Ibrance (Palbociclib)
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I call Phizer directly to get refills. The rep repeated my order, I asked if I could get the caps, she said no.
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Rabbit, thank you for your thoughts about restarting the Ibrance - my MO is very optimistic about trying 75mg, although she wants me to get weekly (!!) blood draws for the next couple of months, to keep a closer eye on things. So we're giving it another shot, which I'm grateful for.
My husband and I celebrated our 21-year smooching anniversary today (when he first kissed me over a plate of tortellini, which is great combo!) Glad to be alive today.
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Thanks to all who responded to my question about ibrance cost. I'll talk to my mo this morning ...
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Jack5ie and Candy, regarding Xgeva -- My oncologist switched me from monthly Xgeva to twice-yearly Prolia. Prolia is also denosumab, but a lower dose (60mg instead of 120mg). So I'm getting 120mg every year, instead of the 720mg I would have gotten on monthly Xgeva. I had a bone met, but it was resolved after six months on Ibrance, so she felt comfortable lowering the dose. My bone scans have been fine on the Prolia.
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Jack5ie - I’m sorry that you had progression. To be honest you did freak me out a little. I’m only on my second month of Ibrance. When I read your remark about capsules versus tablets, I thought “great, I’m not getting the best version of Ibrance.” since I’ve been taking the tablets. I’m hoping there isn’t a difference, but I totally get it about trying blame something for things going wrong. We need that sometimes because we know we are doing all we can do to stay alive.
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RosieRed...I'm so sorry. I should have kept my thoughts to myself. Pfizer is a very reputable company. They wouldn't put something out there that doesn't work. I'm sorry I freaked you (and anyone else) out.
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Cross posting from the bone mets thread.
So I haven't started Ibrance/Faslodex this past Monday since my doctor is looking into new treatment. But I did get my Xgeva injection. When I was on Ibrance 125mg I was getting mouth sores/mucositis/geographical tongue so he brought the Ibrance dosage to 100mg. That seemed to help some although I still would get a few days of this reaction. Well since the Xgeva injection on Monday the symptoms are so much worse! Could it have been from the Xgeva all along or is it possible it's an Ibrance withdrawal reaction? I'll ask my doctor when I speak to him but just wanted your opinions.
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Oh la la Cakes
congrats on a second try on Ibrance and celebrating a big milestone anniversary Tho you may be smooching over toot-a-lini instead, lol. I scared my cat the other day, I sounded like a kettle whistle. Either that or fred flintstone clocked outta work. You never know the sounds your body is capable of until you try Ibrance The extra bloodwork sounds like a real good plan. Onward! Ibrance tablets are a gas, gas, gas!
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Rabbit, thanks for the laugh!
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Rabbit, I laughed so much at your post, I, well, tooted.
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My husband calls it "relaxing".
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When I got off the bone scan 'bed' I let my technician hear a good one. He kind of deserved it.
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hi all:
It’s been a while for me on this site. I have couple questions and appreciate time and wisdom shared:
•I’ve been on Ibrance/Letroziole for 42 months & having routine abd/chest CT Scans every 3 mos. is this the “protocol” so to speak when on this Med regime? My doctor keeps suggesting 6 mos or 4 mos and I’m comfortable in my 3 mo. Routine? He wants me to stress less and thought is if spread to 4 mos then I’d have 3 per year vs for=less stress. Maybe for him; but I think living 3 mos-3 mos is hard enough and just don’t want to change things up?
•I have deep deltoid pain/weakness (feels like I got punched and there’s a bruise inside my arm; every day) on rt side x5-6 mos and I’ve mentioned to MO I’d like a Bone scan as I’ve got all the syptoms-(it doesn’t subside with rest (actually I wake up in pain); I have trouble emptying bowels/bladder, and typical modalities for arthritic/muscle pain do not help (ice, heat, massage, spa, epsom baths). Trouble is his NP answers emails re: request fir bone scan with “no” & he actually said no at my ladt visit; of course I have confusion/scattered thoughts and cannot always articulate in person. When I had 3 massages I was in excruitiating pain with tears involuntarily rolling out and some sobbing (though I wanted to keep going with massage in hopes that it would resolve the pain-it did not & each time I suffered. So I’m at MO mercy; I go Monday to see him in person. Btw: I had baseline bone/brain scan @ ~6 mos & 1 ur later after mets DX (in lymph n lung) & now it’s going onn1.5 years since last Brain/Bone scan. Any hints recommendations: I feel I know my body but I feel he (MO) is not hearing me? Is it time for new MO; I love him other than this as he is UCLA doc who worked onn1st Ibrance stage 1$2 trials & encourages me that 1 woman has been in combo fir 10 years now!!! •My last CT Scan showed “calcification in arteries” which mo didn’t mention; but my primary doc wants me to see cardiologist-MO said they didn’t want me to worry that it is normal for 55 yo woman to have this. I saw cardiologist anyway, and wish I hadn’t-he of course prescribed Lipitor 10 mg (which major side effect is myscle pain/weakness)? Plus last years brain scan showed “”infarction” and I never explored that with cardiology as my MO said not to worry. I’d like a brain scan too to see if any other infarcts occurred silently and r/t cognitive (forgetful/& brain fog issues); bug I’m aftaid to ask for that in addition to bone scan.good news: I got vaccinated-had 2 days put me down side effects then nothing!! Good luck with others waiting & stay positive/stay safe.Visiting my 20 y.o. Dtr in ZLA next week; it’s been 5 weeks; killing me she’s away at college. 5- hr train ride each way is gonna kill me; but I’d walk thru fire or worse for yhis young lady & we miss each other so much! I have to travel alone as husband who works remotely doesn’t want to go cuz he hates la; my dtr & I want alone time anyways. Prayers she convinces her bf to drive her to my home instead=5 hrs away or my 20 yo living at home son decides to step out of his self and decides to drive me to/fro LA =2 hrs each way from my home. He said he’d take me anytime; then wen I asked said no! Oiiii!!! Luv to sll. Be well/be safe!! Thank uou fir your time.
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Bailey5, I don't know if this is used on arms or not but it worked miracles on my upper legs so I'll pass it on to you:
Physical therapists can help with a technique called Myofascial Release that uses sustained pressure to loosen and lengthen constricted fascia. It breaks down adhesions between the tissues and softens and re-aligns them, freeing up muscles and allowing easier and more effective movement.
When I sought treatment I had just been diagnosed with mets in my femurs so I consulted with both my oncologist and an oncology orthopedist before seeing a Physical Therapist. Insurance first approved me for 13 weeks of treatment and, turns out that was exactly what I needed! I had close to 100% relief and the pain hasn't come back in the past four(ish) years!
Like you, I was in tears during the early weeks of treatment but I look back now and it was so worth it. This was not done like a massage but with extended pressure on a spot before moving to the next. Sometimes the PT used her hands and others she used a stick designed for that purpose.
I'll add that when I tried to take Letrozole after the first mets in 2012, I had terrible discomfort/weakness in certain places. I look back and I'm quite sure it was in my ligaments. I quit that drug and in less than two months the problem resolved. When I started Ibrance in 2016 I chose to take Arimidex and did much better though I did have some arm pain/weakness. When I switched to Faslodex a year ago that resolved. Have you considered asking to switch to Ibrance/Faslodex? Just a thought!...........................
About time between scans, I do much better if I wait at least 6 months. I've sometimes needed to do them 3 months apart but that doesn't leave enough time to be free of scanxiety for me. I believe we must figure out what gives us the best quality of life.
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There's nothing wrong with getting a second opinion about treatment plans. Do what you would do if your daughter was the patient. That's always my gauge.
Love from PatGMc (who has had PET/CTs, no bone scans)
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Bailey5 I started with scans every 3 months but for the past 3 years we do it a 6 month intervals. I’m on ibrance faslodex. One other lady had her scans once a year. Definitely whatever you’re comfortable with. I hope the pain issue is resolved soon.
Tany
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Rabbit- How did MO appt go?
Snow-drop-- Did you ever have your spine MRI?
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Bailey, I'm on Cycle 49 of Ibrance/letrozole. I've had clear scans for over 3 years now. I get a PET scan, blood work, and see my oncologist twice a year. I'm very comfortable with the 6-month scheduling. If anything happens, I can call her and she'll get me in, but I've never needed to.
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Candy - MO appointment went alright. Went over scans. She confirmed essentially stable, very slight dimming on imaging of the trochanter part of my left femur and everything else looked the same and/or very slight increases. The word diffuse is used frequently in my reports in regards to my bone mets for each location - diffuse means innumerable or scattered, right? Discussed bone scans showing alot of degenerative stuff in the joints/back besides the cancer that appears worse at each 3 month scan now that I am post menopausal at 39 thanks to oophorectomy and the treatments. I've aged ALOT in my bones and I feel it. Was glad the bone scans are picking this up and it wasn't in my head. Zometa infusion after MO visit, infusions are hit or miss whether I will feel badly the following day. I felt this one. Felt awful Saturday, bones hurt and i didn't feel like eating or doing much, so i vegged and nibbled. But perked up today. May 12th see MO again, last 3 month Zometa in July, after that every 6 months Zometa. MO thinks i'm doing well. Don't know TMs yet. Will probably get a call on Monday with my tumor markers. Happy to try to be free of the cancer floor for another month.
Cycle 18 100mg to commence shortly. How goes things on your end Candy?
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Rabbit- Yes, diffuse means innumerable or scattered I believe. Woohoo for "essentially stable". I have my MO appt next Monday the 19th. We will discuss the Guardant results- which was like nothing, nothing seen. And we will discuss the liver tumor boards recommendations. What is my next plan with the "small, steady increases" in my liver met sizes. I will report back what is decided.
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Candy, in your pocket for the 19th. Shoot on Guardant not seeing anything. Curious to hear liver tumor boards recommendations.
Jackie if you were tooting morse code to that chatty tech. I say bravo bravo and encore encore. I wish I could of popped out a message or two to that tech yanking my arms around this last bone scan. If Ibrance is going to give me gas, i wish i could use it to my advantage at strategic times, tho it providing me my one bit of humor in all of this suffices sometimes. In your pocket as you wait for Foundation One.
Newbies on Ibrance, how are you guys doing, RosieRed etc. How is it treating you guys so far?
I was thinking last night I wish our scans and bloodwork provided a window seat to our MO's and others into the emotional and annoyance part of everything we go through. Like:
"Evidence of patient frustration with cancer. Deep seeded anger and sadness at endless doctor visits and bloodwork.. Scars of a broken heart from hearing news of diagnosis. Patient is fed up with it all".
Hugs ladies
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Candy - in your pocket for 4/19 appt !
Bailey - I am getting pet scanned every quarter but am 1.5 years @ stage IV. I don't know if my oncologist will space out my scans at some point. Reading that you are 32 cycles on Ibrance and Ciaci at 49 gives me such hope! I feel pretty ok on Ibrance / faslodex and would like to stay on it die a long time .
RRabbit - I have not had gas but some times at the cancer center it could come in handy as a defense , although most of my techs have been gentle and kind (so far !). Too bad the scans don't show the emotion scars we carry.
Hope everyone is doing ok this week !
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So I have a tooth that broke and need to get a crown. Does anyone know if this is considered invasive? I’ll be talking to MO’s nurse tomorrow to see what they say, just thought maybe someone might have been through this while on Ibrance.
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Cross posting (since you guys are in for pocket duty for the 19th, here is more to be in my pocket for)-----
I have had pain in my left shoulder for literally over 3 years. In 2017, before the cancer diagnosis, I was told I had a small partial rotator cuff tear. I was getting physical therapy when I was diagnosed with the cancer. Life stopped. PT stopped. Priorities. The pain has continued, and worsened lately. So today I went to local ortho doc. X-ray shows possible bone tumors, possible avascular necrosis, possible stress fracture. MRI pending insurance approval. I messaged my MO nurse. Can they review x-rays or MRI for their oncology take on this? They will not review x-rays, but will review the MRI when it is done says the MO nurse. I asked about an oncology orthopedist---- they don't have one. HUM. A NCI/NCCN cancer center with no ortho oncologist. HUM.
Read avascular necrosis (if that is what it is) can be from bisphosphonates-- Xgeva--, like ONJ.
I feel my MO is missing my bone mets seriousness. I have posted here before that she concentrates on the liver, with CT's and MRI's of the abdomen, and does not monitor the bone mets. Last bone scan May 2020 didn't show much uptake, so are bone scans a good indicator for me? Last PET was Sept 2019.
I am frustrated.
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RRabbit - I just finished my 2nd cycle of Ibrance. This is my week off. I am doing pretty good. My hair has thinned a bit. I have noticed quite a bit of brain fog and mixing things up like trying to put the milk container in the pantry instead of the refrigerator. I catch myself, but it’s like what the heck was I doing? Last time I saw the NP, she and my MO agreed that I stay on the 125mg tablets. We shall see what my blood tests show next Monday.
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Candy - I would be really mad / frustrated ! It's so upsetting that you have had pain for 3 years and the oncologist is not investigating it property. I hope you get the mri approval soon so you can have the mri/ get results . I don't understand why they won't review the X-rays ? I'm really sorry you are dealing with this .
Rosie - I haven't had any dental crowns or fillings since I started Ibrance - I think it's a good idea to call the MO nurse. Sounds like your first couple of cycles of Ibrance went ok, which is great . My hair also thinned quite a bit. Let us know how your blood tests are next Monday .
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April, Thanks for your reply. My MO’s nurse said just to hold Ibrance 1 day, the day of the procedure. Easy enough. And btw, there are two of us Rosies here, RosieRed is the one with bloodwork coming up. Good luck, RosieRed!
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hi all, just want to put myself on board here as another newbie ibrance taker. I started my first dose last night & took an anti- nausea pill with it as prescribed - so far, so good, no nausea, which I have an almost pathological fear of!
Candy, my left shoulder pain ( & left arm pain ) turned out to be caused by cancerous lymph nodes in my collarbone & back areas ( or so my oncologist feels ). Hopefully the treatment will help shrink them & help with the pain. I do hope that you get some resolution soon! Pain sucks!
Hope all are doing well as can be & will follow to see how others are doing with ibrance
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Also an Ibrance newbie, starting this evening. Also nervous about nausea/vomiting which I've already struggled with through 2 weeks of radiation and then my first infusion of Zometa.
Amanda6. thanks for your report. I truly hope you continue feeling ok. Can I ask what kind of anti-nausea drug you took that worked to prevent nausea? I have two (Zofran and Compazine) and am wondering which would be most effective.
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Welcome to the Ibrance Dance, Prairiesea and Amanda6 and any of you newbies who are reading quietly!
This is a great drug and many have been on it since the trials began! I had my first mets in 2012 (chest wall tumor) and started 100mg Ibrance in 2016 (widespread bone mets). I left it for a little while last year to try something different (Lynparza) which my body didn't like so much. Had some progression and came back to Ibrance but with 75mg. (My doctor doesn't give anyone 125mg but starts everyone on 100. I talked him into the 75mg but I slightly progressed on last scan so I chose to try 100mg again.)
I've had lots of different treatments in 27 years since BC first came my way and this is definitely the easiest to tolerate. That's not to say it's been a cake- walk though some here have had zero problems. Fatigue and nausea have been the most persistent for me. Early on I had a rash from knees to feet but that subsided after some months except for one dime-sized spot on my left foot! It's weird that it diminished during the 3 months I was on Lynparza but started buzzing again upon my return to Ibrance. (I guess it's there to remind me how good it feels not to itch other places!)
I haven't found any great way to solve the fatigue problem. I'm an artist so I just had to adapt to making "sit-down-art" as standing up for long periods isn't in the cards for me right now. The irony is that my art business has boomed like never before and it keeps my mind too busy to feel sorry for myself! I'm fortunate to have a dear husband who has taken on the housekeeping while grocery and meal delivery have kept us from starving!
Nausea is the most life-limiting part of this for me. There is no rhyme nor reason for when I throw up. It's quite different from the stomach flu or motion sickness. There is little warning and it just comes when it comes though only once in a day. It doesn't take long to vomit out everything in me and it's not too miserable. Sometimes I can eat a meal right after the drama ends! It does keep me from too much social contact due to the "no-warning" part of it. I mean, when it decides to come I barely make it to the bathroom! (Fortunately I retired from a job that had me doing sporadic TV interviews....Wouldn't that have been lovely?)
I have chosen not to take anti-nausea meds routinely because Zofran constipates me and gives me a short-term headache, Phenergen makes me sleepy and Compazine causes me to hallucinate. When preparing to go someplace I take half the smallest dose of Phenergen the night before and the lowest dose of Zofran before leaving home. A compound pharmacy is about to make a Phenergen cream for me to rub on my inner wrist. We'll see how that goes! Oh, about that constipation, Raisin Bran and prunes do a decent job of keeping me from having to force out rocks. (WTMI?!)
That's my essay for the week and it comes with prayers that you will be the "no-side-effects dancers" and that five years from now you'll be giving advice to new folks and I'll be a doddering old lady who can't remember her name but is alive and kicking and dancing with you still! Maybe by then the Compazine hallucinations will be welcome entertainment!
Love from PatGMcWordy!
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parariesea, I took the compazin. I hope you have a good night & a good day tomorrow! My " lack of nausea " has held through the day & my fingers are crossed for both of us ! On a side note : were you told to drink 3+ quarts of water / day? I was, kind of a full time job that
! Keep us posted!Pat, thanks so much for your post, really appreciate your insights & experience- & thanks for the well wishes too. I worked as a commercial artist previously
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