Ibrance (Palbociclib)
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Joyner, I'm pleased to see the growing research on Circulating Tumor Cells. Getting that test and having it show zero CTC made me confident enough to stop treatment for a couple of years. It was expensive but worth it. My insurance company denied it but I'm sure they'll be delighted now to do the test and save themselves the cost of drugs like Ibrance! It would be nice to be able to stop treatment again and just have the test to know when to resume it. It might mean people could use Ibrance for a much longer time. Just my thoughts.
PatG
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Ok, so maybe I need to reread this when I am not so tired. But Circulating Tumor Cells would be a blood test similar to the TM's we get already (CA 27-29 and CA 15.3 )? The way I understand the TM's - they are proteins released by the tumors , weather growing tumor or dying tumor cells. Would this show circulating tumor cells at any given time? PatgMc- sounds like you had this done? If insurance does not pay and it is expensive then the regular patient probably couldn't have this test done too many times financially. Wouldn't you have to have it done frequently -like TM's- to watch progression and to know when more aggressive treatment is warrented? Sorry if I am reading this wrong. Please correct me and I will reread tomorrow when I am less tired.
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Candy, I had a friend who was the pharmaceutical rep for the company who marketed the CTC test in 2012 and she told me about it. I had completed chemo for a single 1cm tumor/lymph node on my chest wall. I was NED after Taxol/Carboplatin and didn't want to just stay in treatment. My friend went home and got the kit and brought it right back to my clinic. The clinic didn't get a pre-approval from my insurance company so I got billed either $700 or $900 for it (can't remember which!). My clinic didn't press the issue and I didn't have to pay. If doing the test has or is about to be the norm, I'm sure they'll be happy to pay and I imagine the price would go down. I don't get tumor markers done because I don't have much faith in them but would be happy to do this one. I hope this didn't confuse you even more!
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Thanks IntoLight, I guess I’d describe it as feeling a bit worse than a pulled muscle. It increases sharply if I move certain ways. It increased when I was about to have a bowel movement. It’s less painful when I’m laying down in my back, more painful when I try to sleep on my front.
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November, I was diagnosed with Metastatic breast cancer, Cancer spread to my bones.
Oncologist prescribed Ibrance and Letrozole. Letrozole I get at my local pharmacy. The oncologist ordered the Ibrance for me. I get a call from them once a month about delivery. They also ask questions how I am doing and all. I have no clue, but I get it for free. My insurance is picking up the whole tab. I do have a co-pay for the letrozole. No complaints about this, for sure.
Before meds, breast surgeon said a mastectomy was out being the cancer has spread to surrounding area, lymph nodes and bones.
But after a second pet-ct scan 4 months later, the breast tumor shrunk due to the meds, both my breast surgeon and oncologist feel I should now have a mastectomy. Don't know if I should...
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Chrstene, the issue of whether or not to remove the primary tumor in a metastatic patient is still very much open for debate. Some animal studies suggest that removing the primary tumor could cause the mets to grow faster, while some other experiments suggest that the primary sends out immunosuppressing signals, and its removal would be beneficial. The human studies so far have also yielded mixed results - some studies did not show any survival advantage for removing the primary tumor, but some did. The criticism for the ones that did is that the majority of them were retrospective, so it's possible that the patients selected to have tumor removal surgery were the ones with a better prognostic (less tumor burden, fewer metastatic sites, better general health, etc) and that they would have survived longer with or without the surgery. There are now prospective, randomized clinical trials to answer this question, but I think the results are still a few years out.
It seems that quite a few doctors are open to the idea of removing the breast tumor for oligometastatic patients (these are usually patients with a single metastatic site, preferably those where the met can also be treated locally, with radiation, ablation or surgery). The thinking is that for these patients it might still be possible to try to go for a "cure" or at least a very durable remission by removing at least the "visible" sources of cancer cells. Once there are multiple mets that can't all be removed it seems that fewer doctors are suggesting surgery - the thinking in this case is that even with the breast tumor removed, the mets are still there and can keep sending out "seeds" for further metastasis, so there's no point in subjecting the patient to the stress of major surgery. There are doctors that would still do surgery and try to treat aggressively, but I get the impression that they are not the majority.
In your case, I am surprised that the proposed course of action proposed by the same doctors would have changed based on the shrinking of the breast tumor alone. You don't mention what happened to the mets (lymph nodes and bones). If those are still active, I'm not sure how a smaller breast tumor would make your surgeon and MO change their minds. On the other hand, if the mets are no longer seen on the scans and the only visible tumor is the one in your breast, that would be a significant change, one that could bring surgery back into the discussion. I'm not an expert in any way, and I can't say whether or not you should have surgery, but if the only visible cancer left is the breast tumor, you are in many ways similar to the "oligometastatic" patients and it would make sense that the doctors would consider the same treatments.
For what it's worth, when I asked my MO if he sees a scenario where I would ever be a candidate for surgery, he said that the surgeons would say "no", but he would be less categorical. And smirked.
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Chrstene, can you get a second opinion from another oncologist? I just read your post on the other topic, and wow, your situation sounds so much like mine (except I got my Ibrance from my second oncologist, not my first)! I don't know where you are, but if you have a cancer center nearby, I would look for someone who specializes in breast cancer. I can tell you that my oncologist is at Sloan-Kettering in NY/NJ and is extensively involved in research, and she was disappointed that I had had a lumpectomy before I had my consult with her - she wouldn't have ordered it. I also had a port inserted before the scans (why do oncologists automatically order a port?!), then had it removed when it was obvious I wasn't a candidate for chemo.
Are you getting anything for the bones? I had a monthly Xgeva shot for six months, until the scan showed that the tumor on my spine had shrunk so that it was "undetectable" and the lesions on my vertebrae had healed completely.
Wishing you a peaceful decision that you're confident about...
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PatgMc - thank you for the input on the blood marker tests! My Onc doesn't want to do a test until I've been on Ibrance for 6 months, so we shall see what happens!
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I really need to login and read all your great posts more often! Lots to catch up on.
Pat and IntoLight- I'm so sorry to hear about the loss of your friends.
Piggy- lots of good info here! Thanks for sharing!
Question for today --I'm finishing up my 3 cycle of Ibrance and I have now developed what seems like really dry eyes and nose. Nose feels dry, but runs a lot and eyes are watery and burn. I remember these side affects when on actual chemo years ago. Anyone else experience this? And any suggestions to help?
Hugs to all!
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MountainLady, four suggestions: drink, drink, drink, and drink!! More water than you ever thought you could, LOL. I manage almost a gallon a day. It helps that I actually enjoy a glass of ice water, but I'm never without my water bottle now. It keeps me moisturized from the inside out (I thought I was going to crawl out of my skin at one point), and helps flush the Ibrance out of the body quicker, once it does its job.
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Mountainlady - I experience the same issue with my eyes and my Ophthamologist told me to use lubricating eye drops because the watery eyes is showing that they are dry and my body is trying to compensate for it. At first I didn't believe him, but then I decided to give the eye drops a try and it worked! My doc. prescribed the brand "TheraTears". I hope this is helpful.
Ciaci - It is my understanding that drinking that much water a day can overload/overwork your kidneys. I have been told no more that 64 oz. a day. But you have to do what you feel comfortable with.
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Ciaci/JunieB: I also drink 100-150 oz. per day. I really have to drink this amount, because this prevents me from getting these UTI-like symptoms which are caused by the Ibrance attacking all my mucuous tissues including the urinary tract. I personally think that a somewhat increased water uptake is rather beneficial than harmful (but certainly I do not have kidney problems, which would be a different story). I also have very dark and smelly urine (sorry for being so direct), if I drink less. I told my MO about it, but he could not give me an answer on the cause, he just agreed with the increased liquid uptake.
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Pat... I’m so sorry for the loss of your dear friend, Cindy. There have been so many losses lately. I send you all my love.
As for the advice on washing our laundry separately I’ve certainly never been given that advice, nor any other such advice. I’m struggling just to keep to my normal hygiene rituals which, since I’m a bit OCD, were always fairly full on!! And as Pat says, we live in the Great Fatigue Land. I’ve been on Ibrance for 14 cycles and have never even heard such measures hinted at so Neogirl, don’t worry about Ibrance. Its reputation is worse than the real thing
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PS..... Anyone here know what happens if you get bone progression with bone only mets as far as treatment is concerned
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From what I can tell from other similar experiences shared, it depends on where the progression has extended to and what severity it bears. Seems like oncs tend to try more hormonal therapy (Aromasin/Exemestane or Faslodex) if the disease is still just in the bones, while if it's spread to lungs or liver, they might start considering chemo.
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Cure-ious had alerted us to the possibility of some exciting/ interesting news coming of of the ASCO conference today. I've been combing the internet all day and a few pieces are start to pop up. This one is the most interesting so far:
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Lots of news coming out of the Chicago conference.
One of these days they'll combine all these therapies into a big ole horse pill. Each of us will pay a million dollars for it and be cured. (Co-Pay Assistance, anyone?) Then we can wash our laundry all together again! Happy Days!
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Penny....great minds running together!
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Leapfrog I think it’s Falsodex now but I’m not positive. I’d had a false alarm last summer with indication of fast liver metastasis and was headed for a trial on Falsidex alone vs with Aceamelib (sorry about the spelling!). Not sure if it would have been the same for bone only
FYI I saw a post on another board several moths ago where a bone-only MBC sister was headed for her fifth line of treatment over seven years. Wish I’d saved it but I’ll say I was very encouraged that there were/are so many options
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Pat. 👍😊
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If you guys want to follow the news from the cancer conference:
www.asco.org
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Hi all,
Today I received a letter from CVS caremark informing me that my Dr's request for Ibrance was denied since I'm not "postmenopausal". The exact words were "Standard Ibrance Policy does not allow coverage of Ibrance when it is taken with an aromatase inhibitor for breast cancer if the patient is not postmenopausal". However, my doctor's plan was to force me into menopause by taking a monthly Zoladex shot. My first shot was this Tuesday. My first thought was, well maybe CVS caremark isn't aware that I'm taking a zoladex shot for ovarian suppression. But then I realized they had approved the zoladex the day before the ibrance denial, so maybe they did know about the zoladex and still denied me for Ibrance since I'm technically not of postmenopausal age. Is there anyone in my situation (who wasn't technically "postmenopausal" but was forced into menopause) and who has been approved for Ibrance? I won't be able to talk to my doctor about this until Monday. Would be nice to know if someone in my situation had the Ibrance/Femara combo approved by insurance, so I'm not thinking about it all weekend.
Thanks
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Adykort - Yes, it should get approved. I am getting the Zoladex shot for ovarian suppression which helped force me into menopause. There are others in the same situation. It took a few extra days before I was approved the first time. I understand feeling a bit anxious waiting for it to get approved! I would follow up Monday morning. Your doctor may need to word the request differently.
Hugs
~Kar
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Hi all! Thought I would jump in here with my experiences on taking Ibrance, Faslodex and Xgeva. I just finished my fourth cycle at 125 mg and my doctor is lowering the dosage to 100mg starting with this next cycle. I had been taking Arimidex the past 3 years but my bone mets started progressing quite a bit and by February of this year, we decided it was time to try something new. I now have mets in every single bone of my body! Amazing what our bodies are able to put up with, huh? I started the Faslodex 2 weeks before the Ibrance (waiting for insurance to approve it) and I felt fantastic; better than I had felt for a year. Then I started the Ibrance... First month was fairly easy, just a little stomach upset and I thought this would be a breeze. The second month I became so dehydrated it was scary. I couldn't think or make sense of things and my skin was extremely dry and my hair dry and brittle. During my doctor appointment, they put me on a saline IV, which helped a little. Third month the fatigue was unbelievable. By the end of the cycle, all I wanted to do was sleep and yet I just laid in bed wide awake most nights. I finally felt back to normal on the 7th day off, right when it was time to start it all over again---which I did but dreaded it. This past month I've had the dry skin, hair, eyes, nails, low electrolytes, some fatigue and more bone pain than usual. I was a little concerned so my doctor ordered a CT scan this past week. Results were better than in January--no sign of progression and no new spots so I decided to stay on it but try the lower dose. I was told to drink lots of liquid, especially electrolytes, but nothing else has been changed. Hope this helps some of you who might be new to this combination. Best wishes to everyone!
Mountainlady! I live just down the highway from you in Edgewood!
Janet
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NMJanet: Thanks for the post. I am on exactly the meds you talked about in your post. I just started my 2nd cycle of Ibrance last Wednesday. So far, I have had no noticeable side effects but have been vigilant about any changes. The only major difference I see is my oncologist started me on 100 mg dosage. I have seen lots of posts from others talking about taking the lower dosages. I don't know if that would make a great deal of difference. We did labs last Wednesday (completion of first cycle). My labs were pretty good - tumor marker down a bit and white cell count down but still within the normal range. I've been on Faslodex for two years and Xgeva for 5 years.
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leapfrog, I asked my team what follows letrozole and Ibrance and they said likely faslodex and one of the other cdk46 inhinitord
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HI Pat,
I wrote this up on another thread, but was shocked today when ASCO 2018 did the press release (you posted another one from Memorial Sloan Kettering) about the SANDPIPER trial on the PI3K inhibitor, taselisib. ASCO 2018 picked it as one of a handful of abstracts to highlight, as the phase 3 trial just completed. So because they embargo the abstract and highlight the results, you think its good news, right? Well the trial showed just a two month PFS extension for taselisib and Faslodex over what they get with Faslodex alone- that's awful, and especially when you consider a whole slew of Affinitor-like side effects come with taselisib.
And sure enough, Roche, who makes Taselisib, comes out today with its own press release, saying that based on this disappointing trial result, they will not be going to FDA for approval of the drug, so we won't ever be hearing about this again!!!
So I am profounding appalled at ASCO- who chooses these abstracts to highlights? What was the point of embargoing the abstract (ie it was not available to the public like the other ones are)? And why does Roche time the fact its dropping the drug to come out the same day- and a Saturday- is it to prevent the stock prices from crashing, or what?!!
It's like saying "granny chooses which stocks I buy"- oh, here's a phase 3 trial completed by Roche, that must be some exciting news for these metsters, I'll pick this one- all those ladies walking around wearing pink and demanding action will be so pleased to see an extra two months in their treatment regimens
Whoever picks the ASCO abstracts for a press release is absolutely incapable of reading a clinical trial result. For the biggest clinical trial organization on the planet, that is beyond pathetic...
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Cure-ious, I can't say I'm surprised that pharmaceutical companies play with the media to manipulate stock prices. Big business is a nasty game and I agree that it's horrible to play it when people with life-threatening illnesses are involved. I've watched from the sidelines as my friend whose 12 year old son has Duchene Muscular Dystrophy saw drug manufacturers and our government play games over a new drug.
I didn't save it but there's another article out there more than hinting that Taselisb could be the best of its type. I post articles I see on new drugs here because I think we all need to know there is research happening that could change this journey for the better. I'm glad you're out there paying attention to which articles really mean something, Cure-ious. Thanks for that!
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Hello Ladies,
I thought I just popped in to give you some news. Although I'm no longer on Ibrance, I like to read this thread from time to time and love the positive vibes you all share. At least now I know why Ibrance/Fulvestrant was not working : my cancer evolved to Triple Negative. I was almost selected for a clinical trial, but the last test showed my mets can't be measured according to the restricted RECIST 1.1 model. Bad luck ! The concerned trials did not allow the exception list of RECIST 1.1 ... which would have been OK for selection. So back to chemo ! Urgently they say. I should not wait for the sequencing tests which results will be available mid-june.
Cur-ious, PatG, reading your lines on the "money side" of trials and medicines, while I'm searching for press-articles about US healthcare for my niece's schoolwork is just what I needed
... I'll try to find something about it, just to make sure she won't only speak about "Obamacare".Thanks again for all support you gave me. This thread is fantastic.
I send you all lots of positive vibes and prayers.
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adykort- I get my ibrance from CVs Caremark and I was not menopausal I would just let them know that they are sending you through men
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