne- my granddaughter is 3 1/2 and was born with Lyme disease. My daughter has had it for years but was continually misdiagnosed. They have been on treatment for about 10 months. Rents are hard to find in Southern California and very pricey. She was waiting to look at one in her current neighborhood but she said they want 2500.00 a month with nothing included. My granddaughter will be a senior in the fall and they want to try to keep the same school district.
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lalady~ I think that poem should be published and I feel the same way about cancer. I feel all those thingsyou mentioned! ~M~
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Claire, oops I got them mixed, you're moving from Faslodex (+Ibrance) to Femara (+Affinitor), whereas Cathy is going in the other direction, from Femara to a newer SERD Faslodex-replacement (+CDK4/6 inhibitor)! But each of you in on one of the newer directions for secondline treatment.
Cathy- I forgot to ask, with later stages of phase I trial, will have they already (mostly) worked out the dosage? And, I think in phase I you get to know what drugs you are getting? thanks
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Cure-ious - Thank you as always for your positive and thoughtful comments. I am at 16 months and the mean PFS on this protocol is 22 or 24 months. I have a bit to go pass the sell by date, but if I am really still improving at 16 months, that suggests this combo may work for a while. I am going to talk to the radiologist and find out if he really thinks a 2cm mass in my breast completely disappeared over the past 4 months.
>Z<
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I'm sad that some of you friends have progressed while on Ibrance but I'm full of hope for the other drugs on the horizon for you.
I know that deciding to have surgery or some form of interventional radiology is often not what medical oncologists recommend upon progression of BC mets but I've had friends choose this route with great success. It makes sense to me that a MedOnc would be focused on chemically treating the cancer but a surgeon or a radiologist might look at things a bit differently. A few years after I was treated with just chemo for a chest wall metastasis, a breast surgeon friend asked why I didn't have surgery, saying he would have felt very comfortable removing that 1 cm tumor.
A BC friend had to leave our city to find a surgeon who would remove 4 BC mets from her lungs but she did it and they have never recurred. Amazingly, she also had a piece of rib removed because of mets. (No more bone mets since then.) This superwoman also had brain mets which were demolished by Gamma Knife and have not recurred. Judy is a 20 year BC survivor and most of that time has been after her mets.
All this to say (and not trying to push anyone), wouldn't it make sense to look into zapping or removing tumors in organs (when possible) and then continuing with Ibrance for what remains? If this sounds ignorant, please tell me why because I'm thinking I would consider this if the system would allow it.
One more thing about longevity on Ibrance: There is every reason to believe many people here will blow out the averages for Ibrance response. I've seen it happen for people with various cancers. (Some were even on trial drugs that did not perform successfully enough to get FDA approval but the patients who responded kept getting them.)
I have one month before my next scan...7 months on Ibrance. I'm going to live this month expecting great results. I'm not going to let a scattering of bad cells deprive me of joy when I have so many cells that are well! So there, cancer!!
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Pat -
I'd appreciate it if you would post your comments on the Local Treatment of Residual Disease threads. Lots of pieces to this puzzle, but your point that MO's believe in systemic therapy vs local treatment due to their training is important.
>Z<
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Cure-ious, Animal Crackers - I've been trying to follow the string Cure-ious pulled in an earlier thread ... what is this mystery compound LSZ102 that Cathy will be getting and why do they think it will be better than the SERD we have. Deadly technical prose ahead ....
Here is the trial that Cathy has signed up for ...
Phase I/Ib Trial of LSZ102 Single Agent or LSZ102 + LEE011 or LSZ102 + BYL719 in ER+ Breast Cancers
The following is a taken from Novartis' summary of its drug pipeline ...
Compound Description LSZ102 is an orally bioavailable small molecule with selective estrogen receptor degrader (SERD) and selective estrogen receptor modulator (SERM) properties.
Area of ResearchER+ breast cancer
Preclinical DataIn vitro, LSZ102 demonstrated SERD properties through potent ER antagonism and degrader activity in an estrogen-sensitive, MCF7 ER+ breast cancer cell model. LSZ102 also inhibited insulin-driven MCF7 cell proliferation and dose-dependently inhibited the expression of ER target genes.[1] In vivo, LSZ102 showed activity against xenografts of an estrogen-sensitive, ER+ breast cancer cell line and of patient-derived tumor cells.[1]
Clinical StatusA Phase I/Ib, open label study of LSZ102 single agent and LSZ in combination with either LEE011 (LSZ102 + LEE011) or BYL719 (LSZ102 + BYL719) in patients with advanced or metastatic ER+ breast cancer who have progressed after endocrine therapy (NCT02734615[3]) is underway.
On the minus side, noone is thrilled about first in human trials. Many Phase I trials are not first in human but this one is. A sobering thought. I'd have lots of questions about safety.
On the plus side, it's a SERM as well as as a SERD (there is a Dr Seuss poem in there somewhere). It looks like this drug is a single agent with multiple targets, which would be an improvement over faslodex if its efficacy as a SERD is the same or better. Do we have any data about relative efficacy, at least in vitro? The references in the summary don't provide the data. This report promises more information, but it costs $50. I'd pay it if I knew I had time to read it. As a patient, I believe they should provide you with all the data they have supporting efficacy and safety.
>Z<
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Pat, your post about other surgical or radiological strategies makes so much logical sense, particularly how various doctor specialties tend to focus on their own areas of expertise. Great points to keep in mind going forward. Thanks-
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Pat~ I agree completely and have had similar approaches with my own treatment. My onc was saying no surgery. My gyno and liver surgeon were like OPERATE!!! Now! They went in and removed a ton of cancer, I was told it was very helpful, and now it sits in my bone only. I will always push for the aggressive surgeries and techniques or not so aggressive ablation or whatever we must fight for ourselves to give us more of fighting chance! I am scanning Friday so to me this week is a horrible one. And then I wait. Not liking how My scanxiety is rising PTSD here I come. 😩😖😰. I absolutely hate scanning. As I am sure you all understand all too well. Screw you cancer. Thanks for sharing some excellent information Pat! Keeping all close in prayer. Thinking of KD and Louis.! ~M
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Micmel- scanning on Fridays is the worst. I always have them scheduled for Mondays so the wait is shorter. Good luck and may you have great results
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Micmel - Hang in there. Go for a run. Have a great week. It's the best way to show the cancer beast whose in charge.
>Z<
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And we'll all be pulling for you and saying prayers on Friday!!
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As most of you predicted, the Ibrance problem is resolved. My MO gave me a sample bottle, so I only missed one day. Then I called the specialty rx and they found new funding for me. They said it would be a grant for 5 or $10,000. My co pay is $552 each month now but is expected to go down. Depending on the amounts, I should be good for the rest of the year.I'm really thankful for that. I guess how long I stay on it will be re evaluated in June after my PET scan.
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hi ladies, I'm just starting on ibrance and faslodex. It is has just been licensed for private patients in the last month here so I'm really happy I can take it. I'm a year stage 4. Mets to bone and fluid in my pluera. Failed on arimidex after 3 months and went onto Abraxane. Worked very well but failed on my next hormone. Bone mets er+. Am hoping this will work, it's great to read about how a lot of people are doing very well. My platelets were a little low but just okay to start. I'm 4 days in. So far so good. Generally I feel fit and healthy (except for all the cancer obviously) let's hope I have some luck with this one.
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Lillymillie (love your name!), we are going to expect great things for you! Ibrance has been an amazing drug for many people, some of whom were on the early trials and still doing well. I have widespread bone mets and had a remarkable response after 3 months. You might also ask your oncologist about taking the drug, XGeva, a monthly shot to pull calcium into your bones to prevent bone incidents (breaks).
Most docs prescribe the highest dose of Ibrance (125mg) and kind of insist on their patients staying at that dose even with unpleasant side effects and ever-falling blood counts. I asked my doctor again today why he never starts people at 125. He reminded me that quality of life is the most important thing to him for me and all his patients. He has found all of them to be very successful at the 100 mg dose. My counts remain stable, within the normal ranges or slightly under. Think about asking your doctor about this.
Be sure to get some natural yogurt to cure or prevent mouth sores. V and others here will tell you exercise is your best defense against fatigue.
Lilly, we will be your cheerleaders and pray that you are an Ibrance Dancer Extraordinaire (with a British accent)!
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Lilly~I will pray that the ibrance works for you and you get many years out of this medicine! I am set to scan this Friday and i am having some major PTSD! I am hoping for the best for you and this is a wonderful place to find support because everyone just plain understands! ~M~
Grannax~. So pleased it all worked out for you. That is more good news to add to the pile! Let's keep the streak going. I pray I can join the good news party!
Pat~ always so kind and welcoming. You're adorable! Another strong woman you are Keeping everyone in prayer!
~M~
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Welcome Lillymille. We don't fail, the drugs fail us. Hope this is the right match for your cancer.
>Z<
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Z~ Thanks for that information, we'll keep the SERMs/SERDs on the list! Hopefully that trial reports soon
I guess some people on this thread must have passed the 22-24 month mark with Ibrance?
It was approved in early 2015, so presumably some here must have gone on it right away? If so, it would be great for the rest of us to hear from you!!
Also, Z, when you say average PFS is 22-24 months, does that mean half of the patients go longer than that?
I'm three months away from the 2-year mark, with a scan coming up...
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Cure-ious, my oncologist attended a medical meeting in San Diego a few months ago where the doctor of one of the first women on the Ibrance trial spoke of her continuing success on our amazing drug. I forgot exactly when the trial started but I bet someone here knows. Anyway, well before 2015 when I. was approved.
Hooray for you and your success!!
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