Ibrance (Palbociclib)
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My Ibrance has to be signed for personally. If it were to get damaged or "lost", I'd be responsible for replacing the $11,400 bottle...
When I was on vacation in March, I tried to have it delivered to the UPS store nearby, but they refused responsibility, so I had it delivered to my son's work.
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Fed Ex has to call ahead to make sure someone over 18 is here to sign for it..Too dangerous a drug to be left anywhere.
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Chiming in on delivery of Ibrance--- I have mine delivered to my sisters house if I am not going to be home and then I pick it up from her. Fed Ex does not require a signature in my area. Strange how it differs from place to place. They just drop it off at the door.
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Mine has to be signed for by an adult. I suspect it's not the danger of the drug but the $11,000 plus cost associated.
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I halve to sign for mine too. They will not leave it otherwise
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My insurance won't mail it so I have to go pick it up. Fortunately for me it is only a 20 minute drive.
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Mine is delivered to my drug store where they know me and I pick it up. No signature and they are impressed with my coverage ($9.93 to pay on their price of $6,625. Cdn).
Cathy
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Fedex will leave it if I ask the pharmacy not to require signature. But I believe I would be responsible for the cost if something happened. I’m a bit of a risk taker.
Regarding the PR status, I flipped from triple positive to PR- (ER & her2 still positive) and I spent a lot of time at the beginning worrying about that, reading about it, asking my doctor questions about it.... My doctor told me to let it go... said we have no hard evidence that it makes any difference and for every study I produce that says it’s a ‘bad’ factor, he will produce 10 more that say it isn’t. So I decided to let it go. There isn’t anything I can do about it in any case!
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Mine is delivered by FedX and doesn't require a signature. The pharmacy calls to let me know what day it will be delivered.
Hope
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Cross posting here:
News from ASCO: a new potential best-in-class CDK4/6 inhibitor is being tested, called G1T38, with fulvestrant/Faslodex, which has continuous dosing- Loss of neutrophils plateaus out at 4-6 weeks.
In addition, there is a short-term IV CDK4/6 inhibitor in trials that was designed for use with chemo, called Trilaciclib.
It is meant to reduce myelosuppression (so you don't lose blood cells) and enhance immune system function during chemotherapy, you take it IV upfront of chemo- one clinical trial is ongoing for TNBC (with gem/carbo).
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I just had my first scan after my third cycle of ibrance and letrozole. Unfortunately it showed numerous new nodes now in both lungs and increase of previous 10 to 20 nodes in my left lung. Increase in the size of the hilar lymph nodes and a possible metastasis on The L4 vertebrae. I'm denovo stage 4 and my breast tumor has stayed stable and I've had some shrinkage of the underarm lymph nodes. So it's mixed news. I had a lung biopsy on largest node at 9 mm. There wasn't enough of a sample to get hormone status. My oncologist says that what's going on in my lungs is of some concern so he would like to have another lung biopsy done on on the 9 mm node which is now at one centimeter. Im very disappointed but I really would like to stay on the ibrance and letrozole combination. Has anyone had some progression on their first scan and stayed on ibrance?
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Lnf- I’m sorry to hear about your mixed news. I read here that Ibrance is a slow acting drug and may take more than 3 months to start to work. however if you hormone status is unknown, perhaps that’s why it’s not doing it’s job. Sounds like your MO is working to determine that so you guys can decide if it’s worth it to stay the course. Hoping for a solid plan forward for you. I’m sure others will provide more insight
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Lnf, I'll be praying that you find exactly the right combination of drugs to get rid of those tumors. My oncologist speaks to me often of how amazed he is at the number of new treatments coming along so fast. He is excited about Verzenio, among others and I wonder why that wouldn't be a good one for you to try. I look forward to hearing that things are better after your next scan.
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Hello all,
I had my PET SCAN on Thursday. The radiology report states that I have a new lesion on L1. The report says the lesion is lytic and sclerotic. It has also increased in size. I had a met on this bone at dx but it had healed. I don't see my mo until Tuesday. I was really hoping for more time on I/F. I am now obsessing with "what's next" . Not a great way to spend a weekend. I will post when i have more answers. Happy weekend to all.
Melissa
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Lnf, I'm so sorry to hear about your recent results. You're in a tough spot right now, not knowing what lies ahead, but doctors will figure it out and come up with a treatment plan. I've been reading your posts on the other boards, and it seems that there is some concern that the lung nodes may not be breast cancer mets but a lung primary. You mention that the sample taken at your first biopsy was not sufficient to determine ER status - was it enough to be sure it's breast cancer? Seems like the first order of business would be to figure out exactly what these lung nodules are and why they are not responding to treatment (ideally they would get a good biopsy that they could send to genetic testing, in case the nodules look ER positive but don't act ER positive).
The remainder of the scan looks like what you might expect from Ibrance/Letrozole - stable and slightly shrinking. The bone lesions are tricky, especially by PET, because sometimes they can look brighter as they are healing - your "new" L4 lesion could have been there from the start but was just not bright enough to pick up. If that had been the only issue, staying on Letrozole/Ibrance for another 3 months would probably make sense (of course, this is just an internet opinion from a stranger who is definitely NOT a doctor). It may still be a reasonable course of action if the biopsy confirms that the lung nodules are ER positive and don't harbor some mutations that suggest resistance to AI's. If they are something else, then the treatment plan needs to address that (chemo if they are ER negative, maybe switching to faslodex/ibrance if they have a mutation that renders them resistant to AI's, and lung cancer chemo if God forbid they are lung cancer).
It will be a long few weeks to find out - do whatever you need to get your mind off it - I binge watched the Crown and the Marvelous Mrs. Maisel and pigged out on sushi and chocolate while waiting for my final diagnosis. I left work the evening I got my first positive biopsy results and didn't come back until I had the final results of my staging PET/CT that confirmed stage IV. Somehow knowing, even though it wasn't good news, was mentally easier than not knowing. Be kind to yourself and know that no matter what, there are options - you just don't know yet what the right option is for you, but it will come.
((Hugs))
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Melissa, sorry to hear about the new met - the silver lining (although I know it can't feel much like any silver lining) is that you're still "bone only" and you don't mention that the new lesion is causing any symptoms. If this is the only thing that shows up on the PET/CT, would your doctor consider local treatment like radiation to kill this one stubborn met and allow you to stay on letrozole/Ibrance?
Hugs and hope you can do something nice this weekend that takes your mind off the scan results.
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Piggy99, thank you for you opinions. That does help. From what I can remember from the visit with the oncologist after my lung biopsy, it seems like he said there was such a small sample that they weren't even positive that it was breast cancer. I am a little disappointed that the original radiologist is refusing to do another biopsy on me because of the collapsed lung. So I'm getting a referral to a different position for a different type of a biopsy. So I imagine it'll be a few weeks of waiting for results on that.
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Lnf-
Do you know what they used to do your lung biopsy? My first pulmonologist stated it would be "dicy" to try and get a biopsy ( right hilar node). I went for a 2nd opinion( in fact first pulmonologist recommended him) who was trained to do a interventional 3D ultrasound in order to get some tissue for the biopsy. From my understanding there were only two hospitals in Connecticut that had a trained physician to do this procedure. The Dr. was able to get enough tissue to confirm breast cancer and hormone status. I just wanted you to have this information to discuss further with your Dr as this maybe helpful.
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lnf- so sorry about your lungs. Did the nodules glow on the pet scan?when I was diagnosed I had several nodules but they didn't all light up. I read that some people have nodules in their lungs that are not cancerous. Just a thought. I had a ct scan Wednesday and the results have not been posted. I have a mo appointment on Wednesday. I hope they post before then. I'd like to have an idea of what is going to be said. We will all be with you when you have your biops
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singlemom1, my first lung biopsy on the 9 mm node was done with them punching into my side because the node is on the outside edge as a lung. I don't know the proper way to describe it but that's what it felt and look like was them punching into my side. This caused a small collapse then a overnight stay at the hospital. I have read that there's a way to do the biopsy where they use a scope and go down with a camera. That seems a little less invasive than some of the other methods and hopefully that's what they will do.
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holmes13, I had a CT scan and I've never heard anything about things lighting up with that type of scan. I've heard others refer to things lighting up on scans and I'm not sure what that means. Originally I had 10 to 20 nodes in the left lung and this latest report just states that there's numerous new nodes and increased size on previous nodes. And then the hilar lymph nodes had increased in size. Good luck on your scan results.
And thank you everyone on this thread for all your thoughts, concern and suggestions. They are much appreciated.
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Lnf, when I speak of something "lighting up", I'm talking about my PET/CT scan's FDG uptake which shows the cancer's cellular metabolism. I'll attach Oncolink's explanation. I hope this helps.
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lnf- it sounds like you have the Same thing that I have. It's a pleural effusion. Have you ever had to have it drained? It sounds like they need to do a pet scan and make sure that it is cancerous. They probably could have drained some fluid from that area and tested that. They would drain from your back side. I would definitely talk to your doctor about a pet scan
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When I got my Ibrance I had the option of signing for it, or just leaving it on my doorstep. I chose to sign for it because it's so expensive. It's interesting how these things work in different parts of the world.
Lnf and lissalou I have my fingers crossed for you both!
I have an appointment Monday. My printout says "INF lab". I don't know what they're going to do. I will have been on Ibrance + Femara for about a week. I think it's either an injection of Denosumab or some kind of infusion or blood work, or a combination of all these. I'm not looking forward to whatever it is but knowing would ease my anxiety a bit. What would they want to do after I've been taking these drugs for just a week?
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Sparrow, they should tell you..grrr... I get an infusion every 3 months of Zometa for my bone mets since I am Stage IV. It is just an IV in my hand and lasts about 30 minutes for the infusion and additional time to prepare the drug. It is relatively painless. Some of the ladies here get different types of medicine for the same thing. I am not the most informed on the other treatments so I will let others share, but it is usually no big deal. The fear of not knowing is probably worse than the treatment. You should definitely ask. Is there any type of portal online you can access that will mention the other drug? Since you are only Stage I it should not be bad. One of the things I have had to learn is to speak up and advocate for myself.
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Thank you, IntoLight. I had my husband with me for the appointment when we got the news that I had mets, but we were both in shock and didn't think to ask questions. You are right, the fear of not knowing is the worst. I'm trying to focus on more pleasant things but it's hard.
Also, I haven't had a period for about a year. They tell me I'm officially in menopause which is great. Since starting Ibrance+Femara I've been feeling like I have period cramps, is this a common thing? I thought I was done with all that. It's so irritating!
Also I am newly diagnosed stage 4 with mets to lymph nodes, lungs and 1 spot on my hip bone after 9 years from my first diagnosis. I've tried to update my diagnosis but I can't seem to figure it out.
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Sparrow, I guess that its most likely a blood draw so that they can check how low your neutrophils have dropped. Its in the recommended protocol for the first month or two, to check it weekly or every two weeks right at the start. Ibrance and Femara are great treatments, but give the drugs some time to work, especially the Ibrance takes some months to kick in, some say its really not till 6 month scans or even longer that you will start seeing the really good results..
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Lnf,
What was used with me was called interventional pulmonary and it is considered an advanced diagnostic procedure on top of a general broncoscopic. It is something to definitely ask about if they feel it may be difficult to get a tissue sample. Getting a proper understanding of what type of cancer this is and hormone status if BC would be important and hopefully they now will be able to do that if the nodule is larger.
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Cure-ious: Thanks for the information on the timing of the Ibrance. I just started on that about 2.5 weeks ago. I have a doctor's appointment on May 30, which would be the timing for the end of my first cycle. Since I am not a very patient (no pun intended) person, I am sure I will be looking for results (lower tumor markers) at that appointment. My oncologist didn't give me any ideas about the timing but he is pretty non-committal about just about everything. Anyway, not lots of side effects as yet from the Ibrance so if it works I'll be pleased. We have arranged with our UPS delivery person to leave the pills if we are not home. We are very remote (it's Montana after all), so unless the bears get into the package we should be OK. He'll leave the pills under the cover of the grill so if it's raining or snowing we are still alright. We're retired and home most of the time so that should not be an issue for us. I really love this website - it's got more information for my cancer and treatments then I have every found. Thanks all.
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I am on zometa as an infusion in my port every three months which is good and doesn’t take too long. Since I live an hour and a half away from my mo our hospital/clinic area has a speciality pharmacy. They always call me on Monday and I let them know what day and time to call me back (I see my mo on wed) and they set it up for signed delivery once I get the all clear.
This round is kicking my butt. Nausea even with the scopolamine patch and still taking my ondesteron as a back up. Oh and the dry mouth is just terrible. Some days are better than others and I drink nothing but water occasional ginger ale or sprite. Next week is my brain mri yay so excited. First one too. Will keep yall posted!
Chani
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