Ibrance (Palbociclib)
Comments
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IntoLight, I'm praying all is well with that next scan. My doctor says the same thing about switching machines.
I couldn't help but laugh at the mental picture of "a portable scanner that was parked in the parking lot". Hope you didn't have to traipse out there in a backless hospital gown and I hope it's not cold!
Love from PatGMcSilly
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ha ha...no Pat. They had a tiny room in the side of the trailer for me to rest my 45 minutes (surrounded by radioactive canisters) but I did have to go back into the building for the “radioactive patients” potty. I always dressed so I wouldn’t need to change but I could have changed in there. I am glad to be done with that
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Researchers at work:
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Husband11....great news
IntoLight.....I have been waiting to hear your results...so glad it's good news...hopefully the liver concern is nothing
Wandering....I have been on Xgeva for 3 1/2 yrs and it scares me too0 -
Intolight,
Great news! Congrats on being able to do continue to do the ibrance dance!
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Started cycle #2 on Monday. Mouth sores from 1st round gone. A dear friend of mine from my initial chemo group suggested Colgate Peroxyl mouthwash. This stuff works! Immediately my sores healed and I was free of them within a couple days of using it a couple times a day. Highly recommend this stuff!Taking both my Ibrance and Aromasin in the morning. Sleeping wains from ok to just enough to get by. Hot flash bursts at night, sleeping with light fan even when it’s cold outside, I’m usually always toasty. My husband gave me a hug the other day and said “boy your body is hot!!!”...I know he meant I felt physically warm but....I decided to be playful and I licked my finger, poked my butt and made a “sssssssss” sound and shot back “you know it baby!” as I exaggerated a wink his way.
Congratulations to those with good news and sympathy to those who have been dealing with a lot of challenges. I wish I had more to offer sometimes besides a little levity.
Including a picture of my beautiful Vera today
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Wandering,
So sorry to hear you are still having pain from ONJ. That always concerns me when getting my xgeva shots. I just had a root canal done, so far so good.
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Chris, remember, I have been having pet scans in a trailer in the parking lot for 3.5 years. It's all we have. If I move with my MO to her new building, she claims she will have her own machine. The different machine thing is an issue. When I was having echo-cardiograms every three months for Herceptin, my cardiologist would not even look at a report not done in his office by his tech. He may have had various motives for that but I did have to redo one once so he would read it. Never made that mistake again. My sister had a mammogram on a fancy new 3D machine a few years ago and had to go back for more pictures because they were seeing things they hadn't seen before. I bet it is the different machine showing your changes and not progression.
I guess I have sort of decided to stay with my current MO practice and not move with MO. Sort of scary. I have a new MO picked out who I really like and I love my nurses. The new building is in a part of town I hate to drive to. Is that enough reasons to make the decision? I go back and forth daily and can't wait for this move to be over. When I went to my regular MO appointment on Tues, my MO wasn't there. I just saw my nurse for blood work. She called me later with the all clear. That was about 6:45 PM. I kept telling her to go home but she said she had lots still to do. And she gets there at 7 AM. These nurses work their butts off and I really appreciate them.
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I'd like to add that my wife is on 75mg Ibrance.
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Chris, just read your post again. I agree with your MO for my own purposes, that is staying on Ibrance. She said, "Her reasoning (and her experience) is that no other medicine reportedly works as well for as long and they have harsher side effects." I've looked at the options for changing treatments and, maybe not efficacy-wise, but certainly side effect-wise, Ibrance is the only choice for me. I may never be able to change to another med and I accept that. For you new-timers, enjoy your time on Ibrance. Please. I really don't think another one is out there that compares. I guess it depends on how much you are willing to put up with and I have a very low tolerance for side effects. I want to treat my cancer but I REALLY want to maintain my quality of life.
And Chris, isn't it about time you bit the bullet and reduced your dose?
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Great news husband 11 and wife.
16 years ago they had PET scans in a trailer at my drs office. I think they didn’t want the rays or radioactivity near the other staff and patients at the hospital. Crazy cancer history. But we march right in, unveil our veins make a fist and let it flow.
Tany
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Tanya,
Great post.
I just realized that you and I started our cancer journey right about the same time. I was diagnosed in October of 2003 with ILC. I have lobular also, but not HER2+ (although I have the ERRB2 gene, which means an amplification of HER2). I had a single site metastasis in 2006 and went on letrozole from then until 2019, when they found other mets (liver, possibly bone) and so now I'm on Ibrance/faslodex.
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IntoLight so glad you are staying with us! 😊
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BevJen wow yes the dates are a match.
Hope you’re feeling well today?
Tany
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Tanya,
Luckily for me, I haven't NOT felt well. I have had some days with Ibrance where I am flat out tired, but other than that, pretty much chugging along. Let's hope that's a sign for us of slow-growing ILC.
Bev
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I had my monthly visit with my oncologist on Wednesday. Good news - my tumor markers were way down - hemoglobin was very low. I had blood transfusions on Thursday. He changed my pain meds which do not seem to be helping a great deal. The pharmacy will not fill the full prescriptions - too many pills in too short a period of time. I guess the pharmacy knows more about the pain level and how to control that than the doctor. Anyway we are still having discussions about how to handle. I am not interested in becoming a "druggie" but would like to control my constant pain.
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Wandering, just for clarity's sake - it isn't the pharmacy making the decision to deny you your pain meds, it's the federal government. If it were up to your pharmacist, you'd be pain free, and in no danger of addiction. Speaking as the wife of a pharmacist who owned his own store (we sold it when it became obvious the government was making all the medical decisions, and the insurance companies were making all the monetary decisions), they get absolutely NO satisfaction seeing any of their customers in pain. Especially when they know what can help them! In the United Staes, drugs can be prescribed by "physicians (of any specialty), physician assistants, nurse practitioners and other advanced practice nurses, veterinarians, dentists, and optometrists". But pharmacists - you know, the ones who studied nothing but drugs for 6+ years, and who are required to earn 30-40 hours of continuing education credits biannually - are apparently not qualified, and are therefore forbidden from prescribing anything... not even baby vitamins.
Sorry about the rant... some things stick in your craw, LOL (it's been six years since we sold the store, but the affront feels like yesterday!)
Anyway, Wandering, I hope you and your team can some up with a solution that works for you!
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hi. I haven't been on this board, because I was fighting TNBC (that had originally been ER+). My new biopsy shows that I am ER+ again, so I am back into ER+ treatment options and considering ibrance/fas again. Curious if anyone has any experience with either:
a) taking ibrance with fast growing liver mets. it appears I have multiple new lesions (3 of which are 1cm+) that were not detected on imaging less than 2 months prior
b) using ibrance with metastatic BC that toggled between ER+ and TNBC
thank you in advance!
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How lucky are we to have Mrs. Pharmacist here. Ciaci, how about insurance? Don't they also have their fingers in the decision pie?
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I did not delete the above post. Anyway, I was asking Ciaci if insurance doesn't have some say in what gets filled. I know my drug insurance controls how often I can refill something. And I was also saying how lucky we are to have Mrs.Pharmacist here to answer these kinds of questions.
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Yep Ciaci, glad you are here and talking sense as always. No idea what the actual protocols are here in the UK but I’m far more vigilant of drug costs and whether my team are prepared to prescribe.... there is a definite cost element attached.... not detrimental to the patient, but due to which budget the drugs are coming from...GP, hospital etc. So one will tell me to get the other one to prescribe in order for it not to come out of their budget. It’s a Bloody Battle!
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Jaycee, yes, the insurance companies decide what (based on which drug companies give them the biggest kickbacks) and for how much (as little as possible!), while the federal government decides if you've had enough (so severely limiting the C-II drugs, that some are limited to a 7-day supply, and you need to go to the physician to get a script every time - no phone-ins allowed!).
The Prescription Monitoring Programs were set up so doctors could see what other dugs their patients were taking - to stop abusers who doc-shop and buy at different pharmacies. I don't think the original intent was to prevent people with legitimate pain needs from getting their medications, but that's what it has become...
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IntoLight - it feels so wonderful to get a good night's sleeps, and really sucks not to. Lately sleep has been good, but occasionally not. What works, I don't know. Like so many things, it varies with the individual. I am taking 20 mg Melatonine about 2 hours before bed. But an ND suggested that for helping with the cancer, rather than for sleep (based on a very small sample size). I had tried melatonine years ago for sleep, and it did not help. Two friends mentioned that it did not help them. I also tried CBD drops with and without THC, a brand a friend found very helpful for sleep. It either had no effect or made me feel groggy the next day. So I'm not using it. I think diet/nutrition and being active, is key. I elminated alcohol several months ago ( yes I miss wine with dinner)., but I think sleep has improved. Sugar, trying to cut back even more. I remain active, and try to remember to take my glasses off for at least 10 minutes while walking (they darken, sunlight seems to help with the body's rhythms) , after reading "Anti-Cancer Living" Cohen and Jeffries https://anticancer-living.com/about/ , https://www.penguinrandomhouse.com/books/539281/anticancer-living-by-lorenzo-cohen-phd-and-alison-jefferies-med/
Acupuncture might help as well for stress etc. One friend mentioned that cranial-sacral massage seems to help her spouse with relaxation/sleep.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
7/19/2019 - swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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Ciai: The pharmacist claims the insurance company has decided the morphine prescription was refilled too soon and I need to wait until December 14th for a refill. The pharmacist told me last week I could get the pills if I paid out of pocket ($60 for 100 15mg morphine tablets). I am willing to do that since I am in so much pain I can hardly function but it seems unreasonable to pay the premiums out of pocket and also pay the for refill. So the pharmacist is pointing fingers at the insurance company for denying the refill. When I met with the oncologist he mapped out a pain plan - one 30 mg morphine pill every 12 hours and a 15 mg morphine pill in between as needed. That works out to 3 pills per day of the 15mg tablets. Not quite enough but in the meantime I can live with that. I would appreciate a response since I am working on getting this resolved tomorrow.
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Wandering, what did the oncologist put as a days' supply for the 15 mg? That's what the insurance company will hold you to. The problem comes in when they write PRN (as needed) - the insurance company can then get to decide how many you take. Normally, your oncologist would write 3x/day, for a 30-day supply (90), or 4x/day, for 30 days (120) - but I don't know what the limits are in Montana. Doesn't make sense that you'd need to wait three more weeks - CII prescriptions can be written for 30-day supplies, and unless you've blown through 100 tabs in a week, it shouldn't be too early. You can ask your oncologist's office or your pharmacy to call your insurance company, and find out what documentation they'd need to fill the script. That's what I did at our store, all day long - fight with insurance companies. It's disgusting that they get to decide who gets to take which medications, when, and how often...
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Hi all! I started cycle 2 125mg last tuesday. Starting yesterday and again today my scalp started to hurt. Yesterday it hurt to brush my hair. Today it hurts not even brushing it. Did anyone else have this? Is hair about to make an exit?
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Hi RaddagastRabbit,
My scalp didn't hurt much but it did itch. I lost a lot of hair but not all, and it is now coming back in a little thicker although the texture has changed. I bought a wig to wear at its thinnest, but found I didn't need to wear it much. Most of the time it was fine. I don't love it, but I am not bald. I can send a picture once it dries today--I just washed it.
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hi Rabbit,
My scalp is more tender than it’s ever been. I find that it gets sore more easily if I put my hair up in a ponytail or simply touching my scalp it is more tender. I have very thick curly hair and I really couldn’t tell if I lost any. More than anything, the meds have caused my hair to be dryer and my beautiful shiny curls have become more of a fluff ball of not super distinguishable curls. It’s weird but the whole texture of my hair has completely changed.
I went to a dermatologist recently to get a once-over, since I haven’t been to one in years. They seemed to think my scalp looks “red” and irritated and asked if it is itchy. I said nothing out of the ordinary 🤷🏽♀️ they wanted me to use a dandruff shampoo and I told them there’s no way I am using that crap on my hair (not just the chemicals but for vain purposes of how awful that stuff makes my hair look feel and smell!). So they said they were gonna Rx me some ointment to rub on my scalp. Turns out, it was a steroid! The pharmacist was like, “this is a steroid and I am wondering why you were rx’ed it?”
I told her why and she said that typically patients who needs this drug are the ones who have such an itchy head that they are scratching it while picking up theirs drugs. I definitely was not doing that. So I said thanks, and told her I didn’t need it.
I have no idea why my scalp looks red. Perhaps this is part of the toxicity of the Ibrance coming through the scalp tissue?? No clue!!
All this to say, yes my scalp is quite sensitive these days
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okay! Sensitive scalp, another thing to add to the list of annoyances. Those annoyances add up sometimes ugh. It doesn’t hurt like a joe Pesci blowtorch head burn on Home Alone might hurt but it doesn’t feel good. Hot flashes, flaming scalp, fun stuff. Hoping I don’t lose any hair, I’ve just managed to approach the poofy pixie stage after having lost all my hair from earlier treatment. Had long dark hair to the middle of my back... I miss it... I do appreciate the ease of short hair but it’s in the growth stage now I wake up looking electrocuted, it’s just everywhere. Headbands help. Hope to not see anything in the drain in the next few days. I’d rather tame electrohair then have nothing to tame right now.
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Hey all. I have not posted here for a while. I read all your posts, though.
Today I had my routine visit with my MO. CT in Oct with slight progression to liver met. PET in Nov with no uptake. So still doing the Ibrance Dance- on cycle 24, 75mg. We had changed Xgeva back to monthly a few months back due to elevated TM's and new back pain. With PET results now, we are moving Xgeva to quarterly again. I am ok with that. Don't want to risk ONJ. We are going to continue TM's, but she said they are not real accurate for me, so we are going to do them every 2 months instead of monthly. We will continue to do CT's every 3 months (she said if insurance agrees). I was afraid my MO would get too overly confident and want to stretch scans out. I did not want that. I want to continue to watch closely for any signs of progression.
So next scan Feb (I hope---see what insurance says).
Side effects for me----hot flashes, FATIGUE--the worst side effect for me, constipation, joint pains. AI use and Ibrance use-- side effects of both meds combined.
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