Ibrance (Palbociclib)
Comments
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Snooky- Praying your scans go great. Yes, I was the one that was denied a PET. I had a PET on diagnosis in Sept 2017 and was refused a yearly PET this last Sept. As far as Nurse Practioner- Just my opinion, but I want to see the MO. We have an NP in my onc's office too and I asked to see the MO when I set up appointments. ALL cancer is serious, and the NP's are well trained, I am sure, but with Stage 4 I would think that would give us a pass to see the doctor. Have the NP do the 'routine' stuff with the patients that are doing 'well'- yearly follow ups, etc. I want the training of the MO for what is next in our treatment plan.
Leigh- So, what do you think about the issue with not the same radiologist reading the scans. If the plan is to wait and see what next 3 month CT says, and a different radiologist reads the next one will he/she know to pay particular attention to the area of uncertainty to see if it is something?? Also, why not a measurement of the lesions---possible one and original one---to see possible growth. An actual number to compare. The kidney stones mentioned in this CT had measurements and locations of 4 of them. But liver lesion---which is why I had the CT-- has no measurements just "similar to Oct. scan".
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Hi everyone! Gosh i miss you all when I am absent for a bit. Joyner - I am following your every detail and the amazing way you think things through, leverage your resources and move yourself forward, despite the fear and obstacles. I am so glad you have a plan in place and a path forward. Regarding the elevated calcium - I am going to choose to believe that this was kidney stone related as I think those who experience this from cancer are very close to the end and typically bedbound. At least that was my experience with my mom. So the way you look and feel is quite telling.
Ok so Frenchhorn - What a cluster! Inexcusable for sure!
Candy - your report sounds like a cause for celebration! Remember that Radiologists need to ‘cover their butts’ by noting every possible alternative but It appears he thinks it is a non-cancerous artifact. A follow up scan should prove that out.
Gum doctor - I read about your doctor somewhere and I am sad for that family but it sounds like you won by getting a new MO.
Grannax - the countdown to the catwalk begins! So excited to see you in your dress and jewels for the big event!
Snooky - i am in the same boat as you.... Pet scan yesterday. waiting for results. My July scan was NAED and I’m praying for the same this time. I will be thinking of you as we wait together!
I will let you all know what I get back.
Love to all,
Lauren
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Candy, you have GOT to stop taking something really good like that scan report and turning it into something to worry about. I spent my first year doing that until I decided that I needed to stop and enjoy right now. I would love to have that first year back. Once, I looked at the time a scan was read. It was in the middle of the night. Then I looked at the others. All read in the middle of the night. Think about that doctor reading stacks of scans in the middle of the night. There's the undone stack and the done stack. The undone stack doesn't seem to be getting any smaller. I'm not saying you should feel sorry for them but think about their mindset. And some supervisor may be looking at everything they write. They need to write something of substance on each one. There was nothing interesting to write on yours so this reader took a flyer and went for that thing about density. Ok, there probably aren't "stacks" because it's all done on computer but I like to put myself in the other person's shoes. Just try not to read too much into every single word on a report. Maybe the reader just needed a bathroom break.
chemokaze, I go to an in-person support group once in a while. We have one here that meets once a month. I met some of the women and it seems they all had BC about twenty years ago. I'm not sure why they keep coming. It's just a social habit. None of them have stage IV. They don't really want to hear much about my situation since I am their worst nightmare. They have a speaker each meeting and I go if the speaker interests me. It's not really much help and I would be way more interested if there was a group for stage IV people.
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Hello again old friends, for the newbies I've been off Ibrance since Oct. 2017 and just relying on the letrozole to keep things stable. However, I do lurk here a lot to check up on you all. Like many of you, I have a PET scan this week (Thursday) and my scanxiety is getting the best of me since it's been over a year from the last one. I just keep praying the letrozole is doing its job of keeping things in check.
Lynn and grannx, I'm so sorry to read of your progression and I'm really praying the next treatments will kick that cancer way down the road. Lynn, I feel like we are BC twins in some ways. I also had my cancer return after 25 years and it's a big shock, something we never expected. But, here we are still fighting! In many ways, we were are lucky to have so many good years and we're not done yet!! Grannx, I'll be watching for your big runway experience and praying all goes well and you have all the strength you need to enjoy it.
One of the other reasons, I'm writing today is to talk about the thinning hair you're experiencing. It's most likely the letrozole as I also have it without Ibrance. However, I've found something new I'm trying. It's called iRestore, a laser hair helmet. There is a thread on BCO called "thinning hair" and that's where I first heard talk of it. Many women are having good results growing their hair back. I've been using it about six weeks now and since it takes a few months to see results I'm not giving a review yet. It is expensive but there's a great gal on the thread called CalliKelli who has contacted the company and asked them to give women with BC a discount and they are doing that. If you send her your name she will give you the contact info. The best thing is that it's returnable for a full refund.
PatG, thank you for always being the cheerleader here. It really gives me hope on the many down days we have.
To Everyone, you are all always in my prayers!
Love and prayers,
Faith (in the future).
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Jaycee - great advice, as always. I had 15 years between original dx and MBC and I almost spent all of them fretting about getting MBC. I ended up seeing a cancer psychologist to get my anxiety under control about 2 years after dx. I am SO GLAD I did that because I was able to actually LIVE those 15 years rather than worry constantly, which is a huge waste of time. I try to apply those same coping skills to my current situation and I find it helps. With a PET scan this week, my anxiety was naturally higher but I didn't let thinking about it consume my holidays (which the old me would have done). So I put a lot of stock in your good advice to Candy. And I also try to think about the people who review our scans and write these reports. They have so many stakeholder in this process and they do this day in and day out. Some are more thorough than others, some have a better command of language than others and almost all are motivated to cover their butts by presenting all possibilities, even if the chances are remote. My oncologist is really good at dismissing those side notes on scan reports and reminds me that all radiologists hedge their bets when writing reports.
Faith -- Thanks for the advice on hair thinning. I'm almost a year into treatment and the thinning seems to have recently gotten a bit worse. I may look into this option that you are trying. Please keep us posted your review when you are ready.
Final news - I just got the call on my Pet scan.... I am thankfully still NEAD! My last scan was 6 months ago so I am elated. Faith, I hope you get similar results and to all those waiting on results --- I am thinking about you and praying for you!
Love to all,
Lauren
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Thank you, Lauren and woohoo on your NEAD. I'm seeing my MO this week and wonder if she will be ready to do a PET. I try to get her to wait as long as possible but I've only managed to talk her down to every four months. That seems to go by really quickly. I'm not looking forward to arguing with them over using my port yet again.
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Sheesh. Murphy's law gets me every time. This am. had apt for nuclear bone scan and a CT. So first they injected the nuclear tracer into my arm. I wasn't paying much attention when the nurse first stuck me. She said sorry about that. Blood from my arm was squirting straight up in the air. Yikes. What caused that? I asked. She forgot to take the tightening strap off and it was pumping out. No worries she said. I can clean you all up. I was wondering if she'd clean up the floor too when I got done upchucking. Seeing my blood pumping over my arm and the floor doesn't do much for my stomach. But I kept my cool...Then I went and drink a couple of cups of contrast. They called me back for the CT scan and said now drink one more cup of contrast. I said I didn't think I could, my stomach was very unsettled. But I did it. CT procedure went off without a hitch. Now I had an hour and a half to fill before nuclear scan could be done. So I ran a quick errand and grabbed some fried rice. Drove to hospital to enjoy my snack in the parking lot while I killed twenty more minutes. The first few bites didn't really sit well. But I kept eating. Then my throat started swelling and I felt a hugh lump in my chest like all the rice was just sitting there. Tried a few sips of coffee, they wouldn't go down either. So I half ran and half limped from the parkin lot into the medical building. Throwing up lots of thick mucus along the way. Help, I'm yelling I"m having an allergic reaction to the contrast, or the nuclear infusion or whatever it was I drank. Nurses were on the run. BP was racing face was pale. Everyone said it's been too long for a reaction, you would've had it earlier. Well, after sitting and shaking in a spare room I started filling better. One of the docs said I think your food went down the wrong hole!!!! (Is that possible??) So finally I got to lay down and get the bone scan done!!!. Worse 5 hrs I've had in long time. Home now and am ready for long nap. They are gonna have a hard time getting me back in there in three months. And after all of that I have to wait till end of week for results. Ain't life fun!
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Candy, the situation is two-fold. One is that interpreting scans is an art with nuances read differently by different radiologists.The bigger issue is that this was a lazy read by the radiologist. It happens.That doesn't change the fact that this is a good scan.
I second what Jaycee49 says.
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Well you guys tell it how it is. I am glad that things are stable, and I am living my life. I am not cowering in the corner in the fetal position over this. I guess I need to get the attitude "Well my Ibrance will come by Fedex eventually. If I miss some doses because the doc office was slow at the paperwork it will be ok. The medicine is still floating around even if I miss a dose or two." And "When progression comes, it comes. Now or 20 years from now. If this new thing is real it will be there at the next CT report in 3 months, if it is artifact it will be gone."
I thank God for every day I am here. God as my witness, that is true. And I know that God has my future in His hands and He will take me home when He wants. I don't think I am the only one though that reads their scan reports and worries. This group of ladies on this site don't seem like the types that has a lax attitude. I read every day on here that we research our disease- read articles and webinars on the latest advances in cancer research, new meds and treatments coming out, and then they formulate a plan for the next treatment. If we are actively planning the next step, then we are active in our medical care and not just thinking about the poor staff member that is overworked.
Snooky--- OH MY GOODNESS. Sorry you had that experience. Get some rest. Another story you have to tell about the fun of MBC.
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Is anyone on the ketogenc diet? My husband and I started that about 10 days ago and are really pleased with the results so far. I am just concerned that my blood work will be out of whack as a result. I have been on Faslodex for 2-1/2 years, Xgeva for 5-1/2 years and Ibrance since May.
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Lauren, Congratulations!!! So very happy that your PET was good.
As an aside, I do understand what you girls are telling Candy. I have OCD, and have struggled for years to keep it from controlling my life. If it gets out of control it becomes a monster. The smallest issue can become a mountain.
Candy, I also understand your position. You went to the scan, the scan was paid for and you want/expect to have a professional and reliable read-out. People shoud do their jobs to the best of their ability. Unfortunately, life just isn't like that. Some folks, for whatever reason are slackers. But it's ok honey, GOD has this reading covered for you too. (I know nothing about what your scan says, new to all of this) If the ladies here are saying it's a good scan, I'd take that and run with it. Stress is definitely not helpful. God Bless, dear. My prayers are with you.0 -
I also had some concerns about my scans being read “ right.” Last time I had a CT scan ( November) I talked with the tech doing the CT scan to get more information on how they are read, and is it the same radiologist, etc. He provided me with very good information and assured me that the radiologists are audited - meaning 200 of their scans are annually reviewed by an independent radiologist and if they don’t get the same results the radiologist is let go. That gave me some peace of mind. But that being said there is some uncertainty at times with imaging which can be frightening. Also your MO should talk with the radiologist about the results. I’m trying to get my MO to look at my scans before my appointment and talk to the radiologist too so when I come in I have all the information. Typically she reviews scans when I am there and then tells me she wants to clarify something with the radiologist and will call me. Makes more sense to me as a patient if she would do this ahead of time and I am going to make that request at tomorrow’s appointment for the February scans. And I’ll just throw this out there if it may help anyone. - I recently came across a book titled “ When Things Fall Apart, Heart Advice for Difficult Times” by Pemba Chodron. It is not a new book, 20 years old so some of you may be familiar with it. I’m not quite done with the book but I am finding it life changing for me. It really speaks to me and really would be good any time in life. It is a Buddhist view on life. Maybe it will help someone else. Wishing you all a good evening, love, and good scans!0
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WANDERING-I started the Keto diet after Halloween, great results for two weeks. Had mid-cycle Ibrance blood work and my liver function tests were 2.5X the norm. Stopped diet immediately and two weeks later they were back down to normal. That was the only thing different that I did during those two weeks. Let me know how it works out for you. I loved the diet, only stopped because of LFT’s
Jill
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grifff
Do you know if your functions could be off because your body was clearing out dead cancer cells? How would one find out?
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Snooky - what a horrible experience! I can’t believe you went through all of that and then completed your scan. That’s crazy!
Candy - I hope my comments did not offend you. i didn’t mean that at all. I’m just saying that you report looks really good - I completely understand your desire to better understand what the radiologist meant by noting the possibility that it is cancer but my read is simply that he is pretty sure it is an artifact of some sort but of course it could be cancer so that should be checked again in 3 months. I’ll be interested in what your onc says. In any case - we love you and are here to support you!
Love to all,
Lauren
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interesting article regarding Keto diet:
https://www.chrisbeatcancer.com/the-evidence-against-the-ketogenic-diet-for-cancer/
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with the sole exception, that he cites and does not dispute, is the 2018 Nature paper which shows the keto diet is necessary for a good response to PI3K inhibitors, like Alpelisib
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Good morning, all. Had PET yesterday (for comparison to those in April/Oct which showed nothing). We shall see. Start radiation to hips this AM: 10 min for 6 days running.
Lauren, HOORAY on your NEAD!!!!!
Faith, I loved seeing your name and hearing from you. I also cut and pasted your hair idea into my Xeloda document (full of cut and pasted recommendations from the Xeloda site). Thanks!
Candy, I agree with Lauren, Janet, et al about your scan. Sounded good to me, but boy, do I understand reading things into everything! I read scans with Google at my side. I'll be ready to take the medical exams before this is finished.
Snooky, HOLY COW!! Adding insult to injury!
And Katy, I ordered your Chodron book...thank you!!
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Good morning, everyone! I have my 6-month PET today, and for some reason, this one is making me nervous. In July, I was "No Active Disease", and I'd really like to stay that way! My last two scans didn't make me very nervous - even the first one after I started the Ibrance. I'm pretty much a "what will be, will be" sort of person, and nothing about this usually worries me much. I think it's because I'm exhausted.
My mother-in-law is 86, and dealing with some very unpleasant ulcerative colitis issues. She is also exhibiting signs of dementia? senility? Alzheimers? Last night she called me three times - at 10:30, 1:45, and 3:15 - to tell me she saw blood when she went to the bathroom (sorry if TMI).
Yes, Mom, that happens. No, Mom, it's not true that it's never happened before. Yes, Mom, you'll be okay. No, Mom, I don't need to take you to the ER. Yes, Mom, I'll talk to you in the morning.
She's fine during the day. At night she doesn't sleep well (can't take anything because she needs to be alert enough to get to the bathroom if she needs to), and forgets everything. Then she panics over the slightest thing, and calls me telling me she wants to die. I spend about ten minutes calming her down so she can get back to sleep. My husband tries, but she just gets aggravated with him, so it's my job, LOL. This morning she won't even remember saying it, or calling me, for that matter.
I'm going to go take a nap, and I'm sure I'll fall asleep during the prep AND the scan itself (I usually do!). On the plus side, when I'm at Sloan-Kettering, my phone will be turned off
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Oh, Ciaci.....!!!
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Oh Ciaci, you just fall back asleep and she calls again. Nap sounds good, hang in there. Let us know your scan results. I find out my CT scan results this a.m. Bracing myself for bad news, but may be surprised. Started Xeloda last night.
So, so happy for you gals with good scan results.. please keep sharing those positive things! Love celebrating with you.
Snooky, hugs!
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Ok one more post about all this with my scan then no more talk of it for 3 months.
Snooky- YES !! And thank you for your comments.
KatyK- I agree the MO should review our scans and discuss with the radiologist BEFORE our appointments. In my case, with scans every 3 months for the last year and a half, when I go to my appointment the MO says "When was your last scan?" then pulls up the report on the computer and reviews it then. Seems like she hasn't seen it until that moment. Then I expect a discussion on the results and the plan from there. She hasn't had time to formulate a plan!!!
Lauren-- We are ok.
I was somewhat upset by some of the comments that were posted. I did relook at the results and they were read at 7:10 pm, not in the middle of the night. I don't know if the radiologist was hungry (not had supper yet) or needed to go to the bathroom. As I posted, ours is a community hospital and I don't know how many radiologists are staffed there, but I looked at the name of the reading radiologist and I know he is a senior staff member and has been there a long time. So not a resident radiologist. Of course, he has a boss also to answer to. And maybe his work is be audited also. The good thing is he is knowledgeable. But, as I posted, he looks at all types of scans---from broken bones to cancer in a small hospital (not a cancer center).
Frenchhorn- Praying for good results. Let us know.
Caici- Praying for your PET today. And then go home and take a nap.
Joyner- Praying for your PET results and hope radiation gives you some pain relief.
Hugs to all.
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Candy, I hope we are ok, too. I just can't censor myself any more than I already do. I don't want to start a snarky Ibrance thread or an irreverent Ibrance thread. I like being here on THIS Ibrance thread where my friends of three years support me and I try to support them in my own way. I think it is important to laugh, especially at ourselves. I leave for weeks, sometimes months, but always come back because this is where I belong. And I will never stop posting about the financial issues because I know there are people who need that info.
Caici, my mom had Crohn's disease. I was across the country but my sister was five minute away. She got the phone calls at night and spent many nights in the ER. It was a hard road. Not a fun kind of illness to have. It sounds like you have the magic touch with her on the phone. That's so generous and loving of you.
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Hi all;
Have been catching up with all the news and wow...so much. Happy New Years to all.
Just wanted to comment on the CT scans. My last one 2 months ago (I posted all about it previously) infuriated my onc who went and spoke to the head guy about it during my appointment. I have a feeling that unless they believe there is a problem they don't have the time (at least at my hospital which is a large cancer centre) to question every one. However, there were issues with mine most obvious being that my original tumours weren't commented on at all. I am now on high alert to question the scan results and am currently waiting anxiously for the results of my scan last Friday which I am hoping will confirm that the large amounts of "things" (can't remember what they were called) were indeed lymph nodes and not new tumours. My scanxiety is very high right now.
I am praying for positive results for all. Joyner and Grannex praying new meds give you immediate positive results.
Cathy
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morning, been mostly reading and not posting
I am still on Madam x but mo has been watching closely and told me my next li e of treatment is likely ibrance so learning what to expect.
Been dealing with what i think is stomach flu so sort of off!
I am going to msk in middletown nj, been very pleased with all there, just spoke to mtg person as i was thinking of trying to tap into that policy but not sure if i will qualify
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Hi All,
I haven't visited the Ibrance thread for some time since it did a number on my RBCs and as a result I had to stop quite in August 2017. I wanted to comment on one post which I can't seem to find now. Someone indicated the Xeloda thread was quiet (not sure if it was you Joyner) and I wondered if they have the wrong one. There is a thread entitled "All About Xeloda" that is very active. I was on Madame X for a few months and found there was a lot of great information there.
Pat
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Jaycee- We are ok. Your post did sting a little. I am praying that the "artifact" is nothing, and I am happy that the original tumor is stable. I was talking with someone this morning and they asked how I was doing---they had no idea I had a CT last week. I told them that I had a scan last week and they saw a 'shadow' (my explaination of artifact) and that it may be something and it may not. We will see if it is still there in 3 months. That is how I am viewing it. I just don't think we, or the MO, should discount what the scans say. The radiologist saw SOMETHING and made note of it.
Please keep posting. I want you to. And your financial information and advise is needed and wanted. This disease is sure expensive!!!! Too expensive.
Hugs to all.
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Ok, so I said no more talking about my situation. But I have to post this. The Irony of Life. I laughed and laughed.
So I posted I am waiting on my refill of Ibrance. It is pending prior authorization with the insurance company-the authorization expired in Dec. I was due to get the refill 2 days ago, but I have some pills left from another bottle I am taking now. Unsolicited I received a call from my MO office nurse this afternoon. The nurse said they wanted to keep me in the loop. The insurance company wanted more info that I had not progressed while on Ibrance. I nearly choked on the water I was drinking. You will be proud of me. I acted nonchalant. I didn't mention the CT or my concerns about the CT. Neither did the nurse. I said I hoped I got my meds soon as I am about out and our area my have a snowstorm on Saturday, but I was calm and collected and acted like I didn't care one way or the other.
With all my concerns I may have something new brewing on the CT I thought this was way too funny.
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That is funny, Candy! It’s always good to laugh at the irony of life. Hopefully your meds will make it to you soon. 😊
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Just came back from my MO appointment- it was the best appointment I’ve had there! She was attentive, listened, gave me eye contact, let me ask my questions. What I’ve always wanted! Not sure why it took 18 months to get this appointment, I‘ve seen this MO for about ten months, switched to her as I did not really trust the first one. Anyhow, just wanted to share this good news. I almost cried at the end of the appointment as I was so happy
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