Ibrance (Palbociclib)
Comments
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Good luck Z, you got this! Thanks for your thoughtful and informative reply re vacation. I have an MRI on the 25th, then I see PN on the 26th. I am just going to state what I want and why. If she has an objection, I will carefully evaluate, then depending, probably do what I want. MO is not going to be happy. He does not know that I still ride. I discussed things with RO and palliative Dr and they said they thought it was ok, as long as I was careful. They both shared MOs concerns, but felt he was being a little over protective. I would rather have him overprotective than uncaring!
Thank you to everyone else for your caring posts! I will take lots of pictures and share! We are going to be there at peak leaf changing, so the colors should be beautiful!
Hugs and prayers
Claudia
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Hoping for great news from your scan Zarovka, will be thinking of you and sending positive thoughts.
I had a blood test today, neutrophils a little low but not so bad I can't carry on with the 125mg dose, so will be beginning my 3rd cycle tomorrow. Now, 4 weeks break from the hospital, yay for longer time to get away for holidays.
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My MO did fire me, but I didn't take him up on it because I'm fine with him. I was trying to ask a question and he was going on and on about the new plan, to which I wouldn't commit without having my question answered. So then he suggested I could get a new MO. I'm fairly happy with him otherwise so why go through the hassle to change. I also like the whole idea of the office portal where I can get my results almost as soon as MO's office does regardless of when my appointment is. Bedside manner is not important to me just the facts.
Z, good luck on the PET, perhaps I should be happy that I just have CTs with contrast. I can't eat 4 hours before is all they ask and my MO's order deletes the chalky milkshake.
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Z, you got this. My instructions also include no exercise 24 hours prior like you said. I am a compliant person so I do things to the letter. The tough thing for me is no caffeine! I agree the number differences seem insignificant. I will be praying for you at 4:00!
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No CAFFEINE. That was it!!! Just finished a cup of black tea. The upside is I am more likely to arrive at the facility alive.
In truth, no one has ever given me instructions before a PET scan except for the fasting. I found out that other things effect the PET scan here on BCO ... researched it and found the caffeine, carbs and exercise all increase SUV uptake. Then I asked the scanning facility and they said ... oh yeah that's right. No caffeine, carbs or exercise. Would you like a list of foods you can eat?
>Z<
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Z, you are in my prayers also today that it's all good news from the scan. That uptake was minor the last time, could be anything. I had some uptake in the region of my bottom causing by straining with my last scan. So anything can cause increased uptake. Hang in there, it will be over soon. We are all thinking of you and pray for good results.
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Z, people down here in Southern NM had to drive to Albuquerque for Pet scans before we got our "portable" machine in a truck that travels around the Southern part of the state. My MO had everything to do with that so I should stop complaining about him. I'm curious. How do you end up with a Pet in August and another one now in Sept? Mine are every three months and now he wants to wait six months.
cive, when I was fired by a doctor about twenty years ago, I didn't have the choice to "not take her up on it." She sent me a registered letter saying I could not see her or any other doctor in her practice. It was (probably still is) the largest GI practice in Albuquerque where I lived at the time. It made my life a little more difficult but not impossible. Here in Las Cruces, there is one GI practice, one neurologist, and very few oncologists. That's why I live in fear of pissing one of them off. What did I say to get fired from that doctor? "I have a PhD in statistics and I read clinical trials." (She was telling me about a trial she had read. I asked her to give me the reference.) She put down what she was looking at and looked at me. Then she said, "you are going to have to see someone else." I'm shaking right now writing about it. It's like I have doctor PTSD.
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Jaycee, did the letter explain why she was firing you? That would be terrible! I think my MO fired me more because I had progressed and he had a plan and didn't expect me to ask questions. Also he's young, probably in his 30s.
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Z I hate, seriously hate, the prep for PET. I'm diabetic so they have told me that f my glucose is higher than 200 they won't do the test. Tech said it's because the glucose they give me could cause my bs to go dangerously high. On the flip side, they tell me not to take my diabetes medicine ( I'm not insulin dependent). Makes no sense to me. But, the no caffeine and a 2 hour drive would be impossible for me. Thank goodness my daughter can usually take me and it's only a 30 minute drive.
I hope the best for you today. I know the scanxiety is there but I'm praying for reduction of uptake. With all your research, you're prepared for the worst but hoping for the best.
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Z, I was given a list of things I can eat. Do you want it if I can find it? I usually throw it away because they always send me a new one.
Jaycee, really? I told my onc the same thing; I have a PhD although not in statistics, but I have taught stats it in a pinch. She just laughed and said good, and then promptly showed me her phone where she had pulled up the research. Sounds like insecurity to me. I have never heard of an MO firing a patient before this. I am ready to change my pcp because I have not seen her since my bc dx over a year ago. Every time I need her, I have to see someone else because she is not available.
Chris
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jaycee - everything from dosing to treatment choices to when you scan is a judgement call with a range of correct answers. my onc recognizes that. As a rule, it's harder to ask an onc to do something they don't want to do (sign this prescription to add a treatment) than it is to decline what they propose (i don't want that treatment, i would like to wait longer for a scan). The right to say no is any patient's absolute right.
in my case, the cancer seems to be controlled and i don't want the radiation. we'll find out tomorrow if it was a good call to delay.
if you want a brilliant iconoclast on your side, try Dr. Berkson in Los Cruces. The older one. Amazing physician. The first alternative oncologist I saw. I believe he changed the course of my disease significantly and for the better.
>Z<
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cive,
This doctor was young, too. The letter said a lot of weird stuff about a story I had told her about my mother who had Crohn's and another I had told her about my sister who had breast cancer. (We were sitting in the exam room waiting for results. What doctor even does that?) The letter also had my age wrong and said I was obese. (I weighed 135.) I was in shock for days, months, obviously for years. I need to get over it.
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Z, do you also get CT and bone scans every 3 months? I have never had a PET scan.
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No. i had one CT/Bone scan early on. Then I got a couple PET scans with a full CT to get a measurement of the tumor size but I have to do it at UNM and they are a pain. Also radiation dose of a full CT is multiples higher. I try to minimize the radiation I receive. The last scan and this scan have been PET only. CT is used but only to orient the PET results relative to bone structure. Very low radiation dose. PET scans tell you what is active so it does effectively monitor the cancer for a low "cost" as far as radiation dose is concerned.
I would like to have a full CT with PET at some point in the future, maybe once every two years, to find the dormant tumors that do not show up in PET. However, that requires dealing with UNM. Last time they sent me the wrong scan report, which suggested progression. Before we figured out it was wrong I had a heart attack.
Pluses and minuses to both techniques. Depends very much on what you are looking for. CT, for example, is arguably better for ILC as long as the radiologist is experienced in finding the ILC in a CT scan. ILC does not show up on PET scans much.
>Z<
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Good luck with your scan Z! Get something really good to eat when you're done!!
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Good idea, Lynnwood. I'm thinking Santa Fe on her way back. There are some amazing places to eat there.
Lilliemillie, don't forget to enjoy cycles 7 through 16. I wish I was back there at cycle 6. We tend to rush things along, at least I did until I realized that I better enjoy the now. I'm sure you will get there. Just enjoy each day along the way.
Z, I emailed a friend who went to Dr. Berkson because I don't remember what kind of experience she had. I'm pretty sure he doesn't take any kind of insurance so that could be an issue. The older one is 78 so he may be retired by now. I'm checking. Thanks for the info.
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Good luck Z. A two hour drive decaffeinated and starving is not pretty.
I have spent a large portion of the last two months on antibiotics. Lots of sinus infection. I have only completed one complete cycle of 100mg. Just asked my MO to drop my Ibrance to 75 mg. I am hoping my WBC and RBC will rise a bit on 75 mg. I have spent too many days on my sofa to tired to move.
I am anticipating 10 days of cyberknife knife radiation in the next 3 weeks to zap a bone met laying on my occipital nerve.
Just to add to the fun I found a small hard lump on the back of my neck that might be a lymph node.
Only 6 months since diagnosis and it feels like nothing is working
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I hope your PT goes well Z!
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Z - thinking of you! Scans should be done by now. Anxiously awaiting your report! YOU ROCK!
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Thanks all. Much easier than CT because there is no contrast. They just inject the isotope and then take out the IV so you are not walking around with an IV. And then ... there is no contrast to have a allergic reaction to, which is helpful. I do not miss CT's.
It's over. XRAYNM posts the results on the patient portal the next day. No nonsense. I'll know tomorrow.
Yelled at my daughter when I got home. She was a bit sassy and the dishes were not done. I hide the whole cancer business from them. They don't realize when I am having a rough day and they need to step up. I should have been clear that I had hadn't had a carb in 24 hours and I was going to be on a short fuse.
So tired ...
>Z<
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Z!! Breathe-breathe-breathe!!!
One scan I forgot to fast, I had eaten something two hours earlier-- they said it was fine.
Last time I was sure that new hip pain would be progression- nope
I am just a bit ahead of you, on cycle 25 now, you can cross that 2 year mark and still exist on the other side!!
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Hi Z, glad it is all over and you did ok. I can't imagine having the results just posted online but it is better than having to wait a week. I get a PET scan every 3 months (the next time will be the first 6 month interval) and it is usually no big deal. My DH takes me out to eat afterwards so by the time I am home I am calm. Fortunately, we live only 30 minutes from the hospital and he has the freedom to take the time off from work.
We all treat our families different which is as it should be. I don't advertise my bad days to my family either but sometimes I just have to tell them today is not a good day and I won't be cooking dinner which I usually do. They take it from there (usually take out as neither of them cook.) I have spoiled them! My DD does the dishes because I am exhausted by the time dinner is cooked. Works for us.
Rest tonight. I have been praying for good results.
Chris
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Jaycee - The older Dr. B still works. My friend just went down there to see him. He does not take insurance although the testing he does is covered by insurance. The supplements, IV's and visits add up. But he set me up with a routine that I have mostly kept up with and, for various reasons, I believe has helped.
>Z<
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I must be on a similar cycle to you I just finished my third round of I ran every letrozole today and Will have scans in October to see whether it is working Very little white counts .6 that have infection and ended up in hospital second round but did better this round. Feel really good and no longer have any pain on these meds so I'm grateful and hope I can stay on it
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just finished third round of Intance and letrozole. Cat scans to be scheduled for October Never had a pet scan do they both show similar results Yes one type less hard on the body do not like the contrast dyes
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Glad all went smoothly with the scans Z. Hoping for positive results for you. I have never heard about the no exercise, carbs or caffeine. I get a full body Mri each time along with a ct scan (no contrast). I don't hear mention of many getting mri here on this thread. Would the no excerise, carbs or caffeine be applicable to me? I was told light meal 2 hours before but of course i'd probably have a couple of coffees and normally some type of carb down my neck. Its interesting to learn these thing. Previously I used to drink green tea by the bucket load until I heard on here it interferes with ibrance! For that alone I am thankful to learn. Want to give myself the best chance. Scans in 2 weeks. Would love to get into double digits! Also reading on here thoughts about how it works. I was stable after 3 months with reduction in my pleural effusion (It's quite small but reduction is good). Obviously I would have liked dramatic results so I would know this combo was actually working. I do have increased pain in hips this cycle so obviously nervous.
I can't believe that a few people have been fired by their doctors. Very traumasing. Only natural to question and ask for reference. Major insecurities! Life is hard enough without having to massage their ego! Especially as a lot of us have asked for second opinions.
Wishing everyone the best.
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Lillymillie- the PET uses fluorodeoxyglucose which is why no exercise (I was told 48 hours) before the scan and no carbs for 24 hours before and no caffeine and fasting for 6 hours before the PET. After the injection I must wait in a dark quiet room for ~ 1 hour before the test which only takes about 20 in the machine. I am allergic to the CT dye and need major pre-medication to have one, so hence the PET. Although Z says that the PET does not show the ILC cancer well- its a sneaky cancer, which scares me to find out. There was a marked difference between my pre treatment PET and my 3 month post Ibrance/Faslodex. (there are other kinds of PET scans that don't use glucose and I am not sure what their prep is.)
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Good morning...
Z....Waiting with everyone to hear good results from your scan. I'm never anxious to open those portal results until after I've talked with my oncologist....you are brave -- I am not!
I don't know what kind of scan I will be getting in a couple of weeks. I do know that I've had CT's with contrast, for other issues in the past, and have never had any problem. I've never had a PET scan.
Question -- my 3rd round of Ibrance/Letrozole will be finished a few days prior to seeing my oncologist on Oct.5th. I presume my scan will be a few days prior to seeing him. Will my Ibrance automatically be refilled at the end of this cycle? I hope I'm making sense. I've never missed a dose in the past 3 months -- and don't want to unless it's a necessity.
Off for breakfast...
Hope
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With the second drop in TMs on Ibrance and Faslodex, I don't have to have another scan until December, my MO gave me a choice of before or after Xmas. I chose before on the premise everyone is full of good cheer at Xmas. With the reduction in dose to 100 mg, I only have to have blood work monthly. Yeah!
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hello everyone, Hope all are having a good day and we are going to hear great results from Z soon.
Cive so happy to read about your second drop in TMs!
A question - I had my end of cycle 2 check and discussion with my Onc yesterday. Told her I have no pain, feeling reasonably well. Typically last night I started with excruciating pain in my legs, mostly muscle pain in the thighs. I am assuming from what I have read this is due to the Letrozole. I did have a zometa infusion yesterday too but don't usually have problems from that. Just wondered if anyone else got muscular pain from letrozole so long after starting it and did it improve? Ibuprofen is helping for now.
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